Connexions Spring 2022 by Connexions

conneXions www.fetalhealthfoundation.org

linking the medical & personal worlds

addressing disparities + inequities

PPROM: what to do if it happens to you superfoods to support health the story of addy + lily pregnancy + the road 1

connexions

spring 2022

of fetal syndromatic issues

The image depicted contains models and is being used for illustrative purposes only. Janssen Research & Development, LLC © JRD, LLC 2022

Creating a future where rare 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 rare maternal-fetal conditions, including hemolytic disease of the fetus and newborn (HDFN), fetal/neonatal alloimmune thrombocytopenia (FNAIT) and congenital heart block (CHB) will be found only in the pages of history books. Learn more at www.janssen.com

a look at the inside... 6

pprom and what to know if it happens to you

special feature: a reason to hope: living with cdh

research spotlight

addressing disparities and inequities in maternal and infant health in the US

what's that in your bag?

special feature: UC Davis lab develops fetal oximetry device to prevent unnecessary c-sections

recommended reading

superfoods to support women's health

neonatal alloimmune thrombocytopenia: one family's journey

c-section vs. vaginal delivery: which is right for you?

special feature: the story of addy + lily

special feature: advocacy from anguish: bethany weathersby's story

creative tips for sharing the news

special feature: Oregan Health + Science University expands fetal care program

pregnancy + the road: staying safe + comfortable in the car

special feature: receiving a birth defect diagnosis: help with understanding your options

exercise during + after pregnancy: the dos and don'ts

the struggle is real: a parenting perspective to which we can all relate

cover photo courtesy of Lauren Winslow

52 connexions

letter from the editor... Just like the birth and reemergence of spring and new life each year, it is refreshing to see everyone getting back to normal, seeing the insides of their offices again, cheering their kids on from the side lines, traveling and making memories, and reaquainting with friends and loved ones. If nothing else positive came from the past few years, we have learned to take better care of ourselves, to not take things for granted, and to enjoy life to every extent possible. In this year's issue of Connexions, we highlight our partner centers and all the great things they are doing, we shed light on disparities within the maternal/fetal health community, we focus on helping women choose healthier food options to help them better fuel and heal their bodies, and how to exercise safely during pregnancy. Whether you are expecting your first or fourth, or just need a little inspiration for raising your family, Connexions has a little something for everyone. At the Fetal Health Foundation, we are always honored to be connected to the amazing doctors and researchers who are studying fetal syndromes, learning more about them, and how to better support patient families when diagnosed. We never want a family to wish they had known more or be in a situation where they do not know where to turn for help. We have been blessed to continue working with some great organizations and centers to help provide HOPE in getting patient families into the right hands for life-saving care. We hope that you will continue on this rewarding journey with us, and help support our mission whenever you are able. We cannot do this groundwork without the financial support of people and followers just like you. You are the HOPE that helps us bring light to the darkness. Much love and appreciation,

connexions

Contributors: viveka prakash-zawisza, md lena borrelli foong-yen lim, md maureen pray talitha mcguinness michelle thornton

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.

no matter how large or small their spark, we remember each baby gone too soon.

fetalhealthfoundation.org

photo courtesy of ethan hoover, 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

photo courtesy of mart production, by pexels

the overall neonatal survival rate was over 80 % for pPROM between 20 and 23 6/7 weeks of gestation, and 78 % of survived newborns were with severe morbidities at the time of discharge. - European Journal of Obstetrics & Gynecology and Reproductive Biology, September 2019

pprom + what to know if it happens to you 6

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Preterm premature rupture of the membranes (PPROM) is a pregnancy complication of which most have never heard. However, the PPROM Foundation reports that as many as 30-40% of preterm births are caused by PPROM1. For a complication that is not as widely known, its impacts can be severe and lasting. The good news is that intervention and monitoring can help prevent preterm delivery or help strengthen your baby's lungs in the event delivery is necessary. Let's take a closer look at the condition and what to know if it happens to you.

PPROM is a condition where the amniotic sac surrounding your baby ruptures before week 37 of pregnancy. Most people know that once the sac ruptures, there is a higher chance of infection, as well as preterm delivery.

*A sudden gush of fluid from your vagina

So what causes PPROM? In most cases, the cause is largely unknown, yet, the Children's Hospital of Philadelphia reports that there are underlying causes that may by linked to PPROM, including:

It is important that if you notice any leaking, to call your healthcare provider right away. They will likely schedule a scan to determine if your amniotic sac has ruptured before advising on a plan of care.

*Low socioeconomic conditions (proper prenatal care may not be readily available/affordable for women from lower socioeconomic backgrounds) *Previous preterm birth *Vaginal bleeding *Smoking during pregnancy PPROM is also one of the higher risk side affects from fetal intervention. The Fetal Health Foundation’s Fetal Therapy Think Tank Innovation Program will be working on new research with multidisciplinary stakeholders in addressing the treatment and prevention (when fetal intervention is needed) of PPROM. Lonnie Somers, Founder of the Fetal Health Foundation, said, “It is incredibly exciting to have the Think Tank looking to address, research, and find solutions that will improve the outcomes and reduce risks of fetal intervention. This is what Fetal Health and the Fetal Therapy Think Tank were designed to do, and to see this coming to fruition is more than we could have ever dreamed.”

What are the symptoms of PPROM?

Symptoms can present differently in each pregnancy and can include:

*Mild to moderate leaking of fluid from your vagina *A feeling of wetness in your vagina or underwear

How is PPROM diagnosed?

