Connexions Spring 2024

conneXions

linking the medical & personal worlds of fetal syndromatic issues

peace of mind for difficult diagnosis, eight time zones away tests to expect during pregnancy infertility + how to best support

Learning your unborn baby has a birth defect is overwhelming. No family is ever ready for this experience. Neither are most physicians, who often only see one or two cases like the one pictured above in their careers.

Our experts are ready. We are the most experienced team in the world in fetal diagnosis and treatment. Since our center opened 28 years ago, we have cared for more than 32,000 families. We have performed the most fetal surgeries and have delivered more babies with birth defects than any center in the world.

We have seen it all. We are prepared for everything. We are here to help.

fetal health foundation offers peace of mind

cravings, mood swings + nausea, oh my! why it's your hormones

special feature: complex procedure and unique expertise saves baby with rare fetal tumor

special feature: 10 things to do before getting pregnant

special feature: meet the doc: 7 questions with dr. timothy crombleholme of the fetal care center at connecticut children's

special feature: california stem cell agency, shriner's children's award $15 million to uc davis cure trial

tests to expect during pregnancy

special feature: remembering lori

infertility issues: how to be the best support

special feature: the best start for the best outcomes

chiropractic care for pregnancy + beyond

special feature: logan's recovery from gastroschisis: seamless care from pregnancy to toddlerhood

cord blood banking: is it a good fit for your family?

myths about postpartum depression: what we all should know

ucsf leads the way in hydrops research with help from the brianna marie and fetal health foundations special

letter from the editor...

This is our 18th year as a non-profit organization and our 9th issue of Connexions magazine --- can you believe that?!? We have seen so many changes over the years and have helped families from all across the globe with answers and connections to medical care providers for second opinions and treatment. And we have certainly been flexible to meet the changing needs and demands of our community. In the many years we at the Fetal Health Foundation have existed to serve this niche community, one thing is for certain: the fetal and maternal health industry continues to grow and improve on research and development, diagnostics, and treatment for families affected. This should be reassuring to anyone trying to conceive or recently learning of their pregnancy, as if and when you face concerns, you can have confidence that there are organizations like the Fetal Health Foundation and each of its supporting partners, who exist to help and provide hope for you and your baby(ies). You are never alone on your pregnancy or fetal syndrome journey.

In each of our Connexions issues, our mission is to not only share some of these exciting developments within fetal and maternal health, but to also showcase what our Steward Partners are doing well and possibly even differently than others in the field. We also aim to provide general pregnancy and parenting information, educating around important topics such as infertility, postpartum depression, and other more holistic approaches to help you along your journey and so you may serve as the best advocate for you and your baby.

While this publication is only distributed once each year, you can find past issues, as well as ongoing, evergreen content on our blog, and of course, we are readily available by phone call and email.

Most of us know what it is like to have concerns about your pregnancy, to have questions and not know where or to whom to turn for expert advice. Let us be your guide on this exciting journey!

Contributing writers:

dr. kathryn heidt

erika k. wolf

talitha a, mcguinness dr. allison scothorn, dc

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), nonprofit organization based out of Colorado.

You can follow the Foundation through monthly newsletters, on our blog, and across social media.

fetal health foundation offers peace of mind to mother eight time zones away during difficult diagnosis

Dear Lonnie, I wanted to thank you for being with me... those were very difficult moments. My heart is as big as a house. I wish you much success & health in the new year. I am sending a picture of my perfect son.

GreetingsfromCroatia

II am Iva, a 39-year-old mother of two. I had really wanted a second child, but I was always waiting for something (a better job, finishing my doctoral studies, etc). When I finally got pregnant the second time (in 2022), everyone was very happy. Apart from the borderline gestational diabetes, everything was fine until 28 weeks.

Because my little girl (11) is healthy, I never thought that anything could go wrong. When you see someone's child with a diagnosis, you think "I'm sorry,” but for a serious diagnosis to happen to you, it seems far away.

During the ultrasound exam, the doctor said that the ventricles in our baby’s brain were slightly larger, but not worrisome. At the next exam, they grew. During the next, they were even bigger. And then it was suspected that our baby had hydrocephalus. I did an MRI and the doctor said, “Your child has complete agenesis of the corpus callosum.”

I knew that agenesis meant that something was missing, but I had no concept of what it all could mean.

That's when I turned to the Fetal Health Foundation. Although I am on the other side of the world (we live in Europe, in Croatia), the support I received then was something I will remember for the rest of my life.

I have often encountered problems in my life, but there was always a way out. This was the only time I didn't know what to do next. I just prayed, and that's where I found peace. Our child is missing part of his brain, and no one could have predicted that would happen. The support meant a lot, but the uncertainty was killing me.

Finally, the birth went perfectly.

Our baby got the highest scores after birth (APGAR 10/10), and we left the hospital after just four days. After just one month, we started early intervention in swimming, physical therapy, listening to classical music, and more.

Thirteen months have passed. If the doctors hadn't told me, I would never have known my son had a diagnosis. He is meeting all of his developmental milestones, sometimes even early. He crawls, stands, talks, laughs. Everyone adores him. I don't know what awaits us in the future, but I know one thing -- there is always a way out. You just have to believe.

The Fetal Health Foundation serves families from around the globe in a number of capacities, not limited to support through email and phone calls. Founders Lonnie and Michelle Somers work with families to help them receive second opinions, receive treatment for diagnoses, and generally, on how to be an advocate for their babies when faced with a fetal syndrome diagnosis.

Little Mateo playing with lights at the holidays.

cravings, mood swings + nausea, oh my! why it's your hormones

AAs a pregnant mama, you may be experiencing (or have experienced) these unpleasant symptoms and more. Let’s explore a bit about why pregnancy brings with it some less than ideal experiences, and a few things that may help prevent and/or relieve these symptoms.

As a functional health provider and someone who works with women’s health, fertility, and hormones, I am always intrigued by how little women know about their amazingly capable bodies. Furthermore, I am disheartened by the messages that society has ingrained in a woman's mind from a young age that pregnancy is a “condition” that requires pain, agony, discomfort, and medically guided and gloved procedures.

Let’s talk about the general hormonal changes your body undergoes as it designs and creates this little human within you. From conception, your brain kicks into gear, mobilizing extra hormones from your thyroid, and as the placenta begins to develop, it makes its own progesterone, estrogen, and “human chorionic gonadotropin hormone” (i.e. hCG).

As the placenta grows, more and more of these three hormones are released. It's a system shock! While these hormones are great, their sharp rise can cause symptoms similar to hormonal excess. For example, lots of progesterone can alter mood and even contribute to some constipation. Rising estrogen brings with it more altered mood, as well as increased blood flow, which may cause increased urination, swelling discomfort throughout the body (i.e. in the joints), sinus congestion, and tender breasts. As many of you know, hCG in particular, rises rapidly in the first few weeks and then into the first several months of your pregnancy. This is often blamed for some of the nausea known as “morning sickness.”

by dr. kathryn heidt

Trimesters two and three see a continued rise in estrogen and progesterone, while hCG peaks just

before month three, and then steadily declines the remainder of the pregnancy. hCG is therefore often implicated in morning sickness, which commonly selfresolves entering the second trimester. However, I would like to point out that estrogen is also playing a likely role here and many women will experience nausea throughout the pregnancy.

If you just read all of that and didn’t think, one, “wow, my body is amazing!” but two, “wow that is a LOT,” then go back and read it again. Don’t oversimplify the fact that these hormones are being created at high amounts from an entire organ that your body creates from the materials at hand! Yes, your body is creating a placenta, and therefore a baby, from the materials it has to work with. So let’s talk about preparation.

As I coach my patients, three to six months is optimal to prepare both your and your partner's bodies for conception. This allows you to build up your nutrient reserves, which go far beyond a severely limited prenatal vitamin that’s well-marketed on social media platforms, and allows him to decrease the inflammation and oxidative stress in his body. The male preparation process is based on the three-month life cycles of sperm. His testes create and store sperm, which is released as one component of many in the ejaculate. These sperm are highly, I repeat, highly susceptible to DNA alterations from an unhealthy, inflamed body in which they are created. Not only that, they

are susceptible to many other injuries from too much heat, to too much wi-fi exposure (no more cell phones in the pocket), and so much more. Why go into all of this sperm detail? Well, it is an often unconsidered, but major (up to 30%+) factor in your pregnancy symptoms. Read that again. Sperm quality directly and significantly impacts the symptoms you will experience during pregnancy. Poor quality sperm leads to increased unpleasant symptoms, specifically nausea, and even increases the risk of miscarrying.

