Connexions Spring 2021 by Connexions

conneXions www.fetalhealthfoundation.org

linking the medical & personal worlds

from diagnosis to delivery + beyond clinical trials: patients at the center

covid-19 + pregnancy: emerging information to know exit procedure saves baby with rare tumor 1

connexions

spring 2021

of fetal syndromatic issues

The image depicted contains models and is being used for illustrative purposes only. Janssen Research & Development, LLC © JRD, LLC 2021

Creating a future where disease is a thing of the past. We are Janssen, the Pharmaceutical Companies of Johnson & Johnson. Bold thinkers. Big dreamers. Fearless advocates on behalf of patients. So that one day, the world’s most daunting diseases, such as hemolytic disease of the fetus and newborn (HDFN), will be found only in the pages of history books. Learn more at www.janssen.com.

a look at the inside...

5 benefits of meditation during pregnancy

research spotlight: hydrops center of excellence

special feature: clinical trials: patients at the center

ttts vs. taps: what's the difference anyway?

special feature: exit procedure saves baby with rare tumor diagnosis

fetal care chat

special feature: celebrating 25 years of fetal medicine + the life-changing innovations to come

pregnancy + delivery: 5 unexpected complications

special feature: from diagnosis to delivery + beyond

covid-19 + pregnancy: emerging information to know

hanging by a heart string

creative ways to entertain your littles at home

special feature: fetoscopic spina bifida repair during covid-19 pandemic

6 tips for a better night's sleep

special feature: first stem cell clinical trial for spina bifida treatment announced

special feature: conjoined at birth: the story of twins' amazing separation

understanding immune pathways

now i lay me down to sleep continues to serve bereaved families amidst pandemic

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cover photo courtesy of Joseph Ruwa on Pexels

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letter from the editor... The changing from one year to another never felt so good than this year’s New Year. Granted, everyone’s traditional celebrations looked a little differently, but after all so many of us experienced last year, it didn’t really matter. The turn of the calendar offered promises of change and it offered hope when so much felt lost. Our organization saw many pregnant moms feel even more overwhelmed than normal last year. Doctor appointments were primarily virtual. Scans and tests were often limited to just mom. When a fetal syndrome diagnosis was received, it was even harder to receive treatment, mainly due to travel restrictions, but in some cases, because fetal centers were closed and resources reallocated to help where needed most at the height of the pandemic. In a time when many pregnant moms felt even more isolated and alone in trying to keep themselves safe when things were constantly changing, the Fetal Health Foundation was only a phone call or email away. We were able to step in and find doctors for second opinions and to help facilitate treatment when necessary. When many small businesses and non-profits had to shut down during the worst of last year, thankfully, we were able to hold faith and we held strong because we believe in what we do and why we fight so hard for patient families every day. We have walked that journey. We remember just as clearly receiving a fetal syndrome diagnosis and having a million and one questions race through our minds, yet not feeling empowered enough to ask even one. We remember the fear of watching each scan at every next visit, wondering if there would be even more bad news. You are not alone. The Foundation is always ready to teach you how to be the best advocate for your baby and family. We have the resources to educate you on your diagnosis, and we can get you into the right hands for second opinions and treatment when necessary. We have an even greater hope today that we had when we were in your same shoes. We would love the opportunity to share that hope with you and yours. From my heart to yours, thank you for your support this year and going forward. Here's to happiness and health!

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Contributors: stephanie ernst jenny silverstone tanya mack kiley morrow kristin herman shannon serpette rosie moore lorri sisemore c. anne patterson tanya mack candice deleeuw david lee

Connexions magazine is an award-winning, annual digital and print publication produced and distributed for the fetal medicine community by the Fetal Health Foundation,. The Foundation is a nationally registered 501(c)(3), non-profit organization based out of Colorado. You can follow the Foundation through monthly newsletters, on our blog, and across social media.

in honor of all the babies gone too soon. fetalhealthfoundation.org

photo courtesy of luise + nic from unsplash

Lavinia-Jae Anahera Marsh TTTS 12/24/20 Ela Osaj TTTS 3/15/20 Alexander Deleeuw HLHS 3/19/06 Emily TTTS/TRAP Sequence 5/15/07 Leo Jo Caruana Coleiro TTTS 1/23/21 Charli Arrowsmith HLHS 12/22/20 Sawyer Layne + Sutton Anne Roland TTTS 3/15/21 Lucianna Grace + Melana Rose Rodriguez TTTS 12/1/12 Lucas Ambrose McInerney TTTS/SIUFGR 10/03/21 Enzo Hoover Roche TTTS 5/14/20 Cole Edward Ryan Tummers TTTS 12/13/09 Baby Dagostina TRAP Sequence Celestia Rose Arnold TRAP Sequence Baby Jellett TRAP Sequence Evelyn Nicole + Eleanor Naomi Jones TRAP Sequence Piper Jayde Kessler Umbilical Cord Accident Lola Grace Mauro TRAP Sequence Aubrey Faith Allen TRAP Sequence Kallie Beth Palmer TTTS 7/29/06 Jace Niland LUTO 12/14/17 Lauren Kaneshiro TTTS 3/24/19 Cristiana Caudill ABS 7/1/18 Emily HLHS 6/28/17 Hunter Thomas + Jake Dimitrie Siebold TTTS 8/19/95 Faith Bianca Houghton TTTS 12/20/10

benefits of meditation during pregnancy Whether you’re a first-time mama-to-be or you’re adding to your existing brood at home, pregnancy can be a challenge. There is so much to plan for, think of, and worry about; your mind feels like it’s always running at top speed. Meditation can be a great way to slow things down a bit, reconnect your body and mind, and take off some of the strain during your pregnancy. If you have never tried meditation before, you might not be sold on how easy it is or the benefits it can offer. Here are five of the reasons pregnant women may want to consider adding meditation to their daily routines.

by shannon serpette

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1. It Quiets Your Mind Women have so much to worry about during pregnancy. Most importantly, mothers worry about

the health of their unborn baby, and the possibility of any medical challenges or issues can throw you into a tailspin. The stress of that alone can be enormous. On top of that, we worry about our own health, the financial challenges of expanding a family, our jobs, which foods to avoid while pregnant, and anything else that sneaks its way into our already stressed brains. Our whole day can be a whirlwind juggling act where we focus on eating right, making our doctor appointments, getting some exercise, finding clothes to accommodate our expanding bellies, working our jobs, and perhaps even taking care of our family. We do all of that while trying to find and buy all the baby gear we will need and prepare a

Our whole day can be a whirlwind juggling act where we focus on eating right, making our doctor appointments, getting some exercise, finding clothes to accommodate our expanding bellies, working our jobs, and perhaps even taking care of our family. nursery for our babies. When I was pregnant, it felt like my mind never stopped. When I would try to fall asleep at night, one thought after another would keep me up. The anxiety was there almost all the time. If that sounds like you, meditation is a wonderful way to quiet some of those intrusive thoughts so that you can wind down. With meditation, you will be concentrating on listening to your rhythmic, steady breathing. At first, it can feel unnatural, but it won’t be long before you’re good at tuning everything else out --- giving your mind a muchneeded break. ● It doesn’t require any special equipment, which is great at a time when you’re already cash strapped and likely don't wish to be lugging anything around. ● You don’t need any extra space in which to do it --- you can meditate in your bedroom, backyard, park, office chair, or anywhere else you feel comfortable. ● It doesn’t take long to do. Even a quick five-minute session can help instantly and considerably. ● You’re physically capable of doing it, even when other things like bike riding and hot tubs are off-limits.

2. It Connects Mind + Body Sometimes women are simply too busy or distracted with dayto-day life to truly listen to what their bodies are trying to tell them, especially when pregnant. They ignore minor aches or pains, and those issues can later result in bigger problems. Women fail to listen to their natural intuition --- that feeling when you know something is off, but you can’t quite put your finger on what the problem is. During meditation, you are doing nothing but clearing your mind and becoming more in tune with your body. With every deep, soothing, slow breath, it’s another chance to pinpoint whatever is going on that isn’t quite right. When you take the opportunity to slow down, you start paying attention to the things you don’t notice when you’re running at break-neck speed, just to get through your busy day. You may notice your baby’s movements and kicks more, which can lead to an increased sense of bonding and peace of mind on your part. Conversely, it will help you notice if those kicks and movements seem decreased, so you can discuss it with your doctor. 3. It Cuts Down on Stress Every pregnant woman has likely heard a lecture about how

she should avoid stress. That is almost impossible to do during pregnancy. However, if a day passes without some form of worry, you can count yourself incredibly lucky. Between regular pre-pregnancy stressors, you now have a lot more to deal with. From a lack of quality sleep because of a growing belly, possible aches and pains, and a busier-than-ever schedule, the stress seems to pile up pretty naturally. In its most basic form, meditation helps you stop thinking about everything that is stressing you. It can give you a different perspective on the thing that is bothering you, enabling you to reframe it as a temporary challenge, not an overwhelming setback. The result can be a less intense response to stress, even if your situation doesn’t change. By cutting back on stress, you can improve your pregnancy in other ways. You might even kick some of those raging not-so-healthy pregnancy cravings to the curb. That’s not to say you’ll squash every impulse to eat a tub of ice cream while you complain to your bestie about the enormous size of your swollen lower legs. You’ll still want junk food sometimes, and you may still feel like a bottomless pit at others, but

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you’ll be able to cut back on some of those cravings and that can keep the unwanted pounds from packing on too quickly. 4. It Can Lower Blood Pressure There’s no doubt that pregnancy can drive up your blood pressure. Even if you've never had problems before, approximately 6-8% of pregnant women deal with high blood pressure at some point throughout the pregnancy; it’s a pretty common problem. Some women have high blood pressure before pregnancy, and that can continue or become aggravated once they are expecting. For others, the onetwo knockout combination of gaining weight and getting less exercise naturally drives up their blood pressure. Older moms, those with diabetes or other conditions, those having multiple babies, as well as those with a family history of gestational high blood pressure, are all at greater risk for seeing a spike. Simply being pregnant can cause your blood pressure to rise, which many know can cause preeclampsia. Even if you don’t have high blood pressure, it’s never a bad thing to lower it a bit through meditation. Why meditation lowers blood pressure isn’t exactly understood by experts, but researchers have enough evidence to confidently state that it does, just as stress can drive it up. When you need an almost magical solution to

lower blood pressure, meditation is as close as it gets. By simply sitting still, closing your eyes and shutting everything out, clearing your mind, and regulating your breathing, you can drop your blood pressure pretty quickly and naturally. If you have high blood pressure, it may not be enough to take you off of medication or doctorprescribed bed rest, but it can be one step in helping protect your health and your baby’s, so it is definitely worth giving a try. 5. It Helps You Sleep More Soundly Sleeping while pregnant can be difficult sometimes because it’s so hard to find a comfortable position. While sleep aids like body pillows can help, so can meditation. By helping you enter a deeply relaxed state, meditation encourages you to fall asleep faster and sleep more soundly. Getting enough sleep while you are pregnant is crucial for several reasons. Your immune system is already weakened just from being pregnant, so it’s smart to get enough sleep to strengthen it as much as possible. During uncertain times surrounded by the flu and various strains of COVID, a strong immune system will protect both you and your baby throughout the pregnancy. The daily recommended amount is between 8-10 hours each night, and when pregnant, throughout the day as needed to help you feel refreshed.

While you are expecting, you’ll likely notice a lot of up and down moods, even if you’ve never been the moody type of person. Those pregnancy hormones are a large part of the reason for all the big feelings you’re having right now. Getting a good night’s sleep won’t make the hormone-induced overreactions entirely go away, but it can help. Think about how cranky you were pre-pregnancy when you didn’t sleep well. A full night of sleep can help stabilize your mood so you aren’t ready to take anybody’s head off over the slightest thing. Plus, growing a new life is tiring work for your body. You may find you need more sleep than you once did just to feel like you’re still fairly functional. It’s not uncommon to feel more tired during pregnancy than you ever have in your life. If practiced regularly, meditation can calm you enough that you can get more quality shut-eye. It’s one of the most important things you can be doing for yourself right now. Meditation is an easy way to help both you and your baby during those long months of pregnancy. You’ll likely find it helps ground and center you, even if you’ve never tried meditation before or doubt that it can do any good for you. It’s free to try, and it’s super simple to do, so give it a try and get started today!

Shannon is an award-winning writer and editor from Illinois, who regularly contributes to newspapers, magazines, and websites. As a mother of two, she loves to write about parenting issues and is dedicated to educating other parents at every stage of their child’s development.

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research spotlight research grant

update

Drs. Sparks, Norton, and their team published the primary manuscript for their HyDROPS studies (Hydrops: Diagnosing and Redefining Outcomes with Precision Studies) in October 2020 in the New England Journal of Medicine. This manuscript described the overall yield of an advanced test called exome sequencing for identifying a diagnosis in non-immune hydrops fetalis cases with normal results of standard genetic testing. For all cases with an abnormal fluid collection in the fetus, exome sequencing identified a diagnosis in 29%; for cases with two or more abnormal fluid collections, it identified a diagnosis in 34%. These diagnoses had important implications for management of affected pregnancies, planning for neonatal care, and estimating the chance of each family having another affected pregnancy. Drs. Sparks, Norton, and the study team are now working toward defining the prenatal presentations of genetic diseases with abnormal fetal fluid collections, identifying additional genomic causes of hydrops, and developing a Hydrops Center of Excellence at UCSF. A recent grant was awarded on behalf of the Brianna Marie Foundation,

Drs. Sparks, Norton and team celebrating the publication of the primary manuscript for their HyDROPS studies in the New Englant Journal of Medicine in October 2020.

whose mission is to raise and manage funds to support medical research for the care and treatment of children, specializing in the area(s) of fetal medicine. The Fetal Health Foundation has been proud to support ongoing research within the fetal medicine field for nearly 10 years. In light of recent changes and the collaboration with the Fetal Therapy Think Tank, the Foundation is working with industry leaders, researchers, top specialists, and doctors and nurses all across the country in helping to better support patient families and improve outcomes. The Foundation's Points of Light Research Grant will be available for this year's cycle. To be added to a list of interested researchers, please email talitha@fetalhealthfoundation.org. To learn more about the Fetal Health Foundation's Research Grants, visit https://www.fetalhealthfoundation.org/research-grants/.