Your healthcare provider will ask you questions about your pregnancy. They will also ask you about your symptoms and when they started before giving you a physical exam. A speculum will be used to look inside your vagina, as your healthcare provider is looking for fluid leaking from your cervix. They may also remove some fluid for testing whether it is amniotic fluid, vaginal fluid, or urine. An ultrasound scan may be used in conjunction with a physical exam to help measure the amount of amniotic fluid around your baby. However, it is important to note that an ultrasound scan is not a viable option on its own, as a slow leak in amniotic fluid would be too hard to determine. Together, these tests will help determine next steps.

What are possible complications of PPROM?

As mentioned previously, PPROM happens in many premature births. A baby born too early may have serious problems, including requiring ventilation and feeding tubes, among other special needs. Other complications include: *Placental abruption, or a separation of the placenta from the uterine wall *Umbilical cord prolapse due to little to no amniotic fluid; can

cause lack of oxygen to the baby * Chorioamnionitis, an infection that can be fatal if not treated; delivery is necessary to prevent sepsis in the mom In each of these cases, it is important that you know your hospital's capabilities when it comes to delivering high risk pregnancies. Do they have the surgical and neonatological staff and equipment for a high-risk delivery? Do they offer a qualified Neonatal Intensive Care Unit (NICU) to care for your baby if born early and with special needs? These are great questions to ask of your healthcare provider in the event you require these higher level qualifications.

How is PPROM treated?

Treatment will depend on your symptoms, how long you have had them, how far into the pregnancy you are, and the general health of mom and baby. It will also depend on how severe your condition is. If you are recommended for bed rest and a hospital stay, your healthcare provider will watch you and your baby closely. They may monitor for signs of labor or contractions, as well as your baby's movements and heart rate. They will also watch for signs of infection, which can include fever or pain, or signs that your baby is in distress. If you are advised to take medication to help with PPROM, you may be prescribed one or more of the following: *Corticosteroids. These medicines can help your baby’s lungs grow and mature. If your baby is born early, their lungs may not be able to work on their own. *Antibiotics. These will do the job of preventing or treating a possible infection. connexions

P P R O M

Preterm Premature Rupture Of Membranes

*Tocolytic medicines. These are used in the event of preterm labor, mainly to buy some time.

Induction of labor

If your condition is severe enough, and your baby's health is at risk, your healthcare provider may give you medicine to help start labor. However, not to worry too much, as your healthcare provider likely will not induce labor until at least week 34 of pregnancy. Timing is always crucial, especially when it comes to the health and well-being of you and your baby. Rest assured that your healthcare provider is monitoring in several different ways to make the best decision possible for your plan of care in this often tricky situation.

What can I do to prevent it?

It's all about timing... The PPROM Foundation advises that if you suspect amniotic fluid leaking to consult with your healthcare provider immediately. Other things to do to help mitigate further risk to premature birth include bed rest, managing stress factors and staying as hydrated as possible. For more resources and information, visit the PPROM Foundation at aapprom.org.

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Since the cause of PPROM is often unknown, there is no way to stop the condition from happening. Schedule an appointment as soon as you know you’re pregnant. If you smoke, ask your healthcare provider how to quit. Beginning or continuing to exercise, as well as improving your nutrition are additional ways to help prevent pregnancy complications down the road. Keeping up with your prenatal checkups and any testing or monitoring are key to keeping tabs on everything as it happens (and as a possible preventative measure). Before your healthcare provider visits, write down any questions you want answered. Receiving a diagnosis with all of its implications of possible treatment, medication, side effects, etc. can be overwhelming. It's easier to remember when you have notes to which you can refer.

What if my baby is born early due to PPROM?

The age of viability is currently held at 24 weeks in the United States, but women and their

fighters for babies challenge this barrier year after year. There are certainly complications with prematurity, but these are circumstantial around the cause of preterm labor, the gestational age at which the baby is born, the conditions under which the baby is born, and so on. One specific complication that can result from PPROM is pulmonary hypoplasia. This occurs because of little amniotic fluid in the sac, preventing the baby from practice breathing and getting the lungs prepared for the real deal. Lung development and respiratory support once the baby is born will be key to helping the baby's growth and survival. These babies require care in the NICU and often go home with respiratory support. More promising, the PPROM Foundation cites a study showing a 90% survival rate for infants impacted by PPROM between 18-24 weeks who were delivered after the age of viability.² While the babies required lengthy stays in the NICU, their success proves what can be done with proper care and treatment. The most important thing to take away from understanding PPROM is that premature labor is not the end. There are resources for information and advocacy, and with agressive monitoring and treatment, you and your baby will be in good hands. 1. ACOG Practice Bulletin No. 160: Premature Rupture of Membranes. Obstet Gynecol. 2016 Jan. 127 (1):e39-51. 2. Brumbaugh JE, Colaizy TT, Nuangchamnong N, et al. Neonatal Survival After Prolonged Preterm Premature Rupture of Membranes Before 24 Weeks of Gestation. Obstetrics & Gynecology. 2014;124(5):992-998. doi:10.1097/ aog.0000000000000511.

Introducing you to Fetal Health Foundation’s Fetal Therapy Think Tank. We are a diverse consortium of fetal medicine stakeholders working to advance fetal diagnosis and treatment. The key initiatives are:

Support: To provide optimal maternal and fetal safety, and outcomes, by promoting standardization and certification for quality of care.