There are many categories on which I educate my pre-early conception patients, and then I individualize which categories they specifically need support and fine-tune the details from there. Here are several categories in which you would optimally prepare and continue supporting your body through gestation and into postpartum (pending individual changes as needed):

Multi Nutritional support: This includes your vitamins, minerals, and generally what is included in a prenatal supplement. However, please be mindful that some of the most popular prenatals available are severely lacking and/ or use synthetic vitamins to be avoided, such as folic acid.

Anti-Inflammatory, structural lipid support: This is generally what folks think of as omega 3s, however, when properly supported with phospholipids and brain support, this is extremely important for maintaining your body tissue integrity, as building

the placenta and baby requires siphoning from your own body. In fact, your brain shrinks during pregnancy and these changes are seen as far as two years out postpartum. Talk about mommy brain! This support is crucial if you are “team mom’s recovery”, and support begins now.

Additional blood sugar support: As your hormones rise, this impacts your body’s ability to regulate blood sugars as properly as it once did. Hence optional tests like the glucose challenge test.

Additional mineral and vitamin support as individually needed: Do you need additional iron or vitamin D, for example? These are two nutrients of which you don’t want too much or too little and I suggest monitoring two to three times during pregnancy to get correct dosages. I often consider additional magnesium and activated B6, as well, especially when morning sickness occurs.

Additional antioxidant support: As your body undergoes rapid changes and what science calls, “cellular turnover”, there is an increased need for curbing oxidative stress.

To be clear, while many of the negative symptoms experienced during pregnancy are directly related to hormonal changes, the symptoms are usually a result of the impact of these hormones as they play out their role in a less than optimal environment. In other words, the more prepared and stocked up your body is going into pregnancy, the less likely the negative symptoms will occur in most cases.

Dr. Kathryn is a functional medicine doctor who works primarily in women's health. She is passionate about informing and empowering women to understand, know, and trust their bodies. She utilizes functional testing, in-depth analysis, and highly individualized care plans to help her patients heal and find relief from their symptoms and illnesses.

Complex Procedure and Unique Expertise Saves

Baby with Rare Fetal Tumor

Rural Colorado couple Lyndsy and her husband, Aaron, found out they were expecting their third child, Ella, in November of 2019. Right when COVID-19 shut down the country in March of 2020, doctors discovered a large mass on Ella’s tailbone during Lyndsy’s 20-week ultrasound. Within days and with the tumor already rapidly growing, Lyndsy and Aaron had a telehealth visit with a maternal fetal medicine specialist at the Colorado Fetal Care Center who confirmed Ella had a sacrococcygeal teratoma, or SCT — an extremely rare fetal tumor that occurs in only 1 in every 40,000 live births. The Colorado Fetal Care Center was the only facility in the region to offer the procedure that ultimately saved Ella’s life.

Staying close to care

When Lyndsy was 22 weeks, they traveled from their hometown in Montrose, Colorado to Children’s Hospital Colorado for the day for a comprehensive appointment at the Colorado Fetal Care Center. This included a fetal MRI, fetal ultrasound, fetal diagnostic testing and a fetal echocardiogram. Doctors on the team, including maternal-fetal medicine specialist Michael Zaretsky, MD, helped the family understand their treatment options, such as fetal surgery, and the potential risk and outcomes involved.

“It was a lot of information to take in, and it was hard to hear,” Lyndsy says. “I had tons of questions over the next few weeks. But every time I’d call Dr. Zaretsky or any of the fetal care team, 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.”

At 24 weeks, Ella’s mass was nearly as big as she was. Additionally, the tumor required a significant amount of blood and placed additional strain on her rapidly beating heart. Lyndsy and her care team decided it was time to move to Denver so that if there were any problems or she went into labor, she’d be closer to the hospital. Monitoring Ella effectively would require Lyndsy to visit the hospital two to three times a week.

Offering a rare 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. This is a highly specialized surgical procedure used to deliver babies who will be unable to breathe or transition safely from fetal life when separated from their mother.

The Colorado Fetal Care Center is the only facility in the Rocky Mountain region to offer EXIT procedures. 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.

In Ella’s case, the EXIT procedure would allow doctors to partially remove her from the uterus while keeping her connected to the placenta. This would allow doctors to remove Ella’s tumor before she took her first breath, giving her the best chance for survival.

Providing hope for the future

At the end of April 2020, one of their fetal and pediatric surgeons performed the EXIT procedure with an extensive multidisciplinary team of more than 20 fetal specialists to ensure that Ella and Lyndsy received the best care possible. Ultimately, the SCT was about double Ella’s size — one of the largest the team had ever seen. Once it was successfully removed, they fully delivered Ella. 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. It was nothing short of incredible, the care team says. And eventually, Ella 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.

“The whole team was really good about updating us,” Lyndsy recalls. “They even 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.”

After her long fight in the NICU, Ella continued to thrive. Now four years later, she loves to play with her older siblings and explore the outdoors. She recently took on the new role of big sister and chief mess-making officer — her parents joke no shelf or drawer is empty enough for Ella. Looking back, Lyndsy says she’s incredibly grateful for everyone at the Colorado Fetal Care Center, who she now considers family, and the comprehensive care they provided.

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

At Katie’s 20-week ultrasound the doctors saw something unexpected. Myelomeningocele. They told Katie and her husband Kyle that their son Liam may have a poor quality of life as a result of the condition. That’s when the family came to the Colorado Fetal Care Center. Here, the team saw something different: a little boy and a family they could help. And now, Liam is stronger than his parents ever imagined.

At the Colorado Fetal Care Center, we care for kids like Liam across the entirety of their journey, and families have access to a full spectrum of treatment: maternal, perinatal, neonatal and pediatric subspecialty care for any condition.

Care from Before Birth to Delivery and Beyond

Perinatal Medicine

Comprehensive perinatal testing and counseling for families managing high-risk pregnancies

Maternal fetal medicine

Fetal cardiology

Fetal treatment and surgery

Labor and delivery

Neonatal Care

Advanced care with the capability to treat virtually any condition affecting newborns

Cardiac ICU and Heart Institute

Level IV Neonatal ICU

Dedicated neonatal nurse practitioners, trained at master’s or doctorate level, provide complex and specialized care for critically ill preterm babies and assist with highrisk deliveries.

Beyond Delivery

A focus on long-term quality of life through integration with top-ranked subspecialty care

Breathing Institute

Neuroscience Institute

Neonatal surgery expertise

Digestive Health Institute

Care for unexpected diagnoses, before birth and beyond To learn more, visit childrenscolorado.org/Fetal-care

Engaging minds and creating the future for prenatal treatments of fetal syndromes.

Engaging minds and creating the future for prenatal treatments of fetal syndromes.

Join us for the journey.

10 things to do before getting pregnant

special editorial submitted by friends steward partner, Cincinnati Children's Hospital

PPreparing your body for pregnancy involves taking steps to optimize your health and well-being before conceiving.

Dr. Braxton Forde, MaternalFetal Medicine Specialist at Cincinnati Children’s Fetal Center, offers these 10 keys to prepare your body for pregnancy. He advocates consulting with your healthcare provider before making any significant changes to your lifestyle or starting any new supplements.

“Receiving personalized guidance based on your individual health needs and medical history is indispensable,” he says.

1. Start Taking Prenatal Vitamins. Prenatal vitamins that contain folic acid, iron, calcium, and other essential nutrients help support the early stages of fetal development. Don’t worry about getting bogged down with all the different choices, as long as the prenatal vitamin has the critical nutrients you need, you should be in good shape. In general, we recommend taking a prenatal vitamin at least three months prior to trying to conceive to both build up your iron stores, as well as build up your folate stores, to protect your baby from the risk of spine problems. Some women may be recommended to take a higher dose of certain things, like folate, so be sure to ask your doctor if you are one

of the people who might need something extra. Omega-3 fatty acids, like DHA, and choline are also important to a baby’s brain and spinal cord development, and may even help you stay pregnant longer. While a healthy balanced diet rich in vegetables, fruit, protein, and the “good” fats will often have enough of choline and DHA, if you are concerned at all, you can also take those in addition to your prenatal vitamin, too.

2. Maintain a Balanced Diet. Include a variety of fruits, vegetables, whole grains, lean proteins, and dairy products daily. Stay well-hydrated and limit the intake of processed foods, sugary snacks, and high-fat meals.