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special feature

clinical trials: patients at the center

special editorial submitted by champion steward partner janssen pharmaceutical companies of johnson & johnson 10 connexions

Good health for mothers and babies in the womb creates the foundation for a vibrant childhood and future. Very rarely, despite maintaining good health, a mother and developing baby can have different blood types that are not compatible, putting them at risk for a disorder known as hemolytic disease of the fetus and newborn (HDFN), which affects 3 to 80 in 100,000 patients per year in the U.S.1 In HDFN, a mother’s immune system identifies the fetal red blood cells as “foreign” and mounts a response that can cause serious health complications for the fetus.

Scientists are developing new treatments to be safer, more effective, and less intrusive than the current standard of care for the most severe forms of HDFN. These investigational treatments harness the latest knowledge of how the immune system works and employ new antibody therapy technology. For example, Janssen’s Autoantibody Pathway scientists are researching antibody-based treatment as a potential therapy for pregnant women who have a high risk of severe HDFN. What does it mean to participate in a clinical trial? What’s involved? Patients at the Center: Trials and Innovation Janssen is driven by a relentless dissatisfaction with the status quo, working to improve existing treatment options for patients and address unmet patient need. Central to our ability to study immune disease and innovate better solutions is our relationship with patients and physicians and the belief that close communication is important to reflect the patient voice when developing clinical trials. We want to learn from patients and their caregivers what will help or hinder participation in our studies so that we can modify our trial protocols accordingly. By talking to patients, we learn about the need to explain technical terms, or, when English is not a native language, the importance of having a translator available. By talking with patients, we’ve learned that office visits might be hard for someone using a wheelchair or that drug packaging might be difficult to open for someone with arthritis. We’ve learned that patients are interested in the potential

for remote visits as part of trial participation, but also want to know what would be involved. Equipped with this knowledge, we try to adapt study protocols and address needs as best we can. For example, in one study, patient focus groups helped Janssen determine if patients’ trial tools -such as a symptom diary -- were user friendly enough to capture important study information. Thoughtful adaptations and explanations can help reduce patients’ stress and burdens while improving trial enrollments and increasing participant retention. Clinical Trials Drug intervention clinical trials are rigorous studies, done with volunteers, that generate the information and scientific data needed by the U.S. Food and Drug Administration (FDA) to consider the benefits and risks of a candidate drug and then decide if it is safe and effective for patients. Nearly 32,000 trials are recruiting participants or are underway today in the United States.2 Trial Phases The testing of an investigational drug in humans is done in a progressive series of clinical trials, defined in the United States by the FDA as four phases with distinct enrollment sizes, durations and purposes: • Phase 1 studies examine a drug’s safety and dosing in a very small number of healthy volunteers or people with the disease and can last a few months. This phase starts with very small doses of the study drug and watches patients closely to understand any side effects, as well as how the body processes, metabolizes and excretes the drug.

• Phase 2 trials examine the drug’s efficacy (or effectiveness) and side effects in groups as large as several hundred people with the disease. These studies can last several months to up to two years, depending on the condition being studied. • Phase 3 studies are designed to determine how effective the drug is compared to what’s currently available to treat the illness or condition. These studies examine drug efficacy and adverse events in hundreds to thousands of people with the disease or condition, and can last for many months or even multiple years. These studies include enough patients that scientists can evaluate results in subpopulations of patients, such as based on their disease markers or status, demographics or different drug dosing. • For some FDA-approved drugs, Phase 4 trials continue to examine the drug’s safety and efficacy in patient populations as large as several thousand. These trials can help detect unexpected adverse events. Of note, the FDA permits different enrollment targets when the disease is considered. For example, advanced trials of heart disease therapies can enroll thousands of patients. In contrast, those for a rare or “Orphan” disease like HDFN may enroll about two dozen patients. The study protocol or plan Every study has a protocol or plan that outlines how the study will be conducted. This includes how many participants are needed to ensure the target patient population is well represented to generate enough data to permit rigorous statistical

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analyses required to prove the results are authentic and not just a coincidence. The protocol also outlines the trial duration and the type and schedule of any dosing, additional treatments, procedures and tests. Notably, the plan also states how information and data about the participants and their experience will be collected, assessed and protected. Defining Success All clinical trials collect data about the drug’s effectiveness and safety, as well as the participants’ health. Study plans prioritize such endpoints into primary, secondary and, sometimes, tertiary or exploratory. Primary endpoints collect information to support the main patient outcomes that demonstrate the drug’s efficacy or safety. For a new medicine to be approved by the FDA, it’s not enough to be safe and effective; these studies also demonstrate that the medicine is better than what’s currently available to treat the disease or condition. Defining Common Study Terminology Let’s do a little translating. Here’s a common description of a

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study: “A Phase 3, randomized, double-blind study.” The study phases are fully described above. Randomized refers to the random method of assigning patients to a specific treatment within the study. Since it’s important that study results be as objective as possible, neither the physician nor the patient knows which treatment the patient receives. This is referred to as a “double-blind.” Protecting Patients Before any U.S. clinical trial begins, the FDA requires that an independent institutional review board (IRB) must review and approve the study plan to make sure it meets ethical and safety standards. The IRB checks to see if the risks involved in the study are minimized and reasonable in comparison to its potential benefits. The strict oversight of the IRB includes its review of the process and forms by which people receive and understand trial information and provide their informed consent to enroll in a study. The informed consent process is meant to protect participants and make sure they grasp the trial’s risks and potential benefits.

For a new medicine to be approved by the FDA, it’s not enough to be safe and effective; these studies also demonstrate that the medicine is better than what’s currently available to treat the disease or condition. Should You Participate in a Trial? Participating in a trial is a highly personal decision, and one that should be made after carefully reviewing the information you receive about the study plan and what to expect. If you choose to enroll in a clinical trial, you will be making medical history! Your participation will contribute to understanding the risks and benefits of a drug that has the potential to change someone’s life for the better. To find a trial you might consider, visit clinicaltrials.gov. All clinical trials that are planning to or are already enrolling patients are listed at this site. In addition, some pharmaceutical companies have searchable websites of the trials they are planning or conducting. Janssen’s Global Trial Finder is on the company website, for example. If you think you might be

interested in participating in a clinical trial, you should start by talking to your doctor. Clinicaltrials.gov suggests that you ask these primary questions: • Are there clinical trials available for the disease I have? • What is being studied? • Why do researchers believe the intervention being tested might be effective? Why might it not be effective? Has it been tested before? • What are the possible interventions that I might receive during the trial? • How will it be determined which interventions I receive (for example, by [randomization])? • How do the possible risks, side effects, and benefits of this trial compare with those of my current treatment? • What will I have to do? • What tests and procedures are involved? • Where would I have to go to participate, and how often will I have to visit the hospital or clinic? • How long will the study last? • What type of long-term follow-up care is part of this trial? • Will the results of the study be provided to me? • Who will oversee my medical care while I am participating in the trial? Medical advances are made possible through the commitment and collaboration of so many: scientists, physicians, nurses, and social workers. But central to all is the participation of patients. To learn more about clinical trials go to ResearchIncludesMe.com or learn more about Janssen's HDFN trial here: https:// unityhdfn.com/.

References 1. Ling, L., Yu, D., Gleeson, C. D., & Moise, K. (2021). 968 Estimation of hemolytic disease of the newborn in the United States from 1996-2010. American Journal of Obstetrics and Gynecology, 224(2), S600–S601. https://doi.org/10.1016/j. ajog.2020.12.993. Accessed March 2021.

YOUR PARTNER IN FETAL CARE The Midwest Fetal Care Center, a collaboration between Allina Health and Children’s Minnesota, offers mothers with high-risk pregnancies and babies with complex conditions a continuum of care that is among the best in the nation. As the only advanced fetal care center in the Upper Midwest — and one of only a few in United States — we bring together maternal fetal experts and the latest technology and treatments in a coordinated setting. Our mission is to provide patients and families with an exceptional experience with the best possible outcome.

Learn more at midwestfetalcarecenter.org

2. Clinicaltrials.gov. Recruiting or Active trials United States. Available at: https://clinicaltrials. gov/ct2/results/map?recrs=ad&map. Accessed March 4, 2021.

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ttts vs. taps: what's the difference anyway?

by stephanie ernst

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There are so many myths and misconceptions about Twin Anemia Polycythemia Sequence out there that it's honestly time someone started to put them straight. History is littered with stories and images that could possibly depict TAPS. You only need to look at the story of Jacob and Esau, or even the hauntingly beautiful painting of "de Wikkelkinderen" to see that red and white twins have been born throughout history.

This article is designed to help people understand the differences between them and why both must be recognized as separate diseases. This step is vital for ensuring that essential TAPS screening is added as a priority to monochorionic twin screening protocols. Saying that TAPS is a form of TTTS is damaging to advocating for routine screening In The Beginning TAPS and TTTS have one thing in common --- both are forms of Feto-Fetal Transfusion. This is probably where most of he confusion lies. Up until 2006 when TAPS was described and named, and then 2007 when Gratacós staging for SIUGR was introduced, everything was considered twin-to-twin transfusion syndrome (TTTS). In the late 1800s, a German obstetrician was already describing connections in the placenta of monochorionic twins and is generally accepted to be the first person to explain the

concept of feto-fetal transfusion. This concept of shared placentas and transfer of blood between the babies was researched throughout the years. Of course, as technology and research evolved, we began to understand this concept of intertwin transfusions. We learned that cord insertions, placental sharing, and even the babies' placental blood vessels impacted the pregnancy's health. Then came the arrival of ultrasound technology, and by the mid-1980's, it became pretty routine to have pregnancy ultrasounds. As this technology became more and more refined, we understood more about what we were seeing. Ultrasound also helped guide the first fetoscopic laser surgeries in 1988, and then, in 1999, we had our first staging system for TTTS. This staging is still in place today and is called the Quintero Staging system. Everything that could go wrong was placed under the category of "Twin to Twin Transfusion

Syndrome" or TTTS. Size discordances? Different colors? All TTTS. But then, what about these outlier cases? When babies were born red and white, it was thought to be a case of acute TTTS. With the advancement in monitoring and subsequent laser surgery, this should have been resolved. In 2006, this mystery was about to become crystal clear. Along Comes A New Diagnosis Even within the scientific world, papers dating back to mid last century have described twins born with anemia and polycythemia. Still, it wasn't until the early 2000's that TAPS entered our dialects as a separate entity to twin to twin transfusion syndrome. Around 15 years ago, two papers were published within days of each other. On March 1st, 2006, a paper from Robyrr et al. described a complication of otherwise successful laser surgery for Twin To Twin Transfusion Syndrome, where one twin was left pale and anemic, and the other red and swollen with thick blood known as polycythemia. They described small, residual anastomoses in the placenta that were missed or incompletely sealed during the laser surgery process. The second paper, published 2 days later on March 3rd, described this happening spontaneously in monochorionic twins, as well. By Lopriore et al., this paper is considered a considerable part of the TAPS world, as it gave our disease a name.

diagram showing feto-fetal transfusion through ttts

Over the years, as we've learned more about this rare disease,

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treatment options have been created and diagnostic criteria refined. This is an essential part of understanding why TAPS and TTTS are different diseases. Defining A Disease The Merriam-Webster Dictionary defines a disease as: "a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms." TAPS and TTTS (and by extension, the third disease making up the trifecta of fetofetal transfusion, "selective fetal growth restriction" or SFGR) have different diagnostic criteria, different treatments, and different long-term outcomes. All three, as per the above definition, have distinguishing signs and symptoms that clearly separate them from each other. Another Name For The Same Disease? TTTS and TAPS are different diseases. They share some fundamental similarities, being that both are rare diseases affecting the placenta of monochorionic twins. Both are caused by anastomoses in the placenta, but this is where the similarities end. TTTS is diagnosed with fluid differences. Most centers agree on Quintero Staging, with fluid levels <2cm and higher than >8cm, along with abnormal dopplers and hydrops in advanced stages. The most effective treatment has been established, with laser therapy being the most effective way to resolve it. Untreated TTTS

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has a high mortality rate, but successful laser surgery has a survival rate of around 75-80% for at least one twin. Severe neurodevelopmental impairment happens at a rate of around 6%, without differences between donors and recipients. Overall, approximately 11% of pregnancies have some degree of neurodevelopmental impairment, with both babies equally affected. When we compare this to TAPS, there are already some glaring differences. TAPS is virtually undetectable on ultrasound (except in advanced stages), and is diagnosed via doppler readings on the babies' brains' mid-cerebral artery. By definition, TAPS is diagnosed on large inter-twin hemoglobin differences, without differences in fluids. The diagnosis is based on fetal anemia, with the earlier staging system based on cutoff values and the other based on delta readings. There are also other TAPS signs, but it’s important to remember that around 14% of TAPS cases will present with no other ultrasound markers, other than discordant MCA dopplers. There is also a postnatal staging system for TAPS. TTTS doesn't have post-birth diagnostic criteria. For TAPS, hemoglobin and reticulocytes are needed and placental pathology to confirm the presence of tiny connections in the placenta. In TTTS, these are large surface connections, evident to the naked eye. For TAPS, these connections are small, less than 1mm thick, and