Education: To provide current and factual medical information on various fetal syndromes and anomalies. To generate interest in fetal medicine and provide educational opportunities.

Innovation: To collaborate with various stakeholders and disciplines in sharing and developing solutions that will lead to enhanced outcomes.

We are creating the future for prenatal treatments of fetal syndromes.

Join alongside us for the journey.

FETAL THERAPY THINK TANK

A Reason to Hope: Living With CDH A Reason to Hope: Living With CDH Four-year-old Eli Stevenson is like most other kids his age in many ways. He started preschool and loves learning math he’s Four-year-old Eli Stevenson is like most other kids his—age inalready many a whiz,He tackling even might need a calculator for. ways. startedproblems preschool andadults loves learning math — he’s already He’s often found with a toy in hand and is especially attached to a whiz, tackling problems even adults might need a calculator for. his Rescue Bots. Eli’s and moms, Debbie and Jennifer, He’sTransformers often found with a toy in hand is especially attached to say he’s a happy, silly child, who doesn’t know he’s different from his Transformers Rescue Bots. Eli’s moms, Debbie and Jennifer, others. in onesilly way, he is.who doesn’t know he’s different from say he’sBut a happy, child,

others. But in one way, he is. Eli was born with congenital diaphragmatic hernia (CDH), which means holecongenital in his diaphragm allowed other Eli was that bornawith diaphragmatic herniaorgans, (CDH), including which his stomach, spleen and colon, to move into his chest, preventing means that a hole in his diaphragm allowed other organs, including his lungs fromspleen developing fully.to Doctors firsthis noticed pregnancy stomach, and colon, move into chest,the preventing was unusual when Jennifer was 18 weeks along, and after his lungs from developing fully. Doctors first noticed the pregnancy additional scans, EliJennifer was given 50% chance of survival. was unusual when wasa18 weeks along, and after additional scans, Eli was given a 50% chance of survival. “We were terrified”, Jennifer recalls, “but we were determined to give him best possible chance.” “We werethe terrified”, Jennifer recalls, “but we were determined to give him the best possible chance.” Jennifer and Debbie were initially referred to a hospital in Boston for prenatal butwere quickly learned that one the country’s Jennifer and care, Debbie initially referred to a of hospital in Boston bestprenatal resources forbut treating children with right here in for care, quickly learned thatCDH onewas of the country’s Colorado. The Colorado Fetal Care Center at Children’s best resources for treating children with CDH was right Hospital here in Colorado. The Colorado Fetal Care Center at Children’s Hospital

Colorado is one of just a few comprehensive maternal fetal care programsisinone theof world a dedicated CDH program Colorado just aand fewhouses comprehensive maternal fetal care with somein ofthe theworld country’s best survival rates. When Jennifer programs and houses a dedicated CDH program and foot in survival the hospital two weeks after that withDebbie some offirst thestepped country’s best rates. When Jennifer initial scan, they met with multiple specialists, including Kenneth and Debbie first stepped foot in the hospital two weeks after that Liechty, MD, a renowned pediatric fetal surgeon and co-director initial scan, they met with multiple specialists, including Kenneth of the Colorado Fetal Care Center. fetal He provided their first Liechty, MD, a renowned pediatric surgeonone andofco-director nuggets of hope.Fetal Care Center. He provided one of their first of the Colorado nuggets of hope. “[The doctors] confirmed he had a left-side CDH and said they thought it was confirmed manageable. went there, we said never looked “[The doctors] he Once had a we left-side CDH and they back,” Jennifer says. “We knew this where we were supposed to be.” thought it was manageable. Once we went there, we never looked back,” Jennifer says. “We knew this where we were supposed to be.” Eli was delivered on April 27, 2017, surrounded by a whole team of specialists. As soon as he born, they snapped into action, Eli was delivered on April 27,was 2017, surrounded by a whole team working hard to him— process ultimately took of specialists. Asstabilize soon as he wasaborn, theywhich snapped into action, two hours. Once stable, the team was ablewhich to take x-rays of took working hard to stabilize him— a process ultimately Eli’s body, revealing thatthe his team heartwas had able migrated under hisofright two hours. Once stable, to take x-rays armpit, a risk that could lead to a pulmonary hypertensive crisis. Eli’s body, revealing that his heart had migrated under his right At just 4 days old, Eli underwent his first surgery with Dr. Liechty armpit, a risk that could lead to a pulmonary hypertensive crisis. aimed correcting CDH. It was success. At just at 4 days old, Elihis underwent hisafirst surgery with Dr. Liechty aimed at correcting his CDH. It was a success.