3. Exercise Regularly. Activities such as brisk walking, swimming, Pilates, yoga, and low-impact aerobics can help build strength, endurance, and flexibility. In general, we encourage good activity during pregnancy and most exercise is totally safe and encouraged. A few things to avoid would be heavy weightlifting, hot yoga, and contact-based exercise (boxing, MMA, etc).

4. Manage Your Weight. Achieve and maintain a healthy weight before becoming pregnant. Being underweight or overweight can affect fertility and increase the risk of complications during pregnancy.

5. Avoid Harmful Substances. Smoking, drinking alcohol, and using recreational drugs can have harmful effects on fertility and fetal development. This includes THC use and vaping, both of which are discouraged during pregnancy.

6. Schedule a Preconception Checkup with Your Provider. Discuss your overall health, review

any medications you are taking, and address any preexisting health conditions that may impact your pregnancy or chance at becoming pregnant. This is also a good time to talk over vaccinations with your doctor, to make sure you are up to date with anything you might need before getting pregnant. This is because pregnant people are at increased risk of infections due to the pregnancy, and while most vaccines are safe during pregnancy, some of them (like MMR) you should not get while pregnant.

7. Reduce Stress. Find what works best for you and your lifestyle, but choose something you can stick with. Meditation, deep breathing exercises, and yoga are all great examples of activities that help manage stress and promote emotional well-being.

8. Track Your Menstrual Cycle. If you have never tracked your cycle or do not know the ins and outs of each phase that your body experiences each month, it is time to learn. Identify your most fertile days and optimize the timing of intercourse to increase your chances of conception.

9. Address Any Chronic Health Conditions. Work with your healthcare provider to manage chronic health conditions such as diabetes, hypertension, or thyroid disorders before becoming pregnant to prevent more serious complications.

10. Stay Informed. Read reputable sources and consider taking childbirth education classes to learn more about the whole process of pregnancy, labor and delivery, and postpartum care. This will help you be a great advocate for yourself and your baby. When in doubt, ask your doctor or midwife, not the internet.

meet the doc: 7 questions with dr. timothy crombleholme of the fetal care center at connecticut children’s

TTimothy Crombleholme, MD, is a world-renowned expert in fetal surgery. Dr. Crombleholme and his experienced team diagnose and treat the full spectrum of complex fetal conditions, some of which require surgery during pregnancy.

1. Dr. Crombleholme, you are a seasoned expert in the world of fetal care. Please tell us a bit about yourself!

I’m a pediatric and fetal surgeon and I have devoted my career to fixing serious conditions that start in the womb. When I was in medical school, I read a case report in the New England Journal of Medicine reporting the very first open fetal surgery performed by Michael Harrison, MD, the, “Father of Fetal Surgery,” in April of 1981. I was fortunate to train at the University of California San Francisco (UCSF) with Dr. Harrison during the dawn a new era when fetal surgery was first emerging—and became fascinated with the idea that the uterus did not have to be a barrier to solving problems in a developing baby.

Too often, a baby with a problem develops irreversible consequences by the time of delivery that could have been addressed in utero. The goal of fetal surgery is to intervene

at a time that will allow more normal development to occur and prevent these consequences.

2. What drew you to Connecticut Children’s? Why open a fetal care center in Hartford, CT?

First, Connecticut Children’s offers excellent subspecialty care not only in fetal surgery, but in maternal fetal medicine support, neonatology, pediatric radiology, genetics, and multiple pediatric surgical subspecialties. These are all required to provide comprehensive prenatal evaluation and postnatal care for expectant moms with high-risk pregnancies.

We work in an integrated fashion to provide supportive care for both mom and baby while addressing among the most challenging of fetal problems. All of these components are built into the Fetal Care Center at Connecticut Children’s.

Second is our institutional commitment to expanding and innovating. This can be seen in the building of a new patient tower at Connecticut Children’s, the third floor of which will be dedicated to the Fetal Care Center once construction is complete in 2025.

Finally, we are grateful to have all the required components to build a full-fledged, comprehensive fetal care center; we recognize that not every tertiary or quaternary children’s hospital has this opportunity.

3. Why is it sometimes better to operate on a baby before it is born?

Babies are the most vulnerable of patients and the reality is many of the unborn babies I treat are diagnosed with life-threatening conditions—while still developing in the womb. By the time they are born, care and treatment become extremely difficult, if at all possible. Often, there can be ongoing organ injury or developmental abnormalities which are no longer fixable.

We want families to have the best possible outcomes and their babies to lead healthy, fulfilling lives. When you operate on a baby in the womb, you’re changing the course of the condition. We no longer see the uterus as a barrier to treating the unborn patient, but rather the world’s best incubator that allows the baby to heal and develop more normally once they have been treated.

4. How do you work with families

“When you operate on a baby in the womb, you’re changing the course of the condition. We no longer see the uterus as a barrier…”

who are facing the uncertainty that comes with a high-risk pregnancy?

Everyone involved in the Fetal Care Center appreciates how stressful being diagnosed with a fetal anomaly can be. We aim to help families understand the condition, what effect it can have on the baby’s development and treatment options either before or after birth. Often, this approach provides the family comfort and a sense of control in an otherwise frightening situation.

Before any surgery or intervention, we sit down with the parents and explain what their baby is facing, the risks, and the options for the paths forward for the most positive outcome possible—from pregnancy through delivery, and beyond.

Families need and deserve the care and support a place like Connecticut Children’s offers, and we’re pleased to meet those needs the best we can.

5. What makes the Fetal Care Center at Connecticut Children’s different than other fetal care centers across the nation?

Something unique offered at the Fetal Care Center at Connecticut

Children’s is a comprehensive, customized, integrated one-day evaluation with a full panel of experts—all at one location. My colleagues and I want to make the experience as easy as possible to help families fully understand their baby’s condition and having all of their questions addressed.

Additionally, moms who need fetal surgery can expect the expertise of a team who only focuses on fetal and neonatal surgery. We call this vertically integrated care: from the time of prenatal diagnosis, throughout pregnancy, at the delivery, through the NICU course and long-term follow up, the same team continues to care for you and your baby. I truly believe this team approach leads to better outcomes.

6. What do you envision for the future of fetal care?

I believe that we will see continued expansion of the indications for fetal intervention with new approaches to curing genetic conditions before birth with fetal cellular therapy and fetal gene therapy. We are currently working on placental gene therapy to treat severe fetal growth restriction, or intrauterine growth restriction (IUGR), a leading cause of perinatal morbidity and mortality.

7. What’s the most rewarding part of your job?

I often hear from parents and their kids who are now going off to college—and whom I operated on 20 years ago. It’s rewarding to see these lives blossom when life might not have been possible. The greatest satisfaction of my career is the privilege of having touched the lives of these families.

Dr. Timothy Crombleholme reuniting with baby Thaddeus, and his parents, Ester and Samuel, after undergoing successful open fetal surgery for the treatment of myelomeningocele, the most serious type of spina bifida.

the center

The Fetal Care Center at Connecticut Children’s is on a mission to potentially intervene and alter the course of a baby’s condition by shifting the focus from when the baby is born, to as early as 15 or 16 weeks in development. It is one of only a few, true comprehensive centers in the Northeast, offering a full spectrum of care for unborn babies diagnosed with fetal abnormalities such as twin-twin transfusion syndrome (TTTS), myelomeningocele (MMC), and congenital diaphragmatic hernia (CDH). Among our groundbreaking procedures is the FETO technique, designed to advance lung growth to treat the most severe cases of CDH. It is at the forefront of cutting-edge technology and open and minimally invasive fetal interventions for the most complex fetal conditions.

To refer a patient, please call 1-833-733-7669. To request an appointment without a referral, please call 1-860-545-9830.

The #1 authority in changing the course of complex fetal conditions.

Our Fetal Care Center, led by Timothy Crombleholme, MD, is the only comprehensive center in the northeast. We offer leading-edge open and minimally invasive fetal surgery with procedures such as FETO to accelerate lung growth. Such innovative care allows us to alter—or even reverse—conditions such as congenital diaphragmatic hernia, myelomeningocele, twin-twin transfusion syndrome, and more. A feat once beyond imagination.