Top: Monochorionic twin placenta, spontaneous TAPS (author's own). Recipient on left, donor on right. Bottom: Maternal side of same placenta showing the characteristic color difference between donor and recipient.

really only become apparent with dye injection. There is also a large color difference on the maternal side. While TAPS has been researched extensively for the past 15 years, we still don't know a lot about it. This stems from a lack of information, but if routine screening protocols for TAPS were introduced, this hurdle could be overcome. Multicenter, international clinical trials have pooled some research, and the current TAPS Trial is working on the treatment options. However, we still do not know enough about the disease to establish what the best treatment is. We know that

TAPS has a range of treatment options, including laser surgery using the Solomon Technique. Remember where we said that the long-term effects of TTTS affect donors and recipients equally? This isn't the case with TAPS. There is a vast divide in long-term effects between donors and recipients. First of all, in post-laser TAPS, the outcomes are similar to TTTS cases, but perinatal mortality is higher for donors than recipients. Severe neurodevelopmental impairment is at a similar rate (9%) to TTTS, with no difference between donors and recipients. Spontaneous TAPS carries some grave long-term outcomes. While mortality rates are lower, donor twins show a high cognitive impairment rate than recipients (35% vs. 18%). They are also at risk of a type of deafness called Auditory Neuropathy Spectrum Disorder (ANSD), at around 15%. This phenomenon is not recorded in anemic TTTS donors or in cases of Rhesus disease. Comparing TAPS and TTTS isn't like comparing red apples with green apples anymore. It's really comparing apples and oranges. Calling TAPS A Form Of TTTS Is Damaging If we continue to refer to TAPS as a form of TTTS, it dilutes the advocacy done to get routine TAPS screening protocols in place.

Putting both into the same basket can lead to complacency about screening, meaning that doctors will not look for it because it’s just the same as TTTS, right? There are so many myths about TAPS already. Guidelines don’t support screening for it, yet the mortality rates and long-term TAPS effects are devastating. Given that anywhere between 40-63% of TAPS cases are diagnosed after birth, a lack of screening is evident. By continuing the monotonous line of “TAPS is a form of TTTS,” the importance of prenatal screening is overlooked. If it’s a form of TTTS, then it can be seen on ultrasound, right? The longterm effects are the same, right? As pointed out, they are not. There is also a general lack of understanding about long-term consequences. Too many people are saying that they are linked to prematurity rather than TAPS. If that is the case, why are donors affected much more severely than recipients? Why is the rate of ANSD at 2-4% in prematurity, but at 15% specifically only in TAPS donors and not recipients? We still fight for routine screening and bust pervasive myths about our disease today. Very few countries have routine MCA doppler screening built into screening protocols for monochorionic twins. National and International organizations refuse to update their guidelines,

often citing a lack of research into this disease. With the introduction of routine screening protocols and creating international collaborations like the former TAPS Registry, we gain valuable insight into post-laser and spontaneous treatment protocols and outcomes so we can learn more about it. It’s really time to start changing how we look at this rare disease. TAPS is a separate disease, needing different screening and treatments, as having different long-term outcomes. International guidelines need to support changes to screening protocols, share this information, and create learning moments for specialists about TAPS. Parents need to be told about TAPS and given the right to have screening as part of their care. They need to be given the support and resources to advocate for their babies, before and after birth, and in the longer term. Most of all, we need to recognize that TAPS is a real diagnosis with real consequences. It is not a form of TTTS. It is a severe disease that needs better recognition on it’s own. Calling it a form of TTTS damages the urgency of changing screening protocols and raising awareness, which ultimately improves outcomes for patient families. TAPS is Real.

Stephanie Ernst is the founder and resident TAPS Nerd of the TAPS Support Foundation. She writes about her TAPS diagnosis experiences and navigates her own daughters through their TAPS journey. Diagnosed in 2013, her passion for TAPS awareness has led her to help families connect and advocate for their own ongoing care.

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EXIT Procedure Saves Baby with Rare Tumor Diagnosis Giving birth under normal circumstances can often be incredibly stressful. Giving birth to a baby with an unusual prenatal diagnosis at 27 weeks in the midst of a global pandemic, though, comes with its own unique challenges. That was the reality one family was facing. But the care team at the Colorado Fetal Care Center — the only team in the region able to perform the procedure their baby needed to survive — was there to help them through it. Fetal tumor diagnosis and treatment plan When rural Colorado couple Lyndsy Tobler and her husband, Aaron, found out they were pregnant with their third child, Ella, they were excited. Lyndsy’s other pregnancies had gone smoothly, and this one was too. At Lyndsy’s 20-week ultrasound, doctors found a large mass on Ella’s tailbone. Using telehealth, doctors connected with maternal-fetal medicine specialist and Medical Director of the Colorado Fetal Care Center, Michael Zaretsky, MD, who confirmed Ella had a particularly aggressive sacrococcygeal teratoma. Also known as SCT, it’s an extremely rare fetal tumor that occurs in approximately 1 in every 40,000 live births. “I automatically started researching the diagnosis,” Lyndsy says, “but because the condition is so rare, there was hardly any information on it. It was extremely frustrating.” At 22 weeks, Lyndsy and Aaron traveled to Denver for a comprehensive appointment at the Colorado Fetal Care Center.

After several in-depth fetal diagnostic tests, including a fetal MRI, ultrasound and echocardiogram, they were finally able to get concrete answers and treatment options. Dr. Zaretsky and the care team explained the associated risks and outcomes possibilities of each. Importantly, some treatment options would increase the risk for early delivery, which meant Ella would have a higher risk of complications, even death. “I had tons of questions over the next few weeks,” Lyndsy says. “But every time I’d call Dr. Zaretsky or any of the Colorado Fetal Care Center doctors, they’d call me back that same day. That really helped me and my husband through the process so we could make a decision that was right for us.” Lyndsy and Aaron decided to let doctors continue monitoring Ella to see if she could make it to 28 weeks. That way, she could grow as much as possible before doctors had to intervene.

Ex utero intrapartum treatment (EXIT) procedure By 27 weeks, Lyndsy was so swollen with amniotic fluid and the size of Ella’s tumor was so large that Lyndsy’s doctors decided to schedule her for an ex utero intrapartum treatment procedure, or EXIT procedure. The Colorado Fetal Care Center is the only hospital in the Intermountain Region to offer an EXIT procedure. This is because it’s a complex procedure, requiring a coordinated effort from both maternal and pediatric providers from multiple specialties including maternal anesthesia, fetal anesthesia, maternal fetal medicine, fetal surgery and fetal cardiology. The procedure also has a strict timetable and requires constant monitoring of the baby’s heart, blood flow and many other vitals. Fetal and pediatric surgeon Kenneth Liechty, MD, performed Ella’s EXIT procedure with an extensive multidisciplinary team of over 20 specialists to ensure that Ella and Lyndsy received the best possible care. Doctors delivered only Ella’s backside at first, so they could remove her SCT while she was still connected to the umbilical cord. Doing this would give Ella the best chance for survival. The SCT was about double Ella’s size, the largest one the team at Colorado Fetal Care Center had seen. Once it was successfully removed, they fully delivered Ella. But Ella remained in critical condition. She needed resuscitation from neonatology specialists. Her heart wasn’t emptying blood. Her lungs weren’t filling with air. At one point, it was unlikely she would live, but the team continued to fight. Against all odds, Ella stabilized. Eventually, she was moved down the hall to recover in the Level IV Neonatal Intensive Care Unit (NICU) just steps away from where Lyndsy was recovering in the Labor and Delivery Unit .

Communication, recovery and care “They were really good about updating us,” Lyndsy recalls. “They pushed me over in my hospital bed so that I got to see Ella in her private room. At first the updates were, ‘Your baby is very sick, and she isn’t doing well.’ But then over time that changed to, ‘She’s moving and doing well and looking good.’ And I think that really says something about the quality of care she was getting.” Although Ella was in the NICU for several more months, she is now a normal premature baby. She’s healthy, sleeping a lot and gaining weight. She’ll have another surgery to remove her coccyx, which should lower her chances of another tumor. Looking back, Lyndsy says she’s incredibly grateful for everyone at the Colorado Fetal Care Center and the comprehensive assistance they provided. “All of our primary nurses and everyone on our care team was amazing, and they helped us so much throughout our entire stay,” Lyndsy says. “It really made me feel cared for and made the experience much more comfortable.”

For more information about the Colorado Fetal Care Center, please visit childrenscolorado.org/Fetal-Care.

“All of our primary nurses and everyone on our care team was amazing, and they helped us so much throughout our entire stay. It really made me feel cared for and made the experience much more comfortable.” LY N D S Y, E L L A’ S M O M

© Children’s Hospital Colorado 2020 All rights reserved. Children’s Hospital Colorado complies with applicable Federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex. • ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-720-777-1234. • CHÚ Ý: Nếu bạn nói Tiếng Việt, có các dịch vụ hỗ trợ ngôn ngữ miễn phí dành cho bạn. Gọi số 1-720-777-1234. CFCC-180144A-2021-01

World-class expertise for pregnancies and unexpected situations

As Sacramento’s No. 1 hospital and one of Newsweek’s Best Maternity Care Hospitals, we understand that you and your baby’s needs are unique. That’s why our experts work together to provide safe and ready world-class fetal care, so you and your little one can live a healthier life. With advancements in fetal surgery, the best expertise for high-risk pregnancies and unexpected situations, plus a renowned research program providing new hope for expecting parents, you’ll always have an extraordinary team behind you with the UC Davis Fetal Care and Treatment Center.

Proud to offer: ■

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Access to numerous clinical trials and the latest diagnosis and treatment options The region’s only nationally ranked level IV Newborn ICU Inland Northern California’s only fetal care and treatment center A state-of-the-art level I children’s surgery center with pediatric anesthesiologists and dedicated rooms available 24 hours a day

For more information visit

fetalcare.ucdavis.edu 20

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The Fetal Health Foundation loves partnering with Steward Partners, as well as other contributing forand non-profit organizations, in helping to further awareness and education around high risk pregnancy, and more specifically, fetal syndromes and the current climate by which we are all impacted. The Foundation created Fetal Care Chats as an easy way to meet with the experts live and via social media channels, whether near or far, in fulfilling this purpose. A few of our most recent Fetal Care Chats include: Fetal Care Chat: COVID Care + Pregnancy Guest panelists included Dr. Ken Moise, MFM and High Risk Pregnancy Specialist, and wife, Karen, RN, as well as Jennifer Jones, RN, and pregnant mom, Amanda Saunders. Content focused primarily around how pregnancy, and specifically higher risk pregnancies were being impacted by fetal center shutdowns, as well as whether or not pregnant women were more susceptible to being infected with COVID-19. Fetal Care Chat: TAPS Support Guest panelists included Stephanie Ernst, Founder of the TAPS Support Foundation, as well as clinical speakers, Drs. Femke Slaghekke and Enrico Lopriore, both of Leiden University Medical Center. Content centered around TAPS treatment and support, research efforts being conducted, and improving outcomes for TAPS patient families. Fetal Care Chat: Women in Fetal Medicine Guest panelists included Dr. Jena Miller of Johns Hopkins, Dr. Courtney Stephenson of Piedmont Medical Center, and Dr. Diana Farmer of UC Davis Children's Hospital. The focus was around obstacles women face within the fetal medicine community and celebrating pioneer women within the industry. You may find these and more videos on the Fetal Health Foundation's Facebook page, under Videos.