From there, Eli remained in the Children’s Colorado NICU for two months, constantly by notColorado only the incredible From there, Eli remainedsurrounded in the Children’s NICU for expertise of his doctors and nurses, but also the constant two months, constantly surrounded by not only the incredible love and support of his moms. With the of the Children’s expertise of his doctors and nurses, but help also the constant Colorado team, they still foundWith waysthe to make early days as love and support of his moms. help ofthose the Children’s special asteam, possible, his complicated situation. Colorado theydespite still found ways to make those early days as special as possible, despite his complicated situation. “The nurses were all phenomenal and even brought us homecooked meals andall would make dinner us “The nurses were phenomenal and reservations even broughtto usgive homesome time to ourselves, even though we never went,” Debbie cooked meals and would make dinner reservations to give us remembers. helped us make sure could get Eli baptized. some time to“They ourselves, even though wewe never went,” Debbie We really wanted to do this before his surgery. Eli was too sick remembers. “They helped us make sure we could get Eli baptized. to take to wanted a regulartoOR, so they ultimately made room We really do this before his surgery. Elihis was toointo sick sterile theOR, chaplain came and baptized him.” to takeOR to awhile regular so they ultimately made his room into sterile OR while the chaplain came and baptized him.” The nurses and doctors weren’t the only ones who helped Jennifer, Debbie and Eli through the only rollercoaster surgeries, The nurses and doctors weren’t the ones whoof helped chest tubes and tests. The family formed a community with Jennifer, Debbie and Eli through the rollercoaster of surgeries, others going through the same thing. chest tubes and tests. The family formed a community with others going through the same thing. That support network was critical come June 2017, when Eli, Debbie and Jennifer left thecritical NICU for home. the Eli, ups That support network was come JuneThrough 2017, when and downs Eli’s early several ICU visits, COVID-19 and Debbie andof Jennifer leftyears, the NICU for home. Through the ups inpatient stays, the Children’s Colorado team has remained and downs of Eli’s early years, several ICU visits, COVID-19 and an important part the Stevensons’ lives. They set up inpatient stays, theofChildren’s Colorado team hashelped remained oxygen in Eli’s home and they have continued to monitor hisup an important part of the Stevensons’ lives. They helped set health, giving theand care that ensures he cantocontinue oxygen in Eli’shim home they have continued monitorlearning his math, growing alongside histhat brother Zach the silly, health, giving him the care ensures heand canbeing continue learning happy growing kid he is.alongside his brother Zach and being the silly, math, happy kid he is. Eli is currently monitored by the Children’s Colorado Pulmonary Hypoplasia clinic every sixby months and will Colorado be followed closely Eli is currently monitored the Children’s Pulmonary until he’s 18. In the meantime, his family is doing all they can Hypoplasia clinic every six months and will be followed closely to give back. There is still plenty the scientific community until he’s 18. In the meantime, hisfor family is doing all they can learnback. about CDHisand Jennifer have community dedicated to give There stillDebbie plentyand for the scientific themselves to that They also support have otherdedicated families to learn about CDHcause. and Debbie and Jennifer with babies in byThey curating withother all the essentials, themselves to the thatNICU cause. alsobags support families answering questions and sharing Eli’s inspiring story. with babies in the NICU by curating bags with all the essentials, answering questions and sharing Eli’s inspiring story.

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

Debbie and Jennifer say their Debbie and Jennifer say their message to those families is message to those families is simple: “There is always hope.” simple: “There is always hope.”

© 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-180144D-2022-02 © 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-180144D-2022-02

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. Here, we care for kids like Oliver 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

© Children’s Hospital Colorado 2021 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-2022-03

connexions

photo courtesy of michal jarmoluk, by pixabay

research spotlight

Maternal-fetal Immune Disorders QuickFire Challenge (QFC): Innovating for Health Equity supported by the Janssen IMM DE&I Working Group and the IMM Translational Medicine Team, in collaboration with Johnson & Johnson Innovation and the Office of the Chief Medical Officer (OCMO) Health of Women team. Women of color are at higher risk for pregnancy complications and potential disease flares that can negatively impact health outcomes for both them and their children. US-based innovators are encouraged to submit datadriven research methodologies, tools, or technologies that can help us better understand how immune-mediated diseases manifest and impact pregnancies and birthing experiences in diverse racial and ethnic communities. The best proposed solutions will receive grant funding from a total pool of $500,000, access to the Johnson & Johnson Innovation – JLABS network, and mentorship. Applications will be accepted through June 3, 2022. For more information, visit: http://jji.jnj/maternal-fetal. Fetal Care Center Study, conducted by Yale University and endorsed by the North American Fetal Therapy Network, the Fetal Therapy Nurse Network, and the Fetal Health Foundation. Researchers are aiming to best measure the quality of care at fetal care centers. If you have received care for a fetal syndrome within the last 5 years, you may be eligible to participate. Your experience is invaluable to the research. Visit www.tinyurl.com/FetalCareSurvey to learn more or participate. Life-Limited Fetal Condition Study, conducted by Texas Woman's University. If you chose to continue your pregnancy after a diagnosis of a life-limiting fetal condition, your experience around grief and pregnancy/infant loss may be important to fetal research. Visit www.PsychData.com and enter Survey ID #194469 to see if you are eligible to participate. connexions

in maternal and infant health in the US

by viveka prakash-zawisza, md, ms, mba

Healthcare inequities have been defined by the Association of State and Territorial Health Officials (ASTHO) as “Differences in health outcomes which are… unnecessary and avoidable… unfair and unjust”1.. Among all populations impacted by healthcare inequities, perhaps the most vulnerable are pregnant individuals and their infants.2 The National Perinatal Association (NPA) strives to improve healthcare access and eliminate disparities through partnerships and collaboration with organizations that advocate for evidence-based solutions at the local and national level, including the NICU Parent Network (NPN), the National Association of Perinatal Social Workers, the California Perinatal Quality Care Collaborative, Connect2NICU, and Hand to Hold, among others. NPA is working to increase awareness of disparities in healthcare access, healthcare quality, and health outcomes, and to develop solutions to mitigate these problems in the United States, particularly as they relate to social determinants of health. Social determinants of health (SDOH), as defined by the CDC and WHO are: “the conditions in which people are born, grow, live, work and age. These 14