ConnecticutChildrens.org/FCC

• Personalized treatment plans for each family

• Care from the nation’s leading medical and surgical experts

• Access to the most advanced treatments available

• Breakthrough research advances and innovation

To learn more or make a referral, visit NationwideChildrens.org/Fetal

California stem cell agency, Shriners Children’s award $15 million to UC Davis CuRe trial funding will support clinical trial testing stem cell treatment for spina bifida

special editorial submitted by friends steward partner, UC Davis

AA team of UC Davis Health researchers, led by pioneering fetal surgeon Diana Farmer and bioengineer Aijun Wang, has been awarded nearly $15 million for groundbreaking work on a spina bifida treatment. The funding will allow the team to carry out phase 2 of a clinical trial that tests the first stem cell treatment for the birth defect. Spina bifida, also known as myelomeningocele, occurs when spinal tissue in a fetus fails to fuse properly during the early stages of pregnancy.

Launched in the spring of 2021, the CuRe clinical Trial (Cellular Therapy for In Utero Repair of Myelomeningocele) tests a one-of-a-kind treatment that uses placenta-derived stem cells to improve outcomes for children with spina bifida. The treatment, a stem cell patch, is delivered directly to the spinal opening of the fetus while still developing in the mother’s womb.

In its board meeting in November, the California Institute for Regenerative Medicine (CIRM) approved an $8.9 million grant to fund the CuRe trial. Shriners Children’s matched this funding with a $5.9 million grant. The funding application reviewers voted unanimously that the CuRe study has exceptional merit and warrants funding.

Scientists at UC Davis have developed an investigational stem cell patch for spina bifida. This investigational patch may help children with spina bifida have better outcomes.

Investigational placental mesenchymal stem cells (PMSCs) are added to the standard patch placed on the spinal cord during fetal surgery (before birth) to repair the spina bifida defect.

“We want to thank CIRM for their support of this program and our partner Shriners Children’s for making this important work possible. Their funding will help us achieve our goal of using stem cells before birth to improve the ability to walk and have bowel and bladder control in patients born with spina bifida,” said Farmer, distinguished professor of surgery and principal investigator for the CuRe trial.

about spina bifida and the CuRe clinical trial

Spina bifida affects 1,500 to 2,000 children in the U.S. every year. Myelomeningocele is the most severe form of spina bifida. It results from incomplete closure of the spinal cord during gestation, which leaves a portion of the fetal spinal cord unprotected. The neuronal tissue damage to the spinal cord may lead to lifelong lower body paralysis and bowel and bladder dysfunction.

Above: Step-by-step process of stem cell placement during surgery; a spina bifida patient after surgery.

The Management of Myelomeningocele Study (MOMS) demonstrated that surgical fetal closure of the spinal cord defect in utero protected the previously exposed spinal cord and improved motor outcomes compared to repairing the defect after birth. The study established in-utero repair as the new standard of care of myelomeningocele.

The CuRe trial was developed to test whether placenta-derived mesenchymal stem cells can protect, repair and restore damaged spinal tissue beyond what surgery can accomplish alone.

In 2015, the project was funded through a CIRM Preclinical

Babies who have this surgery will be closely monitored to evaluate the effects of the stem cells.

Developmental Award grant

Later, CIRM funded the research team with a $5.6 million Late Stage preclinical TRAN1 grant The study was then approved by the U.S. Food and Drug Administration (FDA) in 2020 as a Phase 1/2a trial. In 2021, CIRM further funded the first phase of the trial with a $9 million grant

During its first phase, the trial tested the safety of the treatment in seven babies with spina bifida. The FDA and data monitoring board determined that the stem cell therapy is safe enough to proceed to the next phase of the trial.

“The CIRM awards have made it possible for our research team to generate clinical grade stem cells at the UC Davis Good Manufacturing Product (GMP) facility, carry out studies for the FDA investigational new drug approval, and complete Phase 1 of the trial,” Wang explained. Wang, who is an expert in stem cell biology and bioengineering, is the co-inventor of the placentalderived stem cell treatment and the study’s co-principal investigator with Farmer.

Farmer and Wang also serve as principal investigators with the Institute for Pediatric Regenerative Medicine (IPRM) IPRM is a collaborative initiative of the UC Davis School of Medicine and the Shriners Children's Northern California. They are also joined by a large team of innovators and researchers from the Wang Lab at the Center for Surgical Bioengineering

Over the years, Shriners Children's has also funded several spina bifida-related studies led by Farmer and Wang. These projects include developing innovative tissue-engineered bony scaffold

Above: Pioneering fetal surgeon Diana Farmer, M.D., and bioengineer Aijun Wang celebrate Phase 2 with a toast.

for fetal treatment of spinal bifida and new spina bifida disease models, such as the guinea pig and English bulldog.

The new combined award supplies critical funding to support phase 2a of the clinical trial. It will allow the researchers to evaluate the preliminary success of stem cell therapy in additional 28 patients, as approved by the FDA.

“We are very grateful and proud that we now have both CIRM and Shriners Children’s as our partners for the phase 2 portion of the CuRe trial! It is this important partnership that is making this groundbreaking work possible,” Wang said. “It is a testimony to the team science approach that our team has always been taking to conduct innovative research and solve unmet medical needs.”

The UC Davis Fetal Care and Treatment Center is a comprehensive fetal care center, and the second center in California, after UC San Francisco, to offer open fetal surgery.

916-794-BABY (2229) fctc@ucdavis.edu

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 world-class fetal care, so you and your little one can live a healthier life.

The UC Davis Fetal Care and Treatment Center offers the latest advancements in fetal surgery, the best expertise for high-risk pregnancies, twins and multiples, a full range of genetic testing, plus a renowned spina bifida research program.

With dedicated specialists committed to your family’s health, you’ll always have an extraordinary team behind you.

Proud to offer:

■ A level IV Neonatal Intensive Care Unit (the highest level of care)

■ 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 pediatric surgeons available 24 hours a day

tests to expect during pregnancy

DDuring pregnancy, most patients will have several tests that help direct the care provided to both mother and baby(ies). Dr. Teresa Harper, Maternal-Fetal Medicine Specialist at Children’s Hospital Colorado, discusses six common tests during pregnancy and why they are conducted.

She emphasizes that the purpose of these tests is to monitor the mother’s health, detect any potential issues, and ensure the well-being of both mother and baby(ies).

“Discussing these tests with your healthcare provider and following their recommendations for prenatal care is extremely important for the best outcome,” she said.

1. Complete Blood Count (CBC) counts the number of different

types of cells in the mother’s blood and helps determine whether there is a problem with clotting or anemia.

2. Blood Type and Rh Factor test establishes the mother’s blood type and Rh Factor. Rh incompatibility between mother and fetus can cause serious complications if left untreated.

3. Urinalysis and Urine Culture check for signs of infection or protein in the mother’s urine to detect urinary tract infections and preeclampsia (high blood pressure).

4. Specific Diseases or Infections such as rubella, hepatitis B and C, HIV, sexually transmitted infections, and tuberculosis if detected and treated can reduce pregnancy complications.

5. Glucose tolerance test is performed to measure the mother’s response to sugar to screen for pregnancy-related (gestational) diabetes. For most women diagnosed, the blood sugar usually returns to its typical level soon after the baby is born.

6. First and second trimester prenatal screening tests are a combination of ultrasound and maternal blood testing to assess the risk for common genetic conditions and some birth defects.

As with most things, knowledge is key. Allowing your healthcare provider to get a full picture of you and your baby’s(ies’) health will enable them to carefully manage your plan of care to help prevent complications or minimize risks along the way.

special editorial submitted by friends steward partner, Children's Hospital Colorado

photo

remembering lori

She was a fierce advocate, force for fetal advances, and beloved friend.

LLori J. Howell, DNP, MS, RN, beloved colleague, clinical innovator and former Executive Director for the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT) at Children’s Hospital of Philadelphia (CHOP), passed away Friday, January 19, 2024, after a courageous battle with ovarian cancer. She was surrounded by her loving family. For more than 40 years, Lori was committed to ensuring the highest standard of care for families facing birth defects. She was a force in advancing the field of fetal treatment from its inception, first at the University of California, San Francisco (UCSF), where she served as the very first fetal surgery nurse coordinator for that institution’s nascent fetal program, and then at CHOP, where she co-founded the hospital’s fetal diagnosis and treatment program with fellow fetal medicine pioneer, N. Scott Adzick, MD, in 1995.