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special feature

celebrating 25 years of fetal medicine and the lifechanging innovations to come special editorial submitted by friends steward partner center for fetal diagnosis and treatment at children's hospital of philadelphia

For 25 years, the Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia has worked tirelessly to advance the field of fetal medicine and offer lifesaving care for pregnancies diagnosed with birth defects. Here, we highlight past advances and look ahead to advances on the horizon. Madison is a bright young adult studying to become a doctor. It’s hard to imagine that before she was born, she was diagnosed with a birth defect and given just a 60% chance of survival. She is one of many individuals whose lives were transformed because of the care they received before and after birth at the Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia (CHOP). This year marks the 25th anniversary of

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the Center, the largest and most comprehensive program of its kind in the world. Over that time, more than 27,000 expectant families from all 50 states and more than 70 countries have done what Madison’s family did and turned to CHOP’s expert fetal team for hope and help. Making ‘science fiction’ a reality “In the beginning, there was a huge amount of skepticism about the idea of treating birth defects while a baby was still in its mother’s womb,” says Center co-founder, fetal surgery pioneer, and CHOP Surgeon-in-Chief, N. Scott Adzick, MD, MMM. “When we spoke about it at medical conferences, few people in the audience took the idea seriously, and some people thought we were crazy. But we weren’t.” Adzick and Center co-founder and Executive Director, Lori J. Howell, DNP, MS, RN, were trailblazers of the field of fetal medicine. Together, through three decades of hard work, dedication and innovation, they and the entire multidisciplinary team have improved the lives of children with birth defects across the world. Thanks to their efforts, tumors can be removed, defects repaired, and conditions that threaten twins corrected, all while children are still inside their mother’s womb. Doing so can minimize — and in some cases, even prevent — the damage caused by the birth defect. Today, the team has grown exponentially. Under the continued leadership of Adzick and Howell, as well as Julie S. Moldenhauer, MD, the Center’s Director of Obstetrics, CHOP has the most experienced

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fetal diagnosis and treatment team in the world. The skilled team has trained the next generation of fetal medicine clinicians, including fetal surgeons, maternal-fetal medicine specialists, and fetal experts in radiology, anesthesia, neonatology, pediatric/surgical subspecialties and long-term care, through several elite fellowship programs. Myriad milestones Throughout the past 25 years, myriad milestones have been set by CHOP’s fetal team, many of them firsts in medical history. Here is a look back at some of their achievements: • First-ever fetal surgery at CHOP • In 1995, when Felicia and Roberto Rodriguez traveled from their home in Florida to CHOP, the newly opened Center was one of only two programs worldwide capable of treating birth defects in utero. Dr. Adzick and his team performed the first-ever fetal surgery at CHOP to treat their son Roberto Jr.'s lung lesion. Roberto was born completely healthy, was a star baseball player growing up, and is now an active young adult making his way in the world. Today, CHOP’s team has performed more than 2,000 fetal surgeries and is the undisputed world leader in fetal surgery. • Pioneering fetal surgical techniques • CHOP developed many of the surgical techniques used to treat conditions, including myelomeningocele (MMC), the most severe form of spina bifida, before birth. CHOP also led the Management of Myelomeningocele Study (MOMS), a groundbreaking study published in 2011 that

proved that fetal repair of MMC can improve a child’s chances of being able to walk independently and reduce their chances of needing a shunt tube to drain fluid from the brain. • Advancing prenatal imaging techniques • CHOP has been at the forefront of prenatal imaging techniques since the Center’s inception, including developing fetal MRI, which along with detailed prenatal ultrasound, is used to provide an extraordinarily accurate picture of the fetus. This allows CHOP’s team to better discuss how an abnormality will affect the pregnancy as well as the child’s future prognosis. Beverly Coleman, MD, Director of Fetal Imaging, oversees a robust team of specialized fetal radiologists and sonographers, all of whom are focused on providing the most accurate prenatal diagnosis for some of the rarest conditions. • First-ever delivery unit of its kind • In 2008, CHOP opened the Garbose Family Special Delivery Unit (SDU), the first comprehensive birth facility in a freestanding pediatric hospital designed specifically for healthy mothers carrying babies with birth defects. The SDU has revolutionized the birth experience for families by keeping mother, baby and family in one space for labor, birth and the postpartum experience. More than 4,500 deliveries have taken place in the unit since it opened, and the obstetrical team has grown to include maternal-fetal medicine specialists, obstetricians, nurse midwives, labor and delivery nurses, and others.

• Establishing support services for families • CHOP was instrumental in establishing the fetal therapy coordinator as a vital component of the fetal care team. The fetal therapy coordinator is the first point of contact for families and guides them through every step of care. The Center’s robust psychosocial support team, which consists of social workers, psychologists, psychiatrists, child life specialists and a chaplain, also helps patients and their families cope with the emotional hardship of a fetal diagnosis. This team leads CHOP’s Perinatal Palliative Care and Bereavement Program, which offers specialized support for families who learn their baby is at high risk of dying either before or shortly after birth. Providing the best possible experience for families Each member of CHOP’s team has dedicated their entire career to advancing the field of fetal medicine — and improving outcomes for children. From the anesthesiologists who ensure the safety and comfort of two patients simultaneously during groundbreaking fetal procedures, to the cardiologists in the Fetal Heart Program (FHP) who diagnose heart problems as early as 12 weeks’ gestation; from the specialists on the Neonatal Surgical Team who care for challenging and complex surgical neonates, to the multidisciplinary Pulmonary Hypoplasia Program team, one of the few in the world to provide long-term multidisciplinary care to children with conditions that limit lung growth. Their combined commitment to providing families the best

possible experience recently earned special recognition by Press Ganey, a company that measures patient satisfaction. Advances on the horizon As the largest fetal care center in the world and a pioneer in fetal research, CHOP’s Center for Fetal Diagnosis and Treatment has advanced the field in unbelievable ways. Since 1995, the Center for Fetal Research has pushed the boundaries of what is possible in an effort to offer hope to more children affected by congenital conditions. Now on the horizon are innovations that promise to transform the next 25 years of fetal care. The research team is leading cutting-edge discoveries in gene therapy, gene editing, tissue engineering, minimally invasive treatment approaches, and the creation of a womb-like device to support extremely premature infants. Researchers in the Center for Fetal Research are also working to address complex conditions like congenital diaphragmatic hernia with novel prenatal and postnatal therapies and delineate new pathways that may be helpful in treatment. The cause of most birth defects is still unknown because large studies have been lacking. The Center for Fetal Diagnosis and Treatment is a unique resource that offers the opportunity to enroll a large population of mothers carrying a fetus with a birth defect. The Birth Defects Biorepository (BDB) — launched in 2019 — is a coordinated effort that harnesses the expertise of the Center’s genetic counselors to gather and analyze genetic

information from mother, father and baby to unravel the mysteries of birth defects. “Better understanding of the interrelation of mother and baby can improve the outcome for both,” says Moldenhauer, who notes that the BDB will be instrumental in improving prenatal management and outcomes after fetal surgery, and determining how fetal conditions and their treatment place mothers at increased risk for complications. The Center for Birth Defects Outcomes (CBDO) is another initiative that supports reporting real-time clinical outcomes for patients with an innovative software platform. This information is critical to guide family counseling, adapt and improve care for future patients and their families, and support decision-making for patients, their physicians and insurance companies deciding among competing care options. The CBDO complements CHOP’s already robust fetal clinical research team, building on decades of birth defects research.

Center for Fetal Diagnosis + Treatment at Children’s Hospital of Philadelphia An internationally recognized leader in fetal diagnosis, fetal surgery and fetal care. Support for mom and baby, every step of the way. 800-468-8376 fetalsurgery.chop.edu connexions

Pregnancy, labor, delivery and newborn care are some of the most life-changing events anyone can go through. Unfortunately, pregnancy can come with its own surprises and risks, and as such, is not always a joyous and sentimental time. Unexpected complications arise during pregnancy all the time. While many of these complications can be prevented or treated, it's best to be cautious and prepare yourself or the expecting mother for anything that may come up. Below are some of the most common complications that arise during pregnancy, labor and delivery. Be sure to note any signs of complications and know when it's time to call or see your doctor. 1. Preeclampsia Preeclampsia is another common health concern during pregnancy. Inducing high blood pressure, it can also cause severe swelling and heart failure in pregnant women. If a pregnant woman experiences discolored urine or unusually high blood pressure, she should contact her doctor immediately.

pregnancy + delivery: 5 unexpected complications by kiley morrow

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2. Bleeding Bleeding in the early stages of pregnancy can signal several issues, but is likely a sign of implantation. Many women experience spotting in the early weeks, and as long as it is not combined with cramping or heavy bleeding, it should be fine to simply mention it to your doctor. It should last no longer than hours to a few days. Bleeding during the later stages of pregnancy can be a sign of a deeper, more problematic health concerns such as: ● Miscarriage ● Cervical infection ● Vaginal infection or tears

● Placental abnormalities ● Ectopic pregnancy If a pregnant woman experiences bleeding or spotting in late pregnancy, she should see a doctor immediately to diagnose the cause. Often, women ignore spotting during pregnancy, chalking it up to a "normal experience." Unfortunately, bleeding can be a symptom of deeper issues that may threaten the mother and her baby's health. 3. Miscarriage Miscarriage is every mother's greatest nightmare. Miscarriage is a fetal loss that typically happens before a woman reaches 20 weeks of gestation. On average, miscarriages occur before 12 weeks of pregnancy, and often bring about internal complications as well as resulting grief and sorrow from all that was lost. According to the March of Dimes, miscarriage is quite common, happening to 10-15% of pregnant women. Recent technological developments in medical research have made it easier to predict a miscarriage and possibly prevent one before it happens, but most still occur spontaneously and with no known cause. 4. Preterm Labor Preterm labor is another complication that may be at fault for bleeding or spotting. Preterm labor happens when a woman enters labor before reaching 37 weeks of pregnancy. Cramping or a tightness from contractions may be noticed, but depending on how early it occurs, you may or may not feel this sensation.

Preterm labor can sometimes be stopped or managed to buy a little time for the mom and baby, but often results in premature children and can harbor several other health concerns for both the mother and her child. While premature birth is not uncommon and can be a non-issue, it can be deadly. It's crucial to maintain open communication with your doctor to ensure that preterm labor can be prevented or avoided altogether. 5. Cardiac Arrest Cardiac arrest is a common issue that many people of any age, gender, or place in life can experience. It is often caused by other underlying problems such as excessive bleeding, heart failure, preeclampsia, and amniotic fluid complications. Maternal cardiac arrest is a concern that many women don't consider, but can happen during or after childbirth. When a mother enters cardiac arrest, her heart malfunctions and momentarily stops beating. Unless attended to right away, the event can be fatal. A common reason women experience cardiac arrest during pregnancy is due to the oxygen consumption of the fetus and a lack of oxygen flow in the blood. During pregnancy, women consume 20% more oxygen and experience increased cardiovascular metabolism. This can result in maternal cardiac arrest and requires immediate CPR or defibrillation.

CPR in Pregnancy There are three main steps to follow when a pregnant woman experiences cardiac arrest, at least until first responders arrive. Step One - Call 911 Immediately If you witnessed the scene, inform them of what happened and that the patient is pregnant so they are as prepared as possible when arriving on the scene. Step Two - Begin CPR Lay the mother on her back on a flat, hard surface like a floor. Place your hands on the center of her chest with one hand atop the other. Press down on the chest so that they go down about two inches per compression. Perform the compressions at 100 beats per minute. Many people recommend singing the song Stayin' Alive by the Bee Gees in your head to maintain the proper rhythm. Perform 30 compressions before doing two mouth-to-mouth breaths. Continue compressions until medics or first responders arrive, or an AED is provided. Step Three - Power on the AED Nearly all AEDs will provide a recording telling you a step-bystep process of using the machine. Final Thoughts While pregnancy can bring about complications, it is most important to maintain frequent and open communication with your doctor. Noting any changes or abnormalities throughout the pregnancy may help prevent some of the more serious complications from arising, ultimately saving the health of you and your baby.

Kiley took the big leap from working a 9-5 to quitting, getting out her laptop, and becoming a freelancer. Since then she has found her passion in writing valuable, informative lifestyle and travel articles. After traveling for years, Kiley knows just how valuable a quick how-to guide can be for readers, which is why she contributes guest posts to various blogs.

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from diagnosis to delivery and beyond

At Cincinnati Children’s Fetal Care Center, our innovative treatment options bring real hope to patient families. Led by physicians from Cincinnati Children’s, TriHealth and University of Cincinnati Medical Center; we are dedicated to exploring the unique challenges that face each patient and unborn baby, from diagnosis to delivery and even care after birth.

Our Innovation, Your Hope Our team can perform advanced treatments and procedures that only a few fetal centers in the country can offer. These procedures offer benefits to both mom and baby. In some cases, they offer an increased chance at survival for the baby. In others, they provide a less invasive surgery option for mom, with consistent outcomes for baby. “We’re pioneers of these approaches --- and one of a few in the world that can do them,” says Dr. Jose Peiro. special editorial submitted by friends steward partner cincinnati children's fetal care center

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The center performs a wide array of treatments for an even wider array of fetal conditions. Here are a few example summaries of the innovative interventions we offer:

• Fetoscopic Endoluminal Tracheal Occlusion (FETO) for Congenital Diaphragmatic Hernia (CDH) Cincinnati Children’s was one of the first places in the nation to offer this minimally invasive procedure that involves inserting a tiny balloon into the fetus’ trachea. Performed by one of the most skilled and experienced teams of physicians in the world, this offers babies with severe cases of CDH a real chance at survival. “In severe cases of CDH, the survival rate ranges from less than 20% to 50%, but with FETO, we’re seeing a huge improvement in odds of survival,” said Dr. Foong-Yen Lim. “Right now, it looks like survival rates as high as 80-90% are possible, and we’re still learning.”

• Fetoscopic Repair for Myelomeningocele (MMC) We can do prenatal repairs for MMC while the baby is in utero. Our surgeons have considerable experience performing both open and fetoscopic fetal operations. Fetoscopic surgery for MMC takes place between the 19th and 26th weeks of pregnancy. Unlike in the open surgery where the doctor makes an incision across the mother’s abdomen and opens the uterus, the fetoscopic procedure is much less invasive. The neurosurgeon removes the myelomeningocele sac, if one is present, and repairs the spinal defect in layers before closing the skin to protect the spinal cord from exposure to amniotic fluid. “With the fetoscopic procedure, we’re able to achieve the same positive newborn outcomes as with open surgery. The baby does better after birth and it’s

much less risk with far fewer complications for mom,” says Dr. Jose Peiro.

• Carpediem™ Machine As one of a few centers in the world to offer this breakthrough technology, the Carpediem™ Machine provides dialysis in the newborn intensive care unit (NICU). Rather than modifying the adult machine like most other centers, our Carpediem™ Machine is specifically designed for babies. It removes excess fluid caused by acute kidney injury or kidney failure, requiring dialysis from babies who are anywhere from 5-20 pounds. “The Carpediem™ Machine

revolutionizes care for babies who might require it and makes more care options available to them,” says Dr. Sammy Tabbah. Our Nephrology Program is one of the best in the country --- and we are one of a few centers that have a dedicated team managing newborn dialysis for our smallest patients. Our team provides care for the mother and baby, from inutero therapy to newborn dialysis, and finally, to transplant when the time comes.