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photo courtesy of ivan samkov, by pexels

addressing disparities + inequities

circumstances are shaped by the distribution of money, power, and resources at global, national, and local levels. The social determinants of health are mostly responsible for health inequities - the unfair and avoidable differences in health status seen within and between countries”.1,2 The 5 major categories that can determine health are: •

Biology and genetics. Examples: sex and age

•

Individual behavior. Example: substance misuse

•

Social environment. Example: discrimination

•

Physical environment. Example: where a person lives

•

Health services. Examples: Access to quality health care, insurance status

The impact of health care disparities in the perinatal period has become increasingly highlighted in the literature over the last ten years. Research has clearly demonstrated higher rates of maternal and infant mortality in African American, Latine, and Native American families.2 Poverty, rural residence, and substance use all increase risks for

poor outcomes.3, 4 Variables that have been shown to exacerbate these disparities include systemic barriers to healthcare access (i.e., transportation, employment, and remote clinics), clinician bias, and cultural ignorance and language barriers that impact family-clinician communication.1, 5 Individual implicit bias and systemic racism are major root causes of the disparities and inequities that persist throughout every domain of American life and are evident in the stark racial disparities in healthcare outcomes for people of color.

Evidence of Disparities Based on Race, Ethnicity, and Sexual/Gender Identity Black women in the United States experience a maternal mortality rate that is three to four times higher than white

Asian women may have a higher rate of gestational hypertension, especially women from the Philippines and Samoa. They are also at higher risk of developing gestational diabetes. 2

Latine women have higher rates of congenital abnormalities in their infants than other women. This may be related to low intake of folic acid in this population.2 They are at higher risk of developing gestational diabetes and their infants are at higher risk for being born preterm or ill, requiring NICU hospitalization. 1,7 Latine women breastfeed at a higher rate than any other group, including white women.1

These barriers include:

Native American women and Alaskan Native women are at higher risk of gestational diabetes and often receive late prenatal care that impact maternal and infant outcomes.2 Low socioeconomic status and rural residence appear to be significant risk factors for these women. 3

•

Language

•

Cultural expectations around pregnancy & birth

•

Transportation

•

Lack of or inadequate health insurance

Additionally, there are intersecting psychosocial circumstances and family structures that make individuals vulnerable to health disparities.

•

Low socioeconomic status

•

Lack of local health care providers

•

Limited number of clinicians who are racially and ethnically diverse

•

Implicit and explicit bias in clinicians regarding racial, ethnic, and sexual/gender differences

•

Poorly educated providers on the needs and concerns of all pregnant individuals and their families

•

Pregnant individuals’ fears of judgmental and uncaring clinicians and resulting criminal and civil child welfare consequences related to their birthing and life decisions

Queer and transgender pregnant

The National Perinatal Association recommends addressing the issues of perinatal health care access and disparities by first acknowledging their existence. women. Their infants are twice as likely to die in the first year of life. 6 In addition, Black women are more likely to experience pregnancy complications such as hypertension, gestational diabetes, and obesity - with these conditions being more severe in Black women than white women.2 Black women have lower rates of initial breastfeeding and/or continuing breastfeeding to six months of age. 6

of these barriers in daily medical practice as well as on a national level must be priority for providers.1-10

individuals experience a lack of understanding on the part of clinicians regarding their needs and concerns. Systematic barriers include heterosexism, restrictive labor room guidelines, and gender bias. These challenges are even more significant for Black, Latine, and other vulnerable ethnic groups. The birth experiences are traumatic and maternal and infant outcomes can be impacted. 6 The National Perinatal Association recommends addressing the issues of perinatal health care access and disparities by first acknowledging their existence. ASTHO defines health equity as “The attainment of the highest level for all people.”1 While several barriers to health equity have been thoroughly described in the literature, raising awareness

Education of clinicians is of the highest priority in this process. Implicit bias and systemic racism impact the ability of clinicians to care for all families equally. Addressing bias and racism should be mandatory for all individuals who care for pregnant people and their families. Racial and ethnic diversity among clinicians must be increased. Involvement and engagement of vulnerable populations in connexions

research and policy making is of the highest priority in this process. Much of the problems now encountered by people of color results from a long history of exploitation, discrimination or disenfranchisement in research and policy making. Healthcare systems must make medical translation services for non-English speaking families a priority in their care model. Fulltime, 24/7 translation services must be developed that acknowledges all languages in the community and provides translators in the appropriate dialects. All written and social media materials must also be available in the languages of the community. Finally, access to health insurance plays an outsized role in the United States in determining one’s access to quality healthcare. Within the framework of our current healthcare landscape, NPA and its partners are dedicated to educating legislators, training providers to be public policy advocates and holding insurance companies accountable to the patients they serve to assure equitable delivery of services. The United States, for all its resources, should not have the among the highest rates of maternal and infant mortality amongst the 27 wealthiest countries in the world. We spend more money on the healthcare than any other country and continue to have higher rates of infant mortality than countries such as Cuba, Belarus, and Hungary, who have significantly smaller economies and resources. 1 The United States has the 5th highest preterm birthrate in