During her 27 years at CHOP, Lori helped catapult the CFDT into the largest and most comprehensive fetal therapy program in the world. She helped recruit and build the center’s stellar multidisciplinary team, established innovative and personalized patient care approaches, developed important patient education, and championed both

innovative research approaches and the importance of long-term follow-up, all of which are now the gold standard in fetal medicine and have been modeled by colleagues around the world.

In 2008, Lori’s vision became a reality with the opening of CHOP’s Garbose Family Special Delivery Unit (SDU), the world’s first birth facility in a pediatric hospital specifically designed for healthy mothers carrying babies with known birth defects. The SDU allows moms to stay close while their babies are treated immediately. Having this comprehensive care in one location is critically important to the well-being of babies born with complex congenital conditions. Lori was essential in making the SDU what it is today.

In addition to her clinical expertise, Lori was a co-investigator on many research studies including the National Institutes of Health’s “Management of Myelomeningocele Study” (MOMS). This landmark study demonstrated that performing fetal surgery for spina bifida results in significantly improved outcomes versus conventional postnatal repair.

In 1997, Lori established CHOP’s annual Fetal Family Reunion, a wonderful celebration each June. This past year, the 27th annual reunion brought together more than 3,000 people from among the more than 30,000 expectant families cared for in the CFDT, from all 50 states and more than 70 countries. This was one of Lori’s favorite days of the year. In a tribute to Lori, this day of celebration will be named the Lori J. Howell Fetal Family Reunion.

In addition to her work in fetal diagnosis and treatment, Lori was a leader and mentor to many.

Left: Lori with CHOP’s first fetal surgery patient, Roberto Rodriguez Jr., who underwent fetal surgery in 1995 for a large mass growing on his left lung; Above: Lori with congenital diaphragmatic hernia patient Hugh and his mother Molly; Right: Lori with CHOP’s original Center for Fetal Diagnosis and Treatment team after opening in 1995.

While at UCSF, as the Clinical Nurse Specialist for Pediatric Surgery, she developed the pediatric pain management, tracheostomy and clean intermittent catheterization programs and worked to champion education for patient families. At CHOP, she created and led the Surgical Advanced Practice Nurses team and was instrumental in the creation of the Neonatal Surgical Team. Lori was a recipient of the Founders Award for Excellence in Pediatric Surgical Nursing and the author of several articles on the establishment of fetal centers. She was also the inaugural holder of the Lynne L. Garbose Endowed Chair in Fetal Family Care at CHOP.

Lori received her degree in Nursing at the Intercollegiate Center for Nursing Education at Washington State University,

and she received her Master of Science in Parent/Child Nursing at UCSF. She went on to earn her Doctor of Nursing Practice degree at the Villanova University College of Nursing.

She was relentless in her mission to provide patients with an accurate diagnosis, the best possible outcome and, most importantly, an unsurpassed experience from a multidisciplinary team. Her impact is felt at CHOP daily, through her patients and their families, and all over the world via her mentorship, education, training and passion for excellence. She was beloved by so many and will be missed tremendously.

To learn more about her, visit https://www.chop.edu/news/ remembering-lori-j-howell

infertility issues: how to be the best support

by talitha a. mcguinness

Supporting a loved one through infertility can be challenging, but it's incredibly important and meaningful to their journey.

"There's no single way to support a struggling friend. What one person wants another might not. One person might want to talk about her fertility challenges, whereas another might not. One person might benefit from a thoughtful gift, while another might want a hug or someone to simply sit next to her and watch Netflix. Ask your friend what will be best for her. If she says she doesn't know, offer suggestions and see if any of them lands. If they don't, ask her if it's okay for you to check in with her again at a later date," said Darcie Brown, JD, MA, LMFT, Licensed Marriage & Family Therapist. "Conversely, if a friend asks for space or not to talk about the issue, respect that. She might need the distraction of talking about anything other than trying to conceive."

Here are some practical ways you can offer your support:

Listen without judgment: Let your friend or loved one express their feelings openly without fear of judgment. Infertility can be emotionally draining, and having someone to listen can be a relief. Everyone copes with infertility differently, so be supportive and understanding of your loved one's unique needs and feelings.

Be empathetic: Try to understand what they're going through, even if you haven't experienced it yourself. Empathy can go a long way in making them feel understood and supported. They know you cannot help them fix the problem, but being a listening ear can mean the world.

Educate yourself: If you are not already aware, learn about infertility and the various treatments available. This will not only help you better understand what your loved one is going through, but will also enable you to provide more informed discussion and support.

Respect their privacy: Infertility is a sensitive topic, so respect your friend or family member's privacy and only discuss it if they are comfortable doing so. Do not share their situation with others without their consent.

Offer practical help: Offer to accompany them to doctor's appointments, help with household chores, cook a meal, or provide a listening ear when needed. Sometimes, practical assistance can be more valuable than emotional support, as you are helping alleviate some of the stress they are feeling.

Be patient: Understand that they may have good days and bad days. Be patient with them and offer your support consistently, even when they're not feeling their best.

Avoid giving unsolicited advice: While you may have good intentions, giving unsolicited advice can sometimes be more harmful than helpful. Instead, offer your support and let them take the lead in how

they want to be supported and handle their infertility journey.

Be sensitive with your language: Avoid using insensitive language or phrases that may unintentionally hurt them. For example, refrain from saying things like "Just relax and it will happen," or even "Why don't you just adopt?" It might be a good idea to avoid talking about pregnancy and babies altogether for a while. Instead, offer words of encouragement.

Encourage self-care: Encourage them to take care of themselves both physically and emotionally. Suggest activities they enjoy like hiking or traveling, watching a movie, or pursuing a new hobby, whether together or separately. Sometimes couples would rather deal with things alone, while others prefer being surrounded by their family and friends to keep busy. Just let them lead.

Encourage seeking professional help: If you notice that your loved one is struggling to cope with their infertility, encourage them to seek professional help from a therapist or counselor who specializes in infertility issues.

Remind them of their worth: Infertility can sometimes make individuals feel inadequate or less valuable. Remind them of their worth as a person, partner, and friend, regardless of their ability to conceive.

Remember that everyone's experience with infertility is different, so it's essential to tailor your support to the individual's needs and preferences. Just being there for them and showing that you care can make a world of difference.

the best start for best outcomes: optimizing prenatal and neonatal care for infants with treatable rare diseases

special editorial submitted by friends steward partner, Nationwide Children's Hospital

AAs new treatments emerge and diagnostics improve, earlier interventions offer infants with rare metabolic and neurodegenerative conditions a more promising future than ever before.

At Nationwide Children’s Hospital, early identification and bespoke intervention of rare diseases are par for the course. As leaders in rare disease research, accelerating clinical access to genomic testing and developing revolutionary therapeutics, the teams at Nationwide Children’s and the Abigail Wexner Research Institute (AWRI) have a collaborative approach to helping children that is shaping the future of fetal medicine.

“Our infrastructure supports every component of an integrated system of bench-to-bedside research and regulatory support,” says Dennis Durbin, MD, MSCE, president of AWRI. “This institutional support and culture enable our passionate and dedicated teams to work together to tackle diseases with no other treatment options to date.”

Nowhere is the promise of what these teams can do more apparent than in the care for babies with rare genetic disorders.

Early Diagnosis for Better Outcomes

“We’ve reduced the time it takes to get a diagnosis by about 90% or more in the last decade, so much

so that we can make a diagnosis on a research basis in just 30 hours if there is a sick baby,” says Bimal Chaudhari, MD, MPH, genetics and genomic medicine specialist in the Steve and Cindy Rasmussen Institute for Genomic Medicine and neonatologist at Nationwide Children’s.

But identifying genetic disorders postnatally is just the first step. Prenatal testing offers the potential to do more.

Although prenatal identification of rare genetic disorders often occurs only among cases where a prior sibling or family member has already undergone a diagnostic odyssey or the mother has elected to undergo prenatal testing, the technology available for early diagnosis is dramatically more advanced — and rapid — than in years past.

Earlier prenatal diagnosis opens a window to intervene before irreversible organ damage has occurred, making the entire cycle of testing and intervention more worthwhile.

For diseases with effective new therapies, extending screening beyond families with a known history of a disease to the broader population via carrier or newborn screening — or the ever-growing range of options for prenatal genetic testing — is the next step.