Long-Standing Excellence Cincinnati Children’s Fetal Care Center is well-established and has been treating patients with complex fetal conditions for

“This is truly an extraordinary center. We are passionate in what we do, and we take the extra time to care for our patients for better outcomes. We go the extra mile.” – Mounira Habli, MD

A patient family meets with a multidisciplinary care team at the Fetal Care Center.

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Dr. Lim, Director of the Fetal Care Center, consults with a patient family before treatment.

more than 15 years. In that time, we have evaluated over 6,800 patients and performed more than 1,925 fetal surgical procedures. Our team can perform advanced treatments and procedures that only a few fetal centers in the country can offer. We also offer a full spectrum of care, from diagnosis to intervention to obstetrics and delivery, and provide long-term care from expert specialists for the life of the child. Plus, when you choose our center, you’re also choosing Cincinnati Children's Hospital, one of the top pediatric hospitals in the country.

Experience, Expertise, Excellence Our center is staffed by experienced, expert providers who are leaders in their respective fields. They will meet with you to help you understand your options, provide supportive care and non-directive counseling, and help set expectations for your journey. They work with your primary OB/GYN or maternal-fetal

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medicine specialist to formulate a collaborative plan of care for your peace of mind.

One Team, One Roof The Fetal Care Center, a leader in innovation, research, and education, is a collaboration of three health organizations − Cincinnati Children’s, TriHealth and University of Cincinnati Medical Center. These organizations bring together extensive medical resources in a single setting, which allows our team to offer comprehensive care for mothers and babies facing the most complex fetal conditions or high-risk pregnancy and delivery. We focus on a holistic management of care. By involving subspecialists to guide your journey at every step, you never have to worry about managing communication with separate providers. We approach everything together as a team to determine the right plan of care for you and your baby—all based on your individual needs and feedback.

“We offer the full package, starting from time of counseling and ending with longterm follow up care for your child.” – FoongYen Lim, MD

Cincinnati Children’s Fetal Care Center We are here to provide you and your baby with personalized care, from the day of your diagnosis to the day you bring your baby home. Our Fetal Care Center is set up to provide outcomes that can change the path of your baby’s life. Contact us for more information and resources. We’re available for consultations, transfers, or referrals 24 hours a day, seven days a week.

1-888-338-2559 info@fetalcarecenter.org www.fetalcarecenter.org

The Fetal Health Foundation, through its Fetal Therapy Think Tank program, is committed to improving quality of life, and fetal syndrome, anomaly, and patient family outcomes. We are taking a bold step towards that goal by creating and implementing a voluntary Certification Program, and forging ahead with innovative fetal research, surgery, and facility design. It's clear that we’re stronger together. To learn more about or join this collaboration, visit fetaltherapythinktank.org.

FETAL THERAPY THINK TANK

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W covid-19 + pregnancy: emerging information to know

by c. anne patterson, m.d. and tanya mack, rn

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Within the past year of the global COVID-19 pandemic, much has been learned about the effects of this virus during pregnancy, but there are still many questions and much more to learn. Emerging information changes frequently. COVID-19 vaccination, viral transmission, and the effects of COVID on pregnancy are paramount for many pregnant women globally. In general, emerging information in this field is sparse, but what is surfacing is reassuring.

COVID-19 Vaccines + Pregnancy Current Vaccination Recommendations: Pregnant women were excluded from the initial clinical trials by the COVID-19 US vaccine manufacturers. It is also understandable for people to be apprehensive about any new vaccine. Whether pregnancy increases a women’s susceptibility to COVID-19 viral infection is also unknown. Most of the current experience has come from vaccine trial volunteers who became pregnant during the clinical trials. The UK documented 53 pregnancies that occurred during trials of 3 vaccines. To date there have been no reported adverse outcomes from the various COVID-19 vaccines as it relates to pregnancy or the fetus. Nearly all vaccines are allowed in pregnancy if the benefits outweigh the risks --- with the exception of liveattenuated viruses (like the MMR vaccine). Since mRNA is the primary mechanism in the effectiveness of the first two COVID-19 vaccines in the US, there should be no adverse outcome for the fetus. This has been demonstrated form 16 years of experience with reassuring results in other mRNA vaccination. Accepting the COVID-19 vaccine while pregnant is a personal decision; accurate information helps patients make this decision. Although more studies are underway on this topic, top agencies have weighed in. The American College of Obstetrics and Gynecology (ACOG), the Centers for Disease Control

(CDC) and the Society for Maternal Fetal Medicine (SMFM) all recommend that pregnant women who meet the current criteria for vaccination discuss the COVID-19 vaccine with their healthcare provider and subsequently, may choose to be vaccinated. The World Health Organization reworded its advice on this topic in January 2021 stating that there is “no reason to believe that the risks outweigh the benefits of pregnant women being vaccinated for COVID-19.” As of February 2021, greater than 20,000 pregnant women in the US have received the COVID-19 vaccine and “no red flags have been raised.” COVID-19 Vaccination and Breastfeeding: ACOG currently recommends that COVID-19 vaccines be offered to lactating women who meet the current vaccination criteria. COVID-19 Vaccination and Fertility: So far, there has been no evidence of COVID-19 vaccines affecting fertility. Still, some rumors surfaced earlier this year suggesting antibodies elicited by the COVID-19 vaccine affect a women’s fertility, but this rumor has since been refuted by the scientific community. There is no clinical evidence that indicates that the COVID-19 vaccine prevents pregnancy in humans. Similarly, follow-up of the vaccine trial volunteers, who became pregnant during the clinical trials, has shown no documented detrimental effect of vaccination on early pregnancy. COVID-19 Transmission During Pregnancy + Post-Partum Intrauterine Transmission: Intrauterine transmission has been documented, but appears

rare for unknown reasons. Less than 1% of newborns born to COVID-19 positive mothers tested positive after delivery. However, it is unknown whether transmission occurred in utero or at delivery. This is presently being evaluated. In one CDC study, 42 infants born to COVID-19 positive mothers tested positive for COVID immediately at birth. However, 1,160 of the followed infant group in the study tested negative. Most hospitals have instituted new COVID policies that include labor and delivery. Women presenting to the Labor and Delivery (L+D) unit are now routinely screened for COVID infection and CDC precautions are followed closely. Many hospitals have also changed other Labor and Delivery policies to adapt to the COVID pandemic. For example, most hospital L+D units restrict those attending the birth process with the mother to one person. Obstetricians are also utilizing telehealth calls for postpartum follow-up appointments versus in-person visits. Transmission via Breastmilk: Mother to infant COVID transmission in the post-partum period via breastmilk appears “unlikely”, especially when using precautions like: wearing a mask during breastfeeding, washing hands, breast hygiene, and following other recommended CDC guidelines. COVID-19 Infection During Pregnancy General Study Findings: Findings relating to the effect of COVID-19 infections in pregnant patients have been inconsistent and are continuing; however, some significant facts have emerged at the one-year

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mark of the pandemic. One study that followed women who were infected with COVID-19 just prior to conception or were infected in early pregnancy, were no more likely to miscarry than the general population. A CDC study of > 450,000 women infected with the COVID-19 virus during pregnancy indicated that pregnant women, as a group, are at risk for severe complications of COVID-19. A JAMA Insight communication from February 8, 2021 reported that some studies suggest that pre-term birth might occur more often for infants born to COVID-19 infected mothers. Another study demonstrated that pregnant patients with a COVID-19 infection might be more likely to have increased risk of advanced pregnancy complications, especially if they also had comorbidities such as obesity, hypertension, and diabetes. According to a recent report in Beckers Hospital Review dated February 4, 2021, in the US, from January 22 to February 1, 2021, 64,075 pregnant women tested positive for COVID-19 during their pregnancy. Of these women, there were 74 COVID-19 related deaths. Again, studies are showing that it is plausible that COVID-19 vaccination will reduce these risks. New Study Findings on Pregnancy Complications with

Severe COVID-19 Cases: A recent study released by the University of Utah in February 2021 reported that pregnant women, who contracted COVID-19 while pregnant and showed severe COVID-related complications, were at increased risk of dying or having serious complications when compared to infected patients who were asymptomatic or experienced mild to moderate COVID symptoms. This study examined 1,219 pregnant women who tested positive for COVID in a 5-month time period in 33 hospitals across 14 states in the US. Most of the women in this study were in their third trimester. Regarding COVID symptoms: 47% were asymptomatic, 41% had mild to moderate symptoms, and 12% had severe or critical symptoms. Here are some of the results: *12% of the women who became critically ill had comorbidities (HTN, diabetes, liver disease or obesity) *These women were at risk for poor advanced pregnancy outcomes (pre-term births, ICU admissions, hemorrhage) *60% of these patients had a C-section delivery and 50% had NICU babies *Women with mild to moderate symptoms did not have greater risk of advanced pregnancy complications

*0.3% died due to COVID-19, which was higher than expected Conclusion While learning continues across the globe as it relates to the effect of COVID-19 and all aspects of pregnancy, there are still many questions to be answered. COVID-19 vaccination during pregnancy is recommended and consistently appears to reduce the risk of advanced COVID-19-related pregnancy complications. Patients can follow the updates on this topic on the CDC, WHO, ACOG and SMFM websites for the latest information. RESOURCES: Male, V. Are COVID-19 vaccines safe in pregnancy?. Nat Rev Immunol ). https://doi.org/10.1038/s41577-02100525-y. Published 03 March 2021. Metzger, Kylene. “New Research Finds Pregnancy Complications in Severe COVID-19 Cases.” Healthcare, University of Utah. https://healthcare.utah.edu/ healthfeed/postings/2021/02/ covid19-pregnancy-research.php. Published 12 February 2021. Rasmussen MD, MS Sonja A. and Jamieson, MD, MPH, Denise. Pregnancy, Post-Partum Care and COVID-19 Vaccination in 2021. JAMA Insights. https:// jamanetwork.com/journals/jama/ fullarticle/2776447. Published 8 February 2021

Women's Telehealth was formed by a group of board certified physicians and women in the health care industry that had become adept at using healthcare technology, and had ties to the rural Georgia obstetrical community. They noticed that some patients in rural areas had to travel hours to receive the proper care or were transferred to a specialized facility, costing them significant expense and inconvenience. Women’s Telehealth recognized that they could provide direct access to these specialties via telemedicine, saving patients time, effort, and money. Telemedicine has revolutionized the industry, and is changing how patients receive healthcare and how physicians provide services, with many advancements along the way. To learn more, visit womenstelehealth.com.

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The Johns Hopkins Center for Fetal Therapy

You didn’t plan for this. We have. A diagnosis of a fetal problem while pregnant can be overwhelming. We know. But our dedicated team of experienced physicians at the Johns Hopkins Center for Fetal Therapy are eager to guide you through your care path from fetal diagnosis and treatment to coordinated newborn care and beyond. As one of a handful of hospitals in the country to perform the full range of complex fetal procedures, the Johns Hopkins Center for Fetal Therapy is equipped to provide comprehensive care for you and your baby. We evaluate and treat many complex conditions, including: • Congenital Diaphragmatic Hernia (CDH) • Spina bifida: Fetoscopic and open myelomeningocele (MMC) repair • Twin transfusion syndrome (TTTS) • Discordant anomalies or growth (sIUGR) • Amnioinfusion for lethal fetal urinary disease • Intrauterine treatment of fetal blood diseases We work every step of the way to coordinate a continuum of care that offers the highest chance of survival and quality of life.

Adrienne and Jim Walsh found out that their unborn baby girl, Autumn, had a diaphragmatic hernia that threatened her survival. An in-utero procedure was performed and the neonatal team provided life-saving intensive care after she was born. The Walshes’ are grateful for the coordinated support.

“We were up against some hard decisions. I would tell any family facing this diagnosis to see fetal therapy physicians at Johns Hopkins. Talk to a specialist, and do what’s right for your family.” —Adrienne Walsh, grateful mom

Visit us at hopkinsmedicine.org/fetal-therapy or call us: 410-502-6561

hanging by a heart string

Grief is a funny thing, you can be overwhelmed with joy thinking of a memory of your loved one and then in the next second be blinded by the tears that won’t stop flowing. It's a constant tug of war over your heart, emotions, and quite honestly, your physical well-being. For over fifteen years, my soul has been in the back and forth battle within. If you saw me from a distance or scrolled through my social media account, you may not even know how my first son was here for only 52 days. At first glance, I have my life together. At first glance our family may appear perfect. But “at first glance” doesn’t show you the whole story, or all the broken pieces within. In the summer of 2004, my husband and I began a romance right out of the story books. We fell hard and fast, marrying just eight months after dating. After moving sixteen hours from our hometown, to begin our life together we found ourselves pregnant just a few months after marriage. Naturally, we were both terrified and thrilled to welcome to the world our first son. Everything was normal about our pregnancy and delivery, until it wasn’t.

by candice deleeuw

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As we were settling into the idea of being parents, laughing and sleepily in the “honeymoon” phase of a new baby, we were bombarded with staff and the discovery that something had gone horribly wrong. Just 18 hours after birth, our baby was taking his first flight to Duke University Medical Center in North Carolina. As parents, we were left in shock and anxiety over what exactly was happening to our “perfect” son. It was as if the storm headed our way was too powerful to avoid.