While the Affordable Care Act (ACA) made great strides in addressing this barrier by expanding healthcare coverage, there is still much work to be done. the world with 9.6% of live births being delivered before 37 weeks gestation.10 These statistics are stark reminders that disparities in health care and lack of access to perinatal and pediatric services can have profound detrimental effects on a country’s overall health outcomes, despite general economic success. The National Perinatal Association is dedicated to not only understanding these issues and identifying solutions, but also creating the kind of multidisciplinary programs and policies that will ultimately eliminate such disparities and improve access for pregnant people and their families throughout the United States. References 1. Association of State and Territorial Health Officials (ASTHO). Issue Brief: Disparities and inequities in maternal and infant health outcomes. 2012. www.astho.org. 2. Bryant AS, A, Caughey AB, Washington AE. Racial/ethnic disparities in obstetrical outcome and care: prevalence and determinants. Am J ObstetGynecol. 2010. 202 (4): 335-343. 3. The American College of Obstetricians and Gynecologists. Committee Opinion. Committee on

Health Care for Underserved Women. Health care disparities in rural women #56. Am J ObstetGynecol. 2014. 12 (3): 384-388. 4. The American College of Obstetricians and Gynecologists. Committee Opinion. Committee on Health Care for Underserved Women. Racial and ethnic disparities in obstetrics and gynecology. #649. Am J ObstetGynecol. 2015 December. 5. Sigurdson K, Morton C, Mitchell B, Profit J. Disparities in NICU quality of care: A qualitative study of family and clinician accounts. J Perinatology. 2018. Doi.rg/10.1038/541372-018-57-3. 6. Oparah JC, Anega H, Hudson D, Jones L. Osequera T. Battling over Birth: Black Women and the Maternal Health Care Crisis. 2018. Praeclarus Press. Black Women Birthing Justice. 7. Profit J, Gould JB, Bennett M, Goldstein BA, Draper D, Phibbs CS, Lee NC. Racial/ethnic disparities in NICU quality of care delivery. Pediatrics. 2017. Doi.org/10.1542/ peds.2017-0918. 8. Department of Health and Human Services. Results from the 2013 national survey on drug use and health: Summary of national findings. NSDUH Series H-48, HHS Publication No. (SMA) 14-4863. 2014; Retrieved: 5/13/2018. https://www. samhsa.gov/data/sites/default/files/ NSDUHresultsPDFWHTML2013/Web/ NSDUHresults2013.pdf. 9. Chasnoff IJ, Landress HJ, Barrett ME. The prevalence of illicit-drug or alcohol use during pregnancy and discrepancies in mandatory reporting in Pinellas County, Florida. The New England Journal of Medicine. 1990; 322(17):1202–1206. Doi 10.1056/ NEJM199004263221706.10.1056. 10. https://www.healthypeople.gov/ 2020/about/foundation-healthmeasures/Disparities https://www. surgeongeneral.gov/priorities/ prevention/strategy/elimination-ofhealth disparities.html.

Dr. Viveka Prakash-Zawisza, MD, MS, MBA, FACOG serves as a Medical Director at MassHealth where she develops and implements new policy solutions to the many challenges faced by the Medicaid population in Massachusetts, and is the clinical lead for initiatives addressing maternal and perinatal health. She also serves as the current President of the National Perinatal Association. Dr. Prakash-Zawisza is dedicated to addressing systemic inequities and disparities and creating an innovative healthcare system that promotes optimal well-being for all people. 16

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what's that in your bag?

Besides some of the obvious things, here is a glimpse at must-have items for your diaper bag {and spoiler alert...a few are specifically for you!}

Fever-Bugz Stick-On Fever Indicator - Easily monitor your child's temperature for up to 48 hours at a glance. You can even check it at night, while they’re sleeping, without waking them!

PBnJ baby Clip n Go - 2 Pack X-Large Stroller Organizer Hook Clip - these are perfect for using to hold your purse or shopping bags while pushing baby through the market or mall. It also keep your hands free for tending to baby or carrying your favorite iced drink!

Medi Frida the Accu-Dose Pacifier - a total game-changer for kids who hate taking medicine, but love their pacifier! Just place the correct dosage in the dropper and use the plunger to send the medicine in the side of the cheeks. No mess! No fuss!

4 5 6 7

Downy Dreft Pretreater Portable Stain Pen - this is as much for them as it is for you! Clean up small spills on clothes before they set in and stain! Honest Baby Diaper Rash Spray - soothe their sore bottoms, but keep your fingers squeaky clean (no more greasy mess on your fingers or under your nails!). Genius! iWALK 3350mAh Mini Portable Charger Power Bank - perfect for on-the-go when your phone just needs a little juice. It's also the size of a lipstick, so a major space saver in an already overcrowded bag!

Me4kidz Medipro All Purpose First Aid Kit with busy toddlers, you'll be glad you have sanitary wipes, disinfectant, and bandaids in this compact little kit.

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special feature

UC Davis lab develops fetal oximetry device to prevent unnecessary c-sections special editorial submitted by friends steward partner, uc davis 18

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Fetal hypoxia, a condition that occurs when the fetus is deprived of an adequate supply of oxygen, is one reason obstetricians may perform a Caesarean section (C-section). Currently, obstetricians use electronic fetal heart rate monitoring (EFM) during labor and delivery to assess fetal well-being. As of 2016, data published in Clinical Obstetrics & Gynaecology showed that 30% of babies delivered in hospitals in the U.S. are detected as potentially hypoxic, but 60% of those detections are false alarms that can lead to unnecessary C-sections. UC Davis electrical and computer engineering professor Soheil Ghiasi's lab has built a specialized device to measure a baby’s blood oxygen saturation levels non-invasively. It’s called a transabdominal fetal pulse oximeter (TFO.) A new father himself, Ghiasi says the birth of his young daughter inspired this research. The workis supported by grants from the National Science Foundation and the National Institutes of Health. Ghiasi expects this technology wil be adopted by many medical facilities worldwide. "From my observations, nurses and obstetricians are well-trained on how to use fetal monitoring devices, and this is something to which they can easily adapt,” Ghiasi said. “Placing TFO on the abdomen is similar to placing ultrasound transducers currently used for fetal monitoring

Begum Kasap, a Ph.D. student working on the project.