“We need to improve opportunities for prenatal testing to identify conditions,” says Oluyinka Olutoye, MD, surgeonin-chief and a world-renowned neonatal and fetal surgeon at Nationwide Children’s. “Now that there is ever-growing potential to intervene medically before a child is born, it expands the utility of prenatal testing. When a diagnosis is made earlier, we can

“Now that there is ever-growing potential to intervene medically before a child is born, it expands the utility of prenatal testing. We can find ways to intervene earlier to improve outcomes.”

find ways to intervene earlier to improve outcomes.”

Reimagining the Future of Genetic Disease

Therapies

Better still than early identification with immediate postnatal treatment, would be therapy while a patient is still in utero.

“As great as is to be able to treat the baby, the world really needs to start thinking fetal,” says Dr. Chaudhari. “We need to get better at translating neonatal interventions into fetal interventions.”

While this option is not readily available, it may soon become possible for a wide variety of genetic disorders and other rare conditions.

“The rapid advancements in genomics are affording us increasingly early opportunities for intervention, both postnatally and prenatally.” says Adolfo Etchegaray, MD, chief of fetal medicine at Nationwide Children’s.

“We have that capability, and it’s certainly an advantage being at a place where many of the new gene therapies are actually being developed — we see genetics not only as a way of understanding a diagnosis but as a potential tool to correct that problem.”

Fetal Center at Nationwide Children’s Leading the Way

The Fetal Center team at Nationwide Children’s already intervenes before birth for a whole host of complicated

diagnoses, including structural heart anomalies and spina bifida. These prenatal interventions allow the tiny patients life-altering and potentially life-saving changes in their health conditions early, at a developmental stage where the chances of recovery are significantly higher.

“I’m really excited regarding what is to come in maternal-fetal medicine, because this would be like fetal therapy 2.0,” says Dr. Etchegaray. “There’s promise to be able to expand the range of interventions to address thousands of conditions, enabling truly personalized medicine. Instead of treating entire organs, we will target specific genes, proteins, or pathways with tailored precision.”

This ideal is something the broader teams at work at Nationwide Children’s hope to achieve for a growing number of rare diseases and complicated diagnoses.

“The Fetal Center has that template in place to leverage a bigger network of experts focused on taking therapy to the fetus before birth,” Dr. Olutoye says. “The experience, the relationships, the expertise in bringing therapies to market and the synergy of all of us intertwined — we can take that technology and expertise upstream, with the common goal of best outcomes for our patients. The future is bright.”

Learn more by visiting our website at NationwideChildrens.org/Fetal.

chiropractic care for pregnancy + beyond

AAccording to Merriam-Webster’s dictionary, stress can be defined as a physical, chemical or emotional factor that causes bodily or mental tension and may be a factor in disease causation. During pregnancy, women experience each aspect of this definition to various degrees - the physical in the obvious bodily changes as we house and grow new life; the chemical in the abundance of both old and new hormones circulating within our systems; the emotional in the reality that life as we know it will inevitably change. The question for many of my practice members then becomes, can we do anything about pregnancy-related stress or should we accept it as “normal” within this phase of life? Do we succumb to pregnancy or can we channel it into a more wonderful experience than is often perceived? Let's take a look at Nervous System-focused prenatal Chiropractic and Webster Technique.

Nervous System-focused Chiropractic

by dr. allison scothorn, dc

Not all Chiropractic is the same, we can boldly begin there. At its more infamous inception in 1895 (however some Eastern documentation dates Chiropractic back as far as 2700 B.C.), Chiropractic earned its place when a presumably deaf man’s hearing was restored after a Cervical adjustment - when a man’s normal bodily function was allowed and able to return because there was no longer interference between the brain and the body hindering that function and therefore creating chaos and disfunction. This is Nervous System-focused Chiropractic care -- it is allowing the body to self-regulate and self-heal by removing unnecessary physical stress placed upon it. It is believing in and facilitating an already able body. Pregnancy is every bit a normal bodily function in which women should feel able without falling victim to sympathetic overdrive, burnout and exhaustion.

To introduce Chiropractic at a time in which a woman’s body is prone to this degree of stress is paramount in mitigating it. Not only does Chiropractic have the ability to make you feel well, but when individualized, specific and intentional, it teaches your body how to actually be well.

Webster Technique

The Webster Technique is one uniquely designed for the caring of women during pregnancy. It puts great emphasis on multiple anatomical key players -- the sacrum, both round and sacrotuberous ligaments, as well as the pelvis. The goal in doing so is to create balance both physically and chemically. In many patients, emotional balance is not far behind.

Webster, when done correctly, facilitates enough space within a woman’s pelvis to ensure that her baby has ample room. Ample room, in turn, encourages optimal fetal positioning. To be clear, the Webster Technique does not flip breech babies and should not be described as so -- this would be the practice of Obstetrics and is outside of the Doctor of Chiropractic’s scope. What a Webster Certified Doctor of Chiropractic does do is create balance within a woman’s body by removing physical barriers and paves the way for both her body and her baby to proceed with the very natural progression of pregnancy and delivery. In addition, the physical balance created within the body reaps physical benefit -- less overall

Not only does Chiropractic have the ability to make you feel well, but when individualized, specific and intentional, it teaches your body how to actually be well.

discomfort, more pain-free movement, and improved quality of life. In terms of outcomes, pregnant women under prenatal Chiropractic care often have faster, less painful deliveries with a lessened likelihood of medical intervention.

The Safety of Prenatal Chiropractic Care

Prenatal Chiropractic care that gently and safely balances the pelvis and improves biomechanical function is paramount in decreasing the reliance on these invasive delivery procedures. The risks associated with prenatal Chiropractic are most frequently very mild. What is most often experienced is generalized soreness in the days following an adjustment that quickly dissipates. Doctors of Chiropractic are well versed in orthopedic and neurological testing to ensure your body will not only tolerate an adjustment well, but that the adjustment itself is also safe for each patient. As pregnancy progresses and your

body both grows and adapts, so should the care you receive. The way you are adjusted at 12 weeks will likely look different than how you are adjusted at 39 weeks, but the goal should always remain the same - to bring symmetry and balance to the body while simultaneously decreasing stress in your baby’s environment.

Chiropractic After Delivery + Why Postpartum Care is Vital

What is your energy relaying to your baby? Are they feeding on a woman bound by stress, discomfort, resentment, pain and/or conflict? Your baby is only as healthy as their mother. This is a phrase we do not use lightly and do use often in my practice. If you are familiar with the concept of family energetics, you have a head start in understanding the point of my aforementioned phrase. In a home, especially as caretakers, we shape one another through our own emotions, feelings and energies. You, as the mother, are the foundation in which your child grows, and while your life is seemingly no longer yours, but shared as theirs, too, it is equally, if not more important, to care for yourself well in the postpartum stage of life, too.

Just as in your pregnancy, you should continuously monitor the physical, chemical and emotional factors that could cause stress in your postpartum life. To proactively seek solutions and help when necessary, is a gift to both you and your baby of which you are each deserving.

Alongside her husband, Dr. Allison Scothorn owns and operates Wellhouse Chiropractic located in Kannapolis, North Carolina. Her practice is home to many families and puts great emphasis on Nervous System-centered Chiropractic care. It has been a dream of both doctors to open a family practice that promotes and facilitates wellness. They practice with the belief that the body gives to you what you give to it and that in all aspects of life, it should be cared for and nourished well.

logan’s recovery

from gastroschisis:

seamless care from pregnancy to toddlerhood

special editorial submitted by friends steward partner, Cincinnati Children's Fetal Care Center

TTurning 4 this year, Logan has a big appetite. He enjoys eating now but his first few months of life were very difficult. When his mom, Laurie, was 20 weeks pregnant, a routine ultrasound alerted doctors about a problem with his intestines.

“It was kind of shocking and a little devastating. Because no mom wants to hear that there's anything different with their babies, you know?” said Laurie Hittle, Logan’s mom. “Especially the first one. That's a little scary.”

Logan was diagnosed with gastroschisis. It’s a birth defect that develops in a baby while in utero. With this condition, an opening forms in the baby’s abdominal wall. The baby’s bowel pushes through this hole. The bowel then develops outside of the baby’s body in the amniotic fluid. As a result, it can become irritated, swollen, and damaged putting the baby’s health at risk. This occurs in about one in every 2,000 births.

“It's hard for a mom to find out that her baby has something, and we need to make sure we are with her in this path from the beginning and taking care of her health and her baby,” said Mounira Habli, MD, Maternal-Fetal Medicine Specialist, Fetal Care Center.