It was in the wee hours of the morning standing alone in a hallway, my husband received the diagnosis. Our son, Alexander Cole, had a congenital heart defect, Hypoplastic Left Heart Syndrome. He would need open heart surgery soon to save his life. The dam had broken. The storm was far greater than we could ever imagine. At just six days old, our son underwent open heart surgery on his heart the size of a walnut, the first of a minimum of three. There are few words to describe the experience of hearing such news and then facing the reality of it so quickly. It is much like a trance-like state where you can hear everything, but it is hard to imagine any of it is real. Early the next morning, as we continued to sleep after a long day of waiting on him in the Operating Room, Alex coded. He was gone for 20 minutes while the team worked to bring him back to us. Until this point, I didn’t believe it was possible for him to die; my baby was coming home. As our surgeon reached into his still open chest (normal for infants after open heart surgery), he gently massaged our son's heart between his fingers until Alex returned. Being awakened by multiple phone calls and then directed to come to the hospital, no one could prepare us for what we would see; more tubes, more wires, more machines, in addition to the already open chest. I can still feel the tears well up inside

and take away my breath as I remember what it was like seeing him in this state. I would not wish it on my worst enemy. This difficult night caused a long road that would never lead to recovery. After watching him suffer and never fully recover from each set back, we knew it was time to say goodbye. While surrounded by our new “family,” the staff at Duke, we let him leave our arms and awake in the arms of Jesus. I wish I could tell you every detail that led to this decision and the many emotions that came after, but that would require more space. I also wish I could tell you that grief gets easier. It never gets easier, it just gets different. With each year that passes, you learn a little more about your strength and a little more about a parent's love. In finding strength, I have also found purpose. After a storm, there is always a rainbow. There were too many lonely days after losing Alex, days that felt like no one else understood and I thought I was going insane. I wanted to help

other moms know they are not alone. In the fall of 2020, I launched a new book HOPE (Amidst the Stories I Told Myself): How to Find Hope in Love and Loss, as well as it’s companion book Forever A Momma. For every HOPE book sold, we are able to provide a copy of this book to our partnerships (such as the Fetal Health Foundation) through Hope in Healing Hearts. Our mission is to provide hope through resources and community for those who are healing from life’s heartbreaks. We want every parent to be able to have a piece of HOPE in their darkest moment. Do you know someone struggling with grief from the loss of a child? HOPE and Forever A Momma is the perfect tool to help them not only know they are not alone, but to work along the path of healing. If you would like to donate to this cause or know an organization that could benefit from having copies of HOPE to give to grieving parents, please visit hopeinhealinghearts.org.

Candice's newborn son, Alex; Hope and its companion, Forever a Mama

Candice is an author, speaker, mom, wife, and owner/President of Hope in Healing Hearts who live in the Charlotte area. Her passion is to help moms find their purpose in the pain. You can often find her on the sidelines of a soccer game, the audience of a dance competition, or the stands of a MMA match cheering on her children, but always with a coffee in hand.

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photos courtesy of DirectMedia from StockSnap

creative ways to entertain your littles at home

by talitha a. mcguinness

If there's one thing for certain, it is that as parents, we sometimes have to get extremely creative with entertaining our younger children. During a year when a pandemic took over the globe, families were forced to stay home like never before. This was hardest on families accustomed to being "on the go", when keeping busy with sports, traveling to explore new-tothem places, and participating in after school or extracurricular activities like Scouts, music or theater lessons, etc. came to a screeching halt. If you have smaller children, here are some great ideas for keeping them busy and entertained at home (requiring no additional device time). Camp Out Have a tent handy? Pop it up in the living room or bonus room to give your area a different and more exciting feel. No tent? No problem! Use sheets or larger blankets that can easily be draped across chairs and other furniture to provide the same effect. You can string fairy lights underneath to make it even more special and alluring. However, no need to get fancy. Just have some flashlights on hand, toss in a few pillows and blankets, and perhaps some snacks,

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and enjoy reading books together, playing board games, or even switching off the lights at night time and enjoying a favorite show or movie together as a family.

your floors (this is best on vinyl or pergo type flooring). Let them use their cars, trucks and other rolling vehicles to see who can finish the "roadtrip" first.

Scavenger Hunt There is nothing more fun than finding hidden objects. You can play along using things that are already visible (think things in nature or along the road as you travel), or you can use plastic eggs or other small containers in which to place your objects, or even hide things in plain sight (depending on age). Pick a theme, find the objects that will go perfectly with your theme and then create a sheet for your kids to check off as they find each item. Hide everything and set them loose to find all the objects on the list. This doesn't have to be an activity isolated to home and the backyard. If you drive around often, it could be fun to help the kids hone their observation skills by "hunting" for certain color vehicles or things like churches, the library, post office, etc. This skill also helps orient them to their neighborhood and community.

Move Like an Animal - find or make a card game that instructs them to "hop like a bunny" or "crawl like a crocodile".

Family Game Time We all loved playing games as a kid, and that is something that for most of us, lasts even into adulthood. Depending on your kids' ages, find games they can play with ease and understanding without getting too frustrated. Extra points if you can find games to help them get moving. A few suggestions by age include: 1-2 years old: Color matching - use hoola hoops to place an item of each color inside. Encourage your toddler to find other items around your house and place them within the coinciding hoola hoop. The Race Is On - use painter's or masking tape to map out roads on

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3-5 years old: Twister - a classic game to get everyone all tangled up and laughing at themselves. It's hard to be mad when you're laughing! Hide + Seek - another classic game that most kids love. Great for counting and gross motor skills! Duck, Duck Goose - this game will get them red-faced and sweaty really quickly! Hot Potato - use any item as the "potato", but the object is to get them passing quickly so that when the music stops, they aren't the one holding the "potato". Musical Chairs - another game from most of our pasts, this one is fun for the whole family! Set out chairs (one less than the number of people playing), start the music, and let everyone move around the chairs until the music stops --- who will be left sitting on the ground? You can even take things up a

notch and make game time more like a carnival. Create easy games with things you already have lying around the house (or tucked away in the garage). Use the plastic kiddie pool to float some ducks and let them see who can find two of a kind first (just place colored stickers on the bottom). Use laundry bins and whatever balls you have in the playroom to create a ball toss. Have a small, play fishing rod? Let them fish over the back of the couch for shapes, colors, numbers, you name it. Mix it up every once in a while and let them "catch" a prize. You can even grab your face paints from the Halloween bin and offer a little face painting to complete the scene. Want to really impress them? Give out tickets as they play the games and let them redeem the tickets for little trinkets or snacks that you either already have or can easily purchase at the Dollar Store or through Amazon. Kids love tickets from games and they love getting prizes with their tickets even more! Create Art This activity from The Crafting Chicks may be best done outside, as it gets a little messy. On a piece of paper, (printer paper or watercolor paper will work perfectly), use a white crayon

to sketch whatever object or design you want (i.e. butterfly, flower, rainbow, etc.). Attach the piece of paper to your fence or side of your house, and give the kids several spray bottles, each filled with water and a different food coloring of your choice. Let them spray away and see how the design comes to life. You can also do this without the crayon step and simply let the kids enjoy creating something completely different and beautiful. You could also use sidewalk chalk and help your little ones create shadow art. Have them lie down in whatever position they like and outline them with your color of choice. Let them create patterns and other designs to fill the shadows, or they can get extra creative by adding fun details like balloons to make them look like they are flying, a bubble wand in their hands with bubbles floating in the sky, or any other thing their imagination creates. The options and possibilities are endless! Using items headed for the trash or recycling bin, encourage the kids to make "new" things. Put them in old clothes that you do not mind getting messy, give them access to washable paints, glue, safety scissors, construction paper, stickers, glitter, and more...all of which will help their imaginations soar!

The important thing in all of this engaging and entertaining is that you are connecting as parent and child or children. The more you play along with them, the more self-secure and confident they feel in what they're doing. Act Out Turn the negative of "acting out" into a positive. Pull out the old costumes from Halloweens and parties past. Let the kids have a little fun dressing up as their favorite character or something from their own imaginations. Encourage them to create skits or act out their favorite movies or shows while in costume and see what happens. You will be amazed at how well they play together when their creativity is allowed to be so free. If nothing else, it is good for a laugh for everyone, and you might even be inclined to join them! (Funny accents not required, but highly encouraged!) The important thing in all of this engaging and entertaining is that you are connecting as parent and child or children. The more you play along with them, the more selfsecure and confident they feel in what they're doing. Let Obstacles Get in the Way When the weather is nice, take every opportunity to spend time outside and get some fresh air. Give the kids a challenge by creating an obstacle course using

things in your own backyard. Use rocks or pavers for them to jump from one to the other (the floor is lava!). Let them run a set distance and see how far they can jump. Have old pool noodles? Snake them around the yard for the kids to follow to the next challenge. Use play tunnels to crawl to another obstacle or game. Another easy idea from Kitchen Fun with My Three Sons is to use kitchen string or even party ribbon to create a matrix between two or more trees; this activity will require more than moving --- they'll need to use their smarts to get through it without it breaking or falling down! Hopping over and climbing over and under every day yard items is sure to please kids of many ages. If it's hot outside, add in some water activities to cool them down. Think sand buckets filled with water and a large sponge. Let them toss the wet sponges back and forth until someone drops theirs. They'll love the challenge and getting wet in the process! Water balloon tosses are also a favorite. Each of these activities are sure to leave everyone ready for the hydration station, and maybe even a little quiet time with a good book (one can dream, right?). Enjoy each and every moment together, safely from the comfort of your own home and backyard!

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special feature

Learning your baby has a birth defect is news no family expects to hear. At 19 weeks pregnant during a routine anatomy scan, Maegan Camp and her husband learned their baby’s skull shape was abnormal and were told their unborn child may have spina bifida or another condition. They immediately scheduled an appointment to see a specialist to confirm the diagnosis. “It was the longest week and a half of my life, waiting to see the specialist,” Maegan said. When the specialist confirmed that spina bifida was their unborn baby’s diagnosis, they started to explore their options to give their child the best possible quality of life. “My sister-in-law is a doctor and told us to research fetal surgery as an option, so we started looking into centers that were close to home,” Maegan said.

fetoscopic spina bifida repair during covid-19 pandemic by rosie moore

special editorial submitted by friends steward partner texas children's fetal center 42 connexions

The Camps were thrilled to learn they were candidates for fetal surgery which would repair their unborn son’s neural tube defect while still in-utero and started the process to schedule the procedure. They couldn’t have anticipated what happened next. “COVID-19 started to spread everywhere and a couple of weeks before our window of time when we could have the spina bifida repair surgery, we got a call from the hospital saying our surgery had to be canceled – we were completely devastated,” Maegan said. Fortunately, the hospital connected them with Texas Children’s Fetal Center and the family traveled to Houston for testing. Maegan was able to undergo fetoscopic spina bifida repair three days after they arrived, when she was 25 weeks pregnant. In 2014, surgeons at Texas Children’s Fetal Center® pioneered a minimally-invasive two-port fetoscopic technique to repair spina bifida defects in-utero. The paradigmshifting technique allows surgeons to access the fetal spine in a minimally-invasive way to repair neural tube defects. This world-first fetoscopic approach involves placing two very small ports (4 mm) into the uterus to allow the use of a fetoscope and tiny surgical

instruments to repair the fetal spine. Texas Children’s has shown the benefits to the baby with this approach are the same as those obtained by teams using the large-scar approach, but, in contrast, after a fetoscopic spina bifida repair, the risk of preterm birth is significantly reduced. In fact, the average gestational age at birth of patients at Texas Children’s is 37-38 weeks compared with 34-35 weeks with the large-scar approach. It also lowers a mother’s risk of a potentially life-threatening condition called placenta accreta, in future pregnancies. Additionally, mothers can deliver vaginally, which is possible when open fetal surgery is performed. “Due to COVID-19, we had our pre-surgery conference virtually. Initially I was worried, but the doctors were so thorough and we felt very well taken care of,” Maegan said. After a successful fetoscopic spina bifida repair surgery, Maegan experienced some complications and stayed in the hospital for five days. She was then able to return to the couple’s Houston rental home, where they stayed for the remainder of her pregnancy with their toddler daughter. “Every week, we came back to the Fetal Center for checkups to monitor our baby’s progress, but a few weeks after my surgery, I experienced amnio separation and was admitted to the hospital to continue my pregnancy on bed rest,” Maegan recalled. Maegan’s son, Finn, was born at 35 weeks, 2 days and spent six weeks in the neonatal intensive care unit (NICU) before being discharged home. “A highlight of this experience

aside from Finn’s wonderful outcome is when we got to introduce him to his big sister, since she couldn’t visit him in the NICU. It was such a wonderful moment to witness,” Maegan said.

The Camp family is now enjoying their lives at home as a family of four. Now 8 and a half months old, Maegan reports Finn is doing wonderfully --- he loves his toys and dog and watching his big sister play and dance. “Finn is a very easygoing and relaxed baby! He’s met some milestones recently, like being able to roll over both ways and he’s working on sitting up. He’s also eating solids and sleeps through the night,” Maegan said. “We were told that without prenatal surgery, our son wouldn’t have any movement from his knees down – he’s able to move both legs and we are so thankful for the team at Texas Children’s Fetal Center!”

Texas Children’s Fetal Center® is one of the nation's leaders in the diagnosis and treatment of abnormalities in unborn and newborn infants. As one of only a few centers in the United States providing the full spectrum of fetal therapies, Texas Children’s is committed to delivering the highestquality care for the best possible outcomes. If your baby has been diagnosed with a fetal anomaly, you can reach Texas Children’s Fetal Center at: 832-669-3178 texaschildrens.org/fetal. connexions

Being pregnant can be a challenging time, especially when it comes to doing naturally easy every day things --- like sleeping. While sleeping might not seem like a problem at first, you’ll eventually see what we mean. Here are 6 tips to help you get a better night’s sleep while your belly continues to grow.