A transabdominal fetal pulse oximeter measures a baby's blood oxygen saturation levels non-invasively.

at hospitals. A friendly graphical user interface can provide easy access to fetal oxygen saturation numbers outputted by the TFO and help with the adaptation. Additionally, TFO is composed of off-the-shelf components and is relatively low-cost.” Testing accuracy in pregnant ewes The research team is currently testing the accuracy of the fetal oximeter in pregnant ewes, in collaboration with Diana L. Farmer, chair of the UC Davis Department of Surgery and an internationally renowned fetal and neonatal surgeon at UC Davis Health. The collaboration also includes Herman Hedriana and Aijun Wang of UC Davis Health; Weijian Yang, Naoki Saito, Andre Knoesen and Vivek Srinivasan at UC Davis; and M. Austin Johnson, previously at UC Davis Health and now at the University of Utah. "We have done 13 animal studies with various prototypes of the TFO device since 2019, thanks to all of these collaborators. Our latest animal study showed that our TFO can measure fetal oxygen saturation with about 10% mean absolute error," said

Accessing reference oxygen saturation values is necessary to characterize and calibrate any pulse oximetry system. To accomplish this, researchers can draw blood from sheep fetuses during the study to compare actual fetal blood oxygenation data with observations from the TFO technology. The procedure follows a strict protocol, approved by the UC Davis Institutional Animal Care and Use Committee, where the sheep are under anesthesia. Prenatal testing in humans The new oximeter was tested on a small group of humans in 2021 in collaboration with Herman Hedriana, director of MaternalFetal Medicine at UC Davis Health. Healthy near-term pregnant patients coming in for their non-stress test (NST) visits were enrolled in the study, which was conducted at UC Davis Medical Center. The evaluation of TFO for use in prenatal testing is an important step towards its integration into hospitals for fetal monitoring during labor and delivery. However, because researchers cannot draw blood as frequently from human fetuses, the performance of TFO in humans is evaluated using proxy metrics, such as fetal heart rate and maternal heart rate. "We had a mean absolute error of 6.3 beats per minute (bpm) for fetal heart rate with our technology and a mean absolute error of 1.3 maternal heartbeats per minute across three patients. We want an error of below 5 bpm for a clinical application, so we are working on this," Kasap said.

"More light gets absorbed while passing through the body of someone with a darker skin tone, so less light is reflected to the surface, making it harder to obtain observations," Kasap said. To correct this, they've made it possible to adjust the brightness of the LED light source. However, there's a safety-related upper limit on brightness to avoid the possibility that the LED in contact with someone's body will overheat. The researchers are developing another prototype that is less sensitive to 'noise' - other things the sensors pick up that have nothing to do with fetal blood oxygenation - which can work with lower levels of light. This year, Ghiasi, Kasap and their many collaborators will carry out further oximeter tests during labor and delivery in both animals and humans.

the center The UC Davis Fetal Care and Treatment Center is a comprehensive fetal care center, offering advanced imaging techniques, as well as minimally invasive and open fetal surgery. It is the second center in California, after UC San Francisco, to offer open fetal surgery and is the only center in inland Northern California.

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

The device has been tested on patients with darker skin tones, and it has proven less accurate than those with lighter skin. connexions

Delivering the best care when it matters the most Proud to offer: ■

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, plus a renowned spina bifida research program, you’ll always have an extraordinary team behind you with the Fetal Care and Treatment Center.

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Access to more than 2,500 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

fetalcare.ucdavis.edu 20

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recommended reading HOPE (Amidst the Stories I Told Myself), Candice Deleeuw - Candice graduated college, got married and became a new mom --- she was a go-getter with her life all planned out. When the unexpected death of her son sends everything into chaos, how does she survive what she cannot control? As Candice spills out her experience, she hopes readers who have experienced a similar loss are able to find their own HOPE (amidst the stories you tell yourself). Amazon / $7.74 {through a partnership with Candice's non-profit, Hope in Healing Hearts, we have copies available to help support grieving parents; email info@fetalhealthfoundation.org to receive a copy} Twin to Twin: From High-Risk Pregnancy to Happy Family, Crystal Duffy - Twin-to-Twin is one mother’s adventure from learning she is unexpectedly expecting twins, to learning they have a rare condition that threatens their very lives if medical treatment isn't immediately sought. While told from a pregnant perspective, this book also hales as an inspiration to all women, especially when considering the journey and fight through adversity. Amazon / $9.99+

It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand, Megan Devine - When we lose someone we love, it often shatters us like nothing else and turns our world on its head. “Grief is simply love in its most wild and painful form,” says Megan Devine. “It is a natural and sane response to loss.” Her book explores why our culture treats grief like a disease that must be cured and cured quickly, and why it's so much more feasible to build life alongside grief, rather than trying to 'get over it'. This book is both for those who are grieving, as well as those who wish to better help those along the process. Amazon / $9.69+ What No One Tells You: A Guide to Your Emotions from Pregnancy to Motherhood, Alexandra Sacks, MD and Catherine Birndorf, MD - When you're pregnant, you deal with a lot of changes to your body, but also within your mind. You constantly question 'is this normal?' and while unwarranted advice is likely always given, you never truly have peace that what you're dealing with is something that so many other moms also experience. Thirty years of combined experience allows two reproductive psychiatrists to formally shed light on women's pregnancy experiences and why it's all normal. Amazon / $9.59+ New and expectant moms can enter to win this beautiful book on bonding with your new baby, as well as a pack of milestone stickers to use within your baby book or journal for tracking all of those beautiful "firsts" in life. Email your name, address, and expected due date to info@fetalhealthfoundation.org for a chance to win! Deadline for entries and the drawing will be held May 20, 2022.