Finding Hope at Cincinnati Children’s Fetal Care Center

Laurie was referred to the Cincinnati Children’s Fetal Care Center. After confirming the diagnosis, Laurie received routine obstetric services from the Fetal Care Center team who monitored the pregnancy closely. In conjunction with specialists in the Intestinal Rehabilitation Center, Cincinnati Children’s was able to provide all the care mom and baby needed.

“We will develop a multidisciplinary team taking care of the mom from the obstetric care first, that means we will meet neonatology will meet pediatric surgery and we will meet the maternal fetal medicine specialist,” Dr. Habli said. “We will develop a plan of care from the time of diagnosis until the delivery.”

From Birth to Treatment

Logan was born at the Cincinnati Children’s Special Delivery Unit in September of 2020. The Special Delivery Unit is one of the only birthing centers located inside a pediatric hospital, eliminating the need for transport after birth and providing immediate access to Cincinnati

Children's renowned expertise, equipment, and care.

Upon delivery, Logan received a staged repair. That is when a plastic pouch or “silo” is placed around the bowel and attached to the belly. Every day, the silo is tightened and some of the bowel is gently pushed inside. When all of the bowel is inside, the silo is removed, and the belly is closed. This takes place over several days and can last up to two weeks.

"I'm always amazed when I see these babies at birth, and we put the bowel in a silo how we're able to get that bowel back into the tummy in such a short period of time,” said Paul Wales, MD, surgical director for the Intestinal Rehabilitation Center. “I'm always still amazed by how the tummy is able to stretch and accommodate the bowel as we are able to reduce it. It's quite remarkable actually."

Advanced, Lifelong Care

For more complex cases where babies suffer from intestinal failure, Cincinnati Children’s is also unique in that it offers a multidisciplinary intestinal rehabilitation program. This includes specialized intestinal reconstructive surgery, long-term nutritional and developmental follow up, remote patient monitoring and transplantation when needed.

“There are many transitions,” says Dr. Wales. “From the NICU to the floor, the floor to home, to school, into adolescence and

to adult care. We support families along the way because life keeps going on despite the diagnosis.”

Logan spent 75 days in the Newborn Intensive Care Unit (NICU) recovering. He has since healed and now returns to the hospital every 6 months to consult with the NICU Follow-up Clinic and other specialists as part of his continuum of care.

“We're very happy that he's here. We're lucky that everything worked out as well as it did,” Laurie said.

Logan at 4 years old is a happy and playful toddler.

about the fetal care center

Experts in maternal-fetal medicine, neonatology and fetal surgery share a passion for providing exceptional, comprehensive care for mothers and babies experiencing complex fetal conditions or high-risk pregnancy.

Our team provides care in an atmosphere of compassion, knowing that patients and families are sometimes dealing with difficult decisions.

We offer prenatal evaluation, fetal diagnosis and treatment services that consider both you and your baby. The Fetal Care Center offers a comprehensive, integrated approach to care:

• Consistency: The same team of physicians cares for patients from diagnosis to treatment and follow-up.

• Collaboration: Physicians from various specialties share their expertise, ensuring each aspect of care is addressed.

• Sophisticated treatment options: Our commitment to research helps us provide the most effective therapies available.

• Family-centered care: We encourage parents to participate in every aspect of their child’s care and we value their input.

• Comprehensive: We provide an unparalleled level of care for mothers and babies, empowering both to thrive.

Fetal Care Center

“We

are with families every step of the way to provide hope and outcomes that truly matter when faced with the most complex fetal diagnosis.”

— FOONG-YEN LIM, MD

Fetal

Care Center

Surgical

Director

One team, one roof, one comprehensive plan from the nation’s #1 children’s hospital

At Cincinnati Children’s Fetal Care Center, our multi-disciplinary team of experts is here to provide compassionate, comprehensive care to meet the health needs of you and your baby.

HOSPITALS

Our Center is distinctly different from other fetal care clinics. Families come to us for continuity of care that begins with prenatal counseling and continues well after their child is born. We can provide screening, testing and intervention services that can improve your baby’s overall well-being. Our new Antepartum Unit allows pregnant women to receive care needed to prolong their pregnancy, reducing risks and enhancing outcomes for their babies. Our Special Delivery Unit is one of the world’s only birthing centers located inside a pediatric hospital—so you’re able to recover down the hall from your baby. And from the moment your baby is born, they are surrounded by the expertise, excellence and exceptional care that only Cincinnati Children’s NICU and CICU can offer.

HONOR ROLL

NILMDTS REACHES EVERY STATE IN THE UNITED STATES AND HAS BEEN PRESENT IN 40 COUNTRIES WORLDWIDE.

~ Art Williams

PHOTOGRAPHER DIGITAL RETOUCH ARTIST

Volunteer your time and talent to provide remembrance portraits to parents suffering the loss of a baby.

The success of NILMDTS is dependent on the post-photography digital retouching skills of our Digital Retouch Artists (DRA).

MEDICAL AFFILIATE PROGRAM

The medical program provides medical personnel with the tools needed to capture images when a volunteer is unable to access a facility.

Find more information to start making an impact in your community!

nowilaymedowntosleep.org/volunteer

cord blood banking: is it a good fit for your family?

AAs you eagerly await the arrival of your little one, nothing is more important to you than ensuring the health and safety of your child. At this incredible time of your life, have you considered cord blood banking?

What is Cord Blood Banking?

According to the Cleveland Clinic, cord blood banking is when blood from your baby’s umbilical cord and placenta are collected after your baby’s delivery, and then carefully stored. This cord blood is a rich source of stem cells known as hematopoietic stem cells, which have the potential to treat or even cure a wide range of illnesses later in life. These include blood disorders, genetic disorders, immune diseases, and certain types of cancer, like leukemia and lymphoma. Additionally, cord blood can also be donated to help others in need during a medical event or can be used for medical research.

by erika k. wolf

With the first successful transplant conducted in Paris on a six-year-old boy in the late 80s, and then being made more publicly available in the early 90s, this once seemingly unkown

medical opportunity is now much more widely considered by expectant parents as a way to safeguard their child's health. Over the years, the science has continued to prove the health benefits, and the American College of Obstetrics and Gynecology claims that using stem cells in cord blood to treat a disease has better benefits compared with using those in bone marrow.

Among those benefits, stem cells from cord blood can be given to more people than those from bone marrow, as more matches are possible. It is also far easier to collect cord blood than bone marrow, with no pain, discomfort or risks involved, and stem cells can be stored for far longer times until needed. Additionally, stem cells in cord blood can be used to strengthen the immune system during cancer treatments.

Types of Transplants

In cord blood transplants, there are two types: autologous and allogenic. In an autologous transplant, the cord blood collected at birth is used by that same child. While this type was once rare, research published by the National Institutes of Health shows that virus-based methods and gene editing are making it possible.

In an allogenic transplant, another person’s stem cells are used to treat a child’s disease. With this transplant, the donor can be a relative or be unrelated to the child, as long as there is a match.

Which Cord Blood Registry Should You Choose?

It’s important to do your research to find a service that is safe and secure. There

are many state-of-the-art facilities designed to ensure the viability of your child's cord blood, with teams always on hand to support you throughout the process. Having a discussion with your medical team can also help you make an informed decision.

Are all Registries the Same?

There are public and private options available. Public banks make your baby’s cord blood available to patients in need, so it is not only reserved for your family. Both the mother and the donor's blood is tested for genetic disorders and infections before storage. However, there is no cost involved.

Private banks require the same type of testing before storage, but reserve your baby’s cord blood for your family only. Knowing your comfort with how your child's stem cells will be used is paramount in making a decision on which type of registry you select.

Once-in-a-Lifetime Opportunity

Cord blood banking was designed to provide an added layer of health security for your child, to provide help to those who are dealing with a severe medical condition or disease, and to allow healthcare providers to conduct vital medical research. Though it is entirely optional, by preserving your child's cord blood, you could be providing a potential lifeline for their future wellbeing, for your peace of mind, for another patient, or for medical breakthroughs that benefit everyone.

Cord Blood Registry:

*private blood bank

*has stored over 1 million newborn stem cell samples

*involved in more clinical trials than other blood banks

*offers newborn stem cell educators/experts

*learn more at cordblood.com

Cord Blood Banking:

How the cord blood retrieval and donation process works

AAP:

American Academy of Pediatrics encourages use of cord blood banks.