1. Clear Your Mind First

tips for a better night's sleep, while pregnant by kristin herman

“As you go to bed, you have to have a clear mind first,” says Holly Manton, a lifestyle writer at Essayroo and Paper Fellows. “If you struggle with stress and anxiety, then it’s important to talk about what’s worrying you with someone you know, or with a professional. Or, you can jot down how you’re feeling in a notebook. Talking and writing about your issues will not only demystify them, but also help you to calm down, especially at bedtime.”

2. Don’t Eat HeartburnTriggering Foods Before Bed

Heartburn can be a real pain (no pun intended). It can especially be a pain for you, if you’re expecting and trying to settle for bed. While it’s reported that hormones can cause your esophageal sphincter to relax and allow partially digested food and stomach acids to backflow (acid reflux), the growing uterus while you're pregnant can also contribute to heartburn. What foods can trigger your heartburn? According to Parents.com, it’s best to avoid these trigger foods: • Acidic foods (i.e. tomatoes, fruits) • Spicy foods • Fried or greasy foods • Coffee/caffeinated drinks • Chocolate

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As always, pay attention to how your body reacts to any kinds of foods that you eat. If it helps to keep track of things, keep a food

journal and write about how you react to certain foods, especially which ones give you heartburn.

3. Use Pillows + Prop

Pillows can be a good sleep aid for you. How? While bending the knees on your side is most effective in stabilizing you as you sleep, placing a pillow between your knees takes the pressure off your back. If dealing with heartburn, you can easily use pillows to prop, sleeping in more of an upright position. “The best way to ease the heartburn when trying to go to sleep is to keep your head higher than your feet. In other words, have someone adjust the bed to ensure the head of the bed is higher than the foot of it. Or, you can opt for placing pillows under your shoulders at night," says Poppy Dangar, a health blogger at Oxessays and State of writing. While on your side, you can also place pillows under your belly to help raise your abdomen and get back and hip support. Specialty pillows made for pregnancy are readily available online to ensure that you get a better night’s sleep while you’re pregnant. The point of pillows in general is to ensure that you’re comfortable at night.

4. Empty Your Bladder

This tip might seem weird, but you can’t go to bed without taking a pee first. In fact, according to Whattoexpect.com, frequent urination is one of the many symptoms that you’ll face during your pregnancy. As time goes on, you might find yourself going to the bathroom several

times during the night, which disrupts your sleep patterns. It is in part because of the pregnancy hormone hCG, which causes your blood flow and volume to increase in your pelvic area, thus causing your bladder to fill and aggravate those urinary urges. Even if you don’t feel like you need to go, take a few deep breaths to fully relax your pelvic floor and void your bladder. Going to the bathroom before bedtime will hopefully make you have less frequent late night (or early morning) bathroom trips, helping you get a better night's sleep.

5. Adapt A New Bedtime Routine While Pregnant

Bedtime should not only be something to get you energized for the next day, but it should also be a time where you unwind and feel at ease. So, why not make bedtime special? If you don’t have a set routine for bedtime, now is the time to adapt one. If you already have a set routine, why not tweak it by pampering yourself a little, too? Having an established routine that’s consistent and comfortable allows you to fall asleep easily. So, consider the following to help: • Try a warm cup of milk or caffeine-free tea with honey. • Have a snack packed with protein --- nuts, wholegrain crackers, Greek yogurt. • Read a page-turner book. • Take a warm shower to get yourself ready for bed. • Gently brush out your hair. • Use lavender-scented lotions or other oils to help relax.

• Ask someone in your home to give you a shoulder massage

6. Lay On Your Side

As mentioned earlier, it’s important to have a good posture and position when sleeping. Many studies have suggested that it is best to sleep on your left side for best circulation and comfort for you and the baby, but doctors now agree that it really doesn't matter which side you lie on. You'll soon realize that the further you are in your pregnancy, the more uncomfortable you might feel when you try to sleep on your back or stomach (which many doctors advise against anyway). In addition, sleeping on your back will only aggravate symptoms like: • Pressure on the blood vessels delivering blood to the uterus • Reducing the oxygen supply that’s traveling to the fetus • Dizziness, and • (You guessed it!) Heartburn Your best bet is to roll over and sleep on your side. This allows you to get better sleep, without jeopardizing the health and well-being of both you and your unborn baby. Pregnancy doesn’t mean that you should sacrifice a good night’s sleep. As your belly grows because the baby inside you grows, it’s more important than ever to be well-rested. By following these 6 tips, you’ll, at the very least, be comfortable and relaxed at night, which will hopefully lead to better sleep.

Kristin Herman is a writer and editor at UK Writings and Academized. She is also a contributing writer for online magazine and blogs, such as Boom Essays. As a marketing writer, she blogs about the latest trends in digital and social media advertising.

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special feature

A UC Davis Health team this month announced the launch of the world’s first, FDA-approved human clinical trial using stem cells before birth to treat the most serious form of spina bifida. The condition is a birth defect that occurs when the spine and spinal cord don't form properly. Without treatment, an exposed spinal cord causes severe neurological damage, resulting in problems that can include lifelong cognitive, mobility, urinary and bowel disabilities.

first stem cell clinical trial for spina bifida treatment announced uc davis health combines fetal surgery and cellular therapy special editorial submitted by friends steward partner uc davis health 46 connexions

The one-of-a-kind treatment will be delivered while the baby is still in the mother’s womb (in utero). It will be the standard surgical procedure combined with the use of a unique stem cell “patch” to repair the defect before birth. The team anticipates seeing improvements for those born with the most severe form of spina bifida known as myelomeningocele (MMC). “Currently, the standard of care for our patients is fetal surgery, which, while promising, still leaves more than half of children with spina bifida unable to walk independently,” said Diana Farmer, professor and chair of surgery at UC Davis Health and principal investigator on the study. “There is an extraordinary need for a treatment that prevents or lessens the severity of this devastating condition. Our team has spent more than a decade working up to this point of being able to test such a promising therapy.” In the United States, four babies a day are born with spina bifida (about 1 in every 2,700 live births each year). The condition leaves a portion of the spinal cord and nerves exposed without any bone or skin covering them. It causes a variety of problems because the spinal cord controls a person’s ability to move their legs and walk. It can also lead to extra fluid in and around the brain (hydrocephalus), causing brain injury.

Farmer, stem cell bioengineer Aijun Wang, and the clinical fetal treatment team led by Shinjiro Hirose, plan to treat six patients. During their procedure, the fetal surgeon will place a biological scaffold of special stem cells (in this case, placental mesenchymal stem cells) directly over the exposed spinal cord. The surgeon will then close the opening in the baby’s back to allow the tissue to regenerate and protect the infant’s spinal cord. The clinical trial, known formally as the “CuRe Trial: Cellular Therapy for In Utero Repair of Myelomeningocele,” is funded by the state’s stem cell agency, CIRM. Working with the UC Davis School of Veterinary Medicine, the team tested the stem cell patch and surgical repair in animals with the MMC defect. They found that it enabled the animals born with spina bifida to walk. It also showed that the stem cell treatment was safe in animals. “We anticipate being able to safely and successfully repair the birth defect that occurs when the protective tissue around a baby’s developing spinal cord fails to fully close before birth,” said Wang, an associate professor of surgery and biomedical engineering, and co-director of UC Davis’ surgical bioengineering laboratory. “Our cellular therapy approach, in combination with surgery, should encourage tissue regeneration and help patients avoid devastating impairments throughout their lives.”

They have been produced and screened in a highly specialized facility within UC Davis’ Institute for Regenerative Cures in Sacramento, California.

We’ve been preparing for this important clinical trial for many years,” said Jan Nolta, director of the UC Davis Stem Cell Program. “We often call these mesenchymal stem cells the ‘paramedics’ of the body because they produce healing factors. They are ideal for repairing damaged tissues in something like spina bifida. Plus, our Good Manufacturing Practice (GMP) facility ensures that the stem cells will be free of infection and properly specialized according to FDA guidelines.

Wang and Farmer said the incidence of spina bifida in California, with a disproportionately high rate among babies of Hispanic or Latino descent, makes their study all the more timely and important. “A successful treatment for MMC would relieve the tremendous emotional and economic cost burden on families,” Farmer added. “We know it costs approximately $532,000 per child with spina bifida. But the costs are likely several million dollars more due to ongoing treatments, not to mention all the pain and suffering, specialized childcare, and lost time for unpaid caregivers such as parents.” Farmer has been working toward this human clinical trial for spina bifida for more than a decade. She launched the Fetal Care and Treatment Center at UC Davis Children’s Hospital with Hirose in preparation for advancing the standard of care. Generous research grants from CIRM also enabled her research team to explore a full range of clinical approaches prior to securing FDA approval for their first human patients. Patients in the clinical trial will be monitored by the research team for 30 months after they are born to fully assess the stem cell surgical procedure’s safety and effectiveness.

Farmer and Wang’s team has generated the stem cells for the study from placental tissue. The cells are known to be among the most promising type in regenerative medicine.

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photo courtesy of jessica gall photography

conjoined at birth: the story of twins' amazing separation

Breanna and Blake were just two ordinary parents excited to be adding to their family. They quickly found out that not only were they expecting, but Breanna was pregnant with twins! However, the surprises didn’t stop there. At nine weeks gestation, an ultrasound revealed that their two babies might be conjoined twins. Breanna and Blake were then referred to Midwest Fetal Care Center in Minneapolis, Minnesota, where they received the most advanced, comprehensive medical care -- all in one location. “Being conjoined is rare, extraordinarily rare. But to be conjoined like this is not something we could even calculate,” described Dr. Joseph Lillegard, MD, PhD, pediatric surgeon at Children’s Minnesota. When asked how she felt during her pregnancy, Breanna said, "being pregnant in a special circumstance, you feel very vulnerable. And everywhere you go, you feel like people are looking at you and wondering how you are holding it together. They [the Midwest Fetal Care Center] just treated us like people [with a confidence of] 'we have this' and 'don't worry about it because we're going to take care of it'." In January 2019, Breanna gave birth to their twin girls --- Emersynn and Ellerie --- at 35+ weeks at The Mother Baby Center in Minneapolis. They went home with the twins knowing they would soon return to Children’s Minnesota for the next step: surgery to separate the twins. Before Surgery At seven months old, Emersynn and Ellerie went to Children's Minnesota for their separation surgery with Dr. Lillegard and a broad team of pediatric specialists. Before surgery, Blake explained a moment he and his wife will never forget. “I remember looking at Dr. Lillegard and she [Breanna] looked at Lillegard and said, ‘You got this’ and he looked at her and said, ‘I got this.’” The twins were wheeled away from their parents very early in the morning, leaving them in the waiting room nervous and scared.

special editorial submitted by friends steward partner midwest fetal care center 48 connexions

“What scared us the most is all the unknowns. Not knowing if you’re going… if you’re going to take both babies home, not knowing if you’re

going to take any home, things like that,” said Breanna. Emersynn and Ellerie’s parents felt every emotion possible during that time in the waiting room. The Separation After over 12 hours of surgery with 25 medical professionals participating, Emersynn and Ellerie emerged separated and healthy. The doctors and medical staff came out to tell Breanna and Blake the good news. “You could just see it on their faces, they were emotionally and physically drained, just like us. It was incredible,” said Blake. Dr. Lillegard was extremely proud of the team that worked on Emersynn and Ellerie. “I cannot tell you how proud I am of the neurosurgical team, anesthesia team and the people in the room, they were just seamless --- they were perfect.” The Reconciliation Emersynn and Ellerie were placed in neighboring rooms with a window wall separating them so mom and dad could be in one room and see the other baby in the room right next to them. Blake and Breanna brought their

clockwise: Breanna during pregnancy; Dr. Lillegard + team members after performing Emersynn and Ellerie's surgery; the girls today at 2 years old

two separated daughters home healthy and happy. “Thank you, Children’s Minnesota, for everything you’ve done for us. You’ve changed our life in more ways than you’ll ever know,” said Blake. Emersynn and Ellerie are happy baby girls who celebrated their second birthdays in the new year. “These two kids are going to have very full, largely uncomplicated lives because of this. The sky is the limit for them,” Dr. Lillegard said beaming with pride.

The Midwest Fetal Care Center, a collaboration between Allina Health and Children’s Minnesota, brings together a multi-disciplinary team of highly trained maternal-fetal medicine experts from Allina Health and pediatric and neonatal specialists from Children’s Minnesota. Open since 2008, the Midwest Fetal Care Center is a national referral center and regional leader in fetal diagnosis, fetal intervention & comprehensive fetal care for unborn babies with complex conditions. Midwest Fetal Care Center offers mothers and babies the highly trained experts and cutting-edge technology they need in one convenient location. From prenatal diagnosis and fetal treatment, to delivery, postnatal care and longterm follow-up, the Midwest Fetal Care Center is with their patients every step of the way. Learn more at midwestfetalcarecenter.org. connexions

special feature

understanding immune pathways by david lee, m.d. ph.d

special editorial submitted by champion steward partner janssen pharmaceutical companies of johnson & johnson 50 connexions

Changing the way we consider and classify disease may have a profound impact on how disease is treated. And it’s a change that’s long overdue. For over 250 years, diseases have been categorized by anatomical classification, or the predominant organ system involved, giving us, for example, nephritis for inflammation of the kidney, vasculitis for inflammation of blood vessels, dermatitis for skin inflammation, colitis for lower GI tract inflammation, and so on. This classification led to the assumption that there were distinct drivers based on anatomical location for each ‘disease’, with the result that new treatments were developed on an organ-by-organ basis.2 Prior to anatomical classification, in medieval times, disease classification was based on four “humors” (black bile, phlegm, yellow bile, and blood). The humors were said to be the four main substances that made up the human body. Any disability or sickness only meant that the humors were not balanced appropriately.1,2 The organ-based system radically changed

how medieval physicians and those who followed considered and treated disease, and laid the foundation for many of our specialty approaches in medical treatments for example, “cardiology” for all things heart related, “dermatology” for study of the skin, “hepatology,” for study of the liver, and so on. I believe we are on the verge of a similar revolution today in how we classify disease, one based on our revised understanding of genetic or molecular drivers of disease in the body. Diseases’ Shared Immune Pathways New discoveries into our immune system function are leading to profound learnings about drivers of disease. Technology has enabled us to better examine both single cell behavior, as well as information from thousands of cells. Further, advances in genetics have resulted in the identification of more disease-associated genes. Insights indicate that common immune pathways are responsible for seemingly disparate diseases – from multiple sclerosis to cancer to lupus. And clinical research with targeted immune therapies has provided compelling evidence supporting this finding. Today we know that one gene can contribute to multiple diseases, as in the case of anti-tumor necrosis factor (TNF) agents that were initially approved for rheumatoid arthritis, and have shown efficacy in numerous other diseases including those considered dermatologic, or gastrointestinal diseases. This pattern is not unique to anti-TNF agents: immune-targeted drugs typically demonstrate efficacy in multiple diseases, not just in one disease. This is powerful insight. It follows

Insights indicate that common immune pathways are responsible for seemingly disparate diseases – from multiple sclerosis to cancer to lupus. And clinical research with targeted immune therapies has provided compelling evidence supporting this finding. that as we understand how diseases share a common pathway and develop treatments targeting that pathway, we can also advance from a “onedrug/one disease” mindset to a more expanded “one-drug, many diseases” approach. By understanding the common pathogeneses that drive across diseases currently viewed as distinct entities, we can more rapidly and effectively expand the development of medicines into broader populations. In short, categorizing disease by molecular or ‘pathway’ drivers of pathogenesis allows us to cut across current siloing of patients by anatomic predominance of symptoms. This approach could help in the development of treatments for fetal diseases, like hemolytic disease of the fetus and newborn (HDFN), a blood disorder in which maternal antibodies attack fetal or newborn red blood cells (RBCs), and can cause significant morbidity and mortality, especially in settings with limited healthcare resources.3,4 New Insights Into HDFN HDFN is an immune disease impacting an estimated 3 to 80 in 100,000 patients per year

in the U.S., which can lead to anemia, hyperbilirubinemia and jaundice, fetal hydrops, brain damage, and death.4,5 Incidence of severe outcomes of HDFN (hydrops, fetal death) has substantially decreased in the past 50 years due to great strides in identifying blood group antigens and in predicting fetal anemia through noninvasive monitoring, however, questions remain about RBC alloimmunization risk factors, preventative therapies, and treatment strategies.4,6 The immune-mediated hemolysis due to blood group incompatibility between the mother and the fetus is the primary cause of HDFN.7,8 The mother’s immune system develops antibodies, known as immunoglobulin G (IgG), that cross the placenta and attack the RBCs in the baby's blood, causing them to break down.3,4 As with other immune-mediated diseases, it is believed that zeroing in on a specific pathway responsible for IgG activity could hold the key to improved treatments for HDFN. IgG plays a predominant role in the pathogenesis of multiple

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autoimmune diseases. Current and future research into the characteristics and functions of pathways regulating IgG are guiding our ability to advance treatments for HDFN and other serious immune conditions that specifically target the mechanisms responsible for damage or tissue disruption caused by these important antibodies.9 Greater Impact Through Immune Pathways Approach Approximately 31 million people throughout the U.S., Europe and Japan are living with moderate to severe forms of immune-mediated disease, yet only five million are receiving advanced therapy today, and a small fraction of those – about two million – have achieved sustained clinical remission.10 In addition, researchers are identifying the role of the immune system in many disease areas not previously considered immune disease. For example, research and medicines in immune-oncology have exploded in recent years, and similar immunology-based research is ongoing in neurology, cardiovascular disease and many other areas. Now is the time to pursue opportunities that cut across traditional disease-area boundaries with the next wave of scientific evolution: an immune pathways approach in treating disease. A pathway-centric scientific approach provides the opportunity to develop smarter, more targeted treatment for many diseases, reaching broader patient populations.

At Janssen, scientists are pursuing a pathways-based approach to discovering and developing innovative medicines, and opening the aperture of opportunity that pathways-based approaches provide into diseases with high unmet need. Our goal is rebalancing the immune system to achieve long-term remission. To learn more about our work in immunology, visit https://www. janssen.com/immunology. References: 1. National Institutes of Health: U.S. National Library of Medicine. History of Medicine: The World of Shakespeare’s Humors (2013). Available at: https:// www.nlm.nih.gov/exhibition/ shakespeare/fourhumors.html. Accessed March 2021. 2. National Institutes of Health: U.S. National Library of Medicine. History of Medicine: Emotions and Disease. The Balance of Passions (2012). Available at: https://www.nlm.nih.gov/exhibition/ emotions/balance.html. Accessed March 2021. 3. National Institutes of Health: U.S. National Library of Medicine. Medical Encyclopedia: Hemolytic disease of the newborn (Reviewed September 29, 2019). Available at: https://medlineplus. gov/ency/article/001298.htm. Accessed March 2021. 4. Hall V, Avulakunta Id. Hemolytic Diseases Of The Newborn. [Updated 2020 Dec 15]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2021 Jan-. Available at: https://www.ncbi.nlm.nih.gov/books/ NBK557423/. Accessed March 2021. 5. Ling, L., Yu, D., Gleeson, C. D., & Moise, K. (2021). 968 Estimation of hemolytic disease of the newborn in the United States from 1996-2010. American Journal of Obstetrics and Gynecology, 224(2),

S600–S601. https://doi.org/10.1016/j. ajog.2020.12.993. Accessed March 2021.

6. Hendrickson JE, Delaney M. Hemolytic Disease of the Fetus and Newborn: Modern Practice and Future Investigations. Transfus Med Rev. 2016 Oct;30(4):159-64. doi: 10.1016/j. tmrv.2016.05.008. Epub 2016 May 26. PMID: 27397673. Available at: https:// pubmed.ncbi.nlm.nih.gov/27397673/. Accessed March 2021. 7. Dean L. Blood Groups and Red Cell Antigens [Internet]. Bethesda (MD): National Center for Biotechnology Information (US); 2005. Chapter 4, Hemolytic disease of the newborn. Available at: https://www.ncbi.nlm. nih.gov/books/NBK2266/. Accessed March 2021. 8. Das S. (2019). Hemolytic Disease of the Fetus and Newborn, Blood Groups (A. Tombak, Ed.). IntechOpen, DOI: 10.5772/intechopen.85316. Available at: https://www.intechopen. com/books/blood-groups/hemolyticdisease-of-the-fetus-and-newborn/. Accessed March 2021. 9. Li X, Kimberly RP. Targeting the Fc receptor in autoimmune disease. Expert Opin Ther Targets. 2014;18(3):335-350. doi:10.1517/147282 22.2014.877891. Accessed March 2021. 10. Includes Atopic dermatitis, rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, psoriasis, Crohn’s disease, ulcerative colitis, systemic lupus erythematosus, lupus nephritis, Sjogren’s syndrome, myositosis, amyloidosis, hidradenitis suppurativa, graft vs host disease, scleroderma, myasthenia gravis, celiac disease. Sources include Decision Resources, Kantar Health, NIH, Journal of Investigative Dermatology, BMJ, Foster Rosenblatt research, ZS Associates, Truven Claims, Deloitte research, data on file.

As a leading pharmaceutical company in the US, Janssen is named after Dr. Paul Janssen, a leading pharmaceutical researcher, pharmacologist and general practitioner. His company, Janssen Pharmaceutical, joined the Johnson & Johnson family of companies in 1961. The company has grown over the years to serve the changing needs of patients and the healthcare industry, yet is still guided by Dr. Janssen’s values of excellence and innovation.

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Living life wholeheartedly At Oliver’s 20-week ultrasound, his parents received unexpected news. Part of Oliver’s heart hadn’t fully developed. They didn’t know if he’d survive the pregnancy. The experts at the Colorado Fetal Care Center saw it differently. And now, Oliver has more heart than his parents ever imagined. Care for unexpected diagnoses, before birth to beyond To learn more, visit childrenscolorado.org/ Fetal-care

Join us in August across our social media platforms for a month-long commemoration of life + loss along the fetal syndrome journey.

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As the response to COVID-19 continues in our communities, pregnancy and infant loss organization Now I Lay Me Down to Sleep (NILMDTS) remains committed to its founding mission --- to serve bereaved families. Following the onset of hospital restrictions and health concerns in the Spring of 2020, NILMDTS expedited the launch of the Medical Affiliate Program and continuing education course, Remembrance Photography, as a Best Practice in Perinatal Loss Populations. While NILMDTS volunteer photographers are the first option when providing families with heirloom photographs, and they have been considered essential personnel for end-oflife care in many communities, COVID-19 was a stark reminder they could not be the only option.

now i lay me down to sleep continues to serve bereaved families admidst pandemic by lorri sisemore

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“As a labor and delivery nurse, the hardest days are the ones where we send families home without the sweet babies they have longed for, nurtured, and loved. The services provided by NILMDTS allow me to assist in supporting those families by honoring the little lives lost. Working with NILMDTS fosters the preservation of memories for these families during a whirlwind of heartbreak,” said Registered Nurse, Ada Murdock. Since launching the program in late March 2020, nearly 2,000 medical personnel have completed the training and are active program participants, serving nearly 500 families that might have otherwise not received our gift. NILMDTS knows that the need for their services will unfortunately never diminish, even during a pandemic. According to the CDC, each year in the United States alone, approximately 24,000 babies are stillborn.

"I want to thank NILMDTS for offering retouching services for our daughter. Due to COVID, we were unable to have a photographer come to us after her stillbirth at 25 weeks. The individual who retouched our pictures was able to soften our daughter’s skin and lighten it so we could see her delicate features. The focus became her, and nothing else distracted your eye from that. She looks like she’s sleeping. The retouched images mean so much to our family. “Veronica, mother Through donations and generous gifts, NILMDTS continues to grow and fund the Medical Affiliate Program, while continuing to recruit and train volunteer photographers and digital retouch artists. Volunteer Opportunities Find fulfillment in gifting bereaved parents with a priceless keepsake after their loss. In addition to photographers and digital retouch artists, NILMDTS has a number of instrumental volunteer roles where you can start making an impact in your community today. You can learn more about the various roles by visiting https://www.

nowilaymedowntosleep.org/ volunteer/. How to Find a Photographer To locate a photographer in your area visit, http:// www.nilmdts.org/findphotographers/. When you access this page, NILMDTS standard terms appear. Once you have reviewed these, click “Continue” at the bottom of the screen. Then enter your zip code and a list of photographers in your area will appear in a list. The ones listed in red are the Area Dispatch Lines and/or Area Coordinators. PLEASE CALL THEM FIRST and allow up to two hours for a response. Guidelines for Services At the request of the parents or medical staff, we will have a NILMDTS Affiliated Photographer, if available, come to the hospital or hospice location for a private and sensitive photography session. Our affiliated photographers are dedicated to making the photography session as loving, sensitive, and private as possible. When searching for a local NILMDTS photographer, visit www.nilmdts.org for contact information of photographers in your specific area. NILMDTS photographers provide the free gift of professional quality portraiture. Gently retouched black and white or sepia toned heirloom quality portraits are delivered digitally as perfect keepsakes. Retouching If you are a parent who is experiencing a loss and a NILMDTS photographer is not available and your medical providers are unable to take photographs of your special

moments, we recommend you take your own photographs and consider submitting them to NILMDTS for digital retouching. We offer a Posing Guide for Hospitals and Posing Poster located on the NILMDTS webpage at www. nowilaymedowntosleep.org/ medical/requesting-services/ retouching/. The guide offers suggestions on posing baby alone, withe the parent(s), and even with the siblings or the entire family. It also includes instructions for submitting images for retouching to NILMDTS so that we can ensure the best quality keepsakes for you and your family of these sensitive and special moments.

Now I Lay Me Down to Sleep was born in 2005 from the loss experience of Cheryl and Mike Haggard. They understood firsthand the irreplaceable importance of having photos as keepsakes during those brief and strained moments that will forever connect parents to their baby's life. The organization exists to give bereaved families the gift of professional heirloom portraits to bring healing and comfort. Get involved by donating to make the services possible, becoming a photographer, or even participating in an upcoming walk. To find a walk near you, visit www. nowilaymedowntosleep. org/remembrancewalk/.

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You have dreams of one day. We offer hope to help you get there.

Connexions Spring 2021

Articles inside

clinical trials: patients at the center

understanding immune pathways

celebrating 25 years of fetal medicine + the lifechanging innovations to come

from diagnosis to delivery and beyond

5 benefits of meditation during pregnancy

pregnancy + delivery: 5 unexpected complications

conjoined at birth: the story of twins' amazing separation

first stem cell clinical trial for spina bifida treatment announced

EXIT Procedure Saves Baby with Rare Tumor Diagnosis

fetoscopic spina bifida repair during covid-19 pandemic

covid-19 + pregnancy: emerging information to know

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