American College of Gynecology: Frequently Asked Questions

Health Resources + Services Administration: Unbiased options for cord blood banking

by talitha a. mcguinness

myths about postpartum depression: what we all should know

TThere are several different types of mental illness related to childbirth, with different symptoms and risks. It can be confusing because "postpartum depression" or PPD, is often used as an umbrella term to cover many different conditions that can occur during pregnancy or postpartum. It is possible for women to have symptoms such as panic and anxiety, obsessive intrusive thoughts, anger, and mania, without primary depression.

Postpartum depression is a form of clinical depression that affects parents after childbirth. It's not simply feeling down or sad; it's a serious mental health condition that requires attention and treatment. PPD is more common than many people realize. It affects about 1 in 7 women who give birth. However, it can also affect fathers and partners, although less frequently. It can occur shortly after giving birth or even months later. Symptoms

can include feelings of sadness, hopelessness, fatigue, changes in appetite, difficulty bonding with the baby, and even thoughts of harming oneself or the baby.

Several factors can contribute to postpartum depression, including hormonal changes, lack of sleep, a history of depression or anxiety, and the stress of caring for a newborn. It's essential for those experiencing symptoms to seek help from a healthcare professional.

postpartum depression add to her fear and resulting risk.

Postpartum depression is often surrounded by myths and misconceptions. Here are a few:

Myth: It's just the "baby blues." While it's common for new mothers to experience mood swings, known as "baby blues", PPD is more persistent. It can interfere with daily functioning and require treatment.

...a severely depressed or anxious mom without proper support and information can be at risk of suicide because she does not realize that she will recover.

Treatment options may include therapy, support groups, medication, or a combination of these. Support from loved ones and understanding from the community are also crucial in helping individuals navigate through this challenging time.

PPD is often accompanied by misinformation and erroneously linked to mothers who commit infanticide, abuse, or neglect their children. Postpartum Support International states that "there is no direct correlation between infanticide, abuse or neglect and perinatal mood and anxiety disorders."

Rather than being at risk of hurting others, a severely depressed or anxious mom without proper support and information can be at risk of suicide because she does not realize that she will recover. She is likely to fear that she is not a good mother, and myths and mistaken descriptions of

Myth: Only women with a history of depression get PPD. While a history of depression can certainly increase the risk, PPD can affect any woman, regardless of her mental health history. It's important that you talk with a professional to receive more information about a possible diagnosis and treatment.

Myth: PPD only occurs immediately after childbirth. Postpartum depression can develop anytime within the first year after giving birth, and sometimes even beyond that.

Myth: PPD is purely hormonal. While hormonal changes can contribute to PPD, it's a complex condition influenced by a variety of factors, including genetics, life stressors, lack of support, and psychological factors.

Myth: Women with PPD don't love their babies. PPD doesn't mean a lack of love or

attachment to the baby. Many mothers with PPD still deeply care for their infants but struggle with overwhelming feelings of sadness, anxiety, or hopelessness.

Myth: PPD is a sign of weakness or inadequacy. PPD is a medical condition, not a character flaw. It can happen to anyone, regardless of their strength or abilities as a mother.

Myth: You just need to tough it out. PPD is a serious condition that requires professional treatment. Ignoring or minimizing symptoms can prolong suffering and negatively impact both the mother and baby.

Myth: Having PPD means you're a bad mother. Experiencing PPD doesn't make someone a bad mother. Seeking help and treatment is a courageous step towards better mental health for both the mother and her child, as PPD may lead to difficulties in crucial day-to-day activities such as breastfeeding, disrupted sleep patterns for both the mother and baby, and potentially long-term consequences for the child's development if left untreated.

It's essential to recognize and dispel these myths to promote understanding, support, and effective treatment for both women and men experiencing postpartum depression. With proper treatment and support, most people with PPD can recover and go on to enjoy a healthy bond with their baby. It is especially important for new mothers to prioritize self-care and to seek help when needed. This may involve taking as many breaks as necessary, getting enough rest, eating well, staying physically active, and seeking support from loved ones or mental health professionals.

ucsf leads the way in hydrops research with help from the brianna marie and fetal health foundations

IIn early 2024, The Brianna Marie Foundation donated $20K to the Fetal Health Foundation to continue our mutual support of the University of California at San Francisco Hydrops Center of Excellence. According to the Center’s website, "A fetus with hydrops fetalis has an abnormal buildup of fluid under the skin, in the abdomen, or around the lungs or heart. Hydrops is usually caused by another medical condition that affects how the body manages fluid, such as a genetic disease, viral infection, or birth defect ... Hydrops carries high risks of stillbirth, early delivery, and complications for the newborn and pregnant person."

The Center's specialists have decades of experience diagnosing and treating pregnancies with hydrops and includes internationally recognized experts from maternal-fetal medicine, genetics, radiology, pediatric

surgery, neonatal medicine, pediatric cardiology and many other subspecialities.

About the Brianna Marie Foundation

In March of 2012, Aran Hissam’s baby girl, Brianna Marie, passed away from Hydrops. Later that year, she started a foundation in her daughter’s name.

“When we were diagnosed, Dr. Quintero offered us hope. That is why I started the Brianna Marie Foundation. I don’t want parents to think there are no options,” Aran explained.

Over the years, Aran’s work has raised more than $800K to advance fetal medicine.

“The Fetal Health Foundation was there for me from the beginning. Dr. Quintero connected me to Lonnie [Somers, co-founder of Fetal Health Foundation] just after Brianna’s passing, and later,

I worked on the [FHF] board for years,” said Aran. “I’m dedicated to Fetal Health [Foundation] because they do so much to help people find care, make contacts, and offer connections.”

“I don’t believe things just happen,” said Aran. “This is what I’m supposed to be doing. It’s why I was put on this earth, and I will do it as long as I can.”

Lonnie believes Aran has created an incredible legacy for Brianna Marie and her short life.

“The work Aran has done in providing hope, support, and research, is making an amazing difference in Fetal Hydrops treatment and research,” he said. “We could not be more honored and grateful to Aran and the Brianna Marie Foundation for their generosity and support that allows us to continue our grant programs to USCF.”

HHemolytic disease of the fetus and newborn (HDFN) is a rare and potentially life-threatening disease where maternal antibodies, or alloantibodies, produced in a pregnant person’s immune system cross the placenta and attack fetal red blood cells — causing fetal hemolysis leading to anemia.1 According to the American Journal of Obstetrics and Gynecology, in the U.S., up to 80 out of every 100,000 pregnancies are affected by HDFN every year.² HDFN can lead to serious health complications for the baby, such as anemia, jaundice, or edema (fluid buildup). The severe form of HDFN can lead to hydrops fetalis, which is a condition in which large amounts of fluid buildup in the fetus or neonate’s tissues and organs, which can be life threatening.

HDFN is caused when there is a mismatch in red blood cell antigens of the pregnant person and fetus, or maternal alloimmunization – the most common causes of which is blood transfusion and pregnancy. Typically, HDFN does not develop in the mother’s first pregnancy because the baby is born before many of the antibodies have been produced. HDFN occurs most often in later pregnancies, after the mother’s immune system has already developed antibodies from an earlier pregnancy.

Determined to protect what matters most Have you experienced a hemolytic disease of the fetus and newborn (HDFN) pregnancy? If so, it’s normal to feel concerned about the health of your next child. Researchers are currently conducting a research study. Consider joining the Phase 3 AZALEA trial, a clinical trial currently enrolling women who are at risk for severe HDFN who have a history of severe HDFN in a prior pregnancy.

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special editorial submitted by champion steward partner, johnson + johnson

You may be able to participate in the AZALEA trial if you:

• have tested positive for red cell antibodies

• have been diagnosed with HDFN in a prior pregnancy

• are 18 to 45 years old

If you are interested in participating, the trial doctor or staff will review additional information with you to assess if you can join the study.

“There is a significant unmet need to help address the serious and life-threatening health consequences of HDFN,” said Katie Abouzahr, M.D., Vice President, Autoantibody and Maternal Fetal Immunology Disease Area Leader, Johnson & Johnson, “Our aspiration is to transform the existing paradigm for families who endure the consequences of this potentially devastating disease.”

1 Hemolytic disease of the newborn. Medline Plus. Accessed: November 18, 2022. https://medlineplus.gov/ency/article/001298. htm.

2 Delaney M and Matthews D. Hemolytic disease of the fetus and newborn: managing the mother, fetus, and newborn. Hematology Am Soc Hematol Educ Program (2015) 2015 (1): 146–151. doi: https://doi.org/10.1182/asheducation-2015.1.146.

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