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superfoods to support women's health

It doesn't take a lot of research to find that most women do not take the best of care of themselves. There is always the job, the house, the children, the significant other, the fur babies...you name it, and I'm pretty sure it's somewhere on the list of things to-do before the day's end. While organization and time management are topics for another day, we are going to focus on eating and how to better fuel your body as a woman. This applies to most all women, in any age and stage of your life, so listen up! According to the CDC, only 9% to 12% of people eat enough fruits and vegetables. Women need certain foods to help boost immunity, improve muscle growth, for reproductive purposes, as preventatives for scary health problems, etc. If we are going to eat, let's make sure we are eating the things that are proven to be best for us. Legumes and beans are packed with protein and fiber, which give us much-needed energy and can lower the risk for heart disease. Edamame is full of fiber, healthy fats and compounds that mimic estrogen and may help control hot flashes during menopause. Black beans, typically eaten with Mexican dishes, are loaded with essential minerals like folate, magnesium and iron, magnesium being a mineral we all need for every cellular function in our bodies (but that we rarely get enough of).

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While many women reach for romaine and other lettuces when it comes to making and eating salads, kale and spinach deserve a closer look. Darker leafy greens include more disease-fighting antioxidants, so why not throw them in when we can? Kale is loaded with vitamin K, a vitamin known to work with calcium and vitamin D for strong and healthy bones. Spinach contains folate, which is important during pregnancy, as it supports your baby’s growth and development. Spinach has an extra perk, as it is tied to lowering a woman’s risk for dementia and colon cancer. Fruits are an easy area to pack in much-needed vitamins and nutrients. Papaya contains an antioxidant known as lycopene, which helps reduce cervical and breast cancer health risks for women, while also helping manage cholesterol and blood pressure. Berries are always a good bet in helping stablize blood sugar levels. Most berries like strawberries, raspberris and blueberries contain a lot of vitamin C, which helps to build collagen, the protein that women need to keep skin smooth and firm. Berries are also tied to good heart and brain health, keeping us sharp as we age. There are a number of vegetables that help pack a punch in the nutrition department. Cruciferous vegetables like broccoli, cauliflower and Brussels sprouts help fight against cancer. Unfortunately, these veggies sometimes get a bad rep, as you either love them or you hate them. Find recipes to incorporate them in your meals so that you'll actually give them a fighting chance! Here's a tip: if you find ways to eat and enjoy them, your kids may do the same.

Often forgotten, beets are red root vegetables that are a little on the sweet and tangy side. Drinking a glass of beet juice each day lowers your blood pressure, as published by a 2012 study in Nutrition journal. While it falls more in the spice and herb category, turmeric should become a staple in your pantry and is a healthy way to spice up your dishes. Typically found in yellow curry dishes, it is a member of the ginger family (another great spice to use). One of turmeric's nutrients that give it the yellow hue has long been used to help fight infection and speed the healing of wounds. Nuts and seeds are an easy snack to throw in throughout your day, as they are a healthy fat and are full of fiber, which helps keep you full for longer. Almonds particularly stand out against the others, as they are a great souce of antioxidants (helping to fight inflammation, aging and diseases like cancer). They also contain magnesium, vitamin E, and calcium, which helps prevent bone breaks and fractures. Lastly, quinoa is an ancient grain that is full of protein, providing lots of energy for your busy day! Quinoa contains all nine of the essential amino acids, which are the building blocks of protein. They make up our muscles, tendons, glands and organs. Our bodies don't naturally make them, so we need good sources to consume them.

fiber-filled quick foods: *nuts, but especially almonds *avocado *jicama (can often find this pre-sliced; great with guacamole)

*popcorn (as natural as possible, or with a little sea salt) *oat bran or oatmeal *sea salt, crispy chickpeas *hummus *fiber crispbread (can often find GF options for sensitivities) *raspberries + blueberries *chia seeds (add in smoothies, yogurt, cereals, and oatmeals) *fruit crisps

Women typically take on a lot of caretaker roles throughout their lives. Properly fueling and taking better care of themselves will help them live healthier and continue to do what they do best ---caring for everything and everyone around them. connexions

I was 32 weeks pregnant, and until that point, everything had been going absolutely perfectly. Every check up with the Obstetrician was going great! Baby was growing well, moving well, tests all came back good. One day, I was enjoying a Subway sandwich, when I felt like I had peed myself a bit; I was really embarrassed, so I ran into the bathroom to clean myself up, returned to my lunch, and it happened again. It got to the point where I couldn’t walk two feet without feeling like I was peeing. I had made the decision to go to the ER, and sure enough, it wasn’t urine. My water had been leaking. The nurses immediately took me to the maternity ward and had me hooked up for monitoring. The hope was to keep a close eye on baby and wait for him to decide it was time. I stayed in the hospital for a little over a week before my contractions started up. Within 4 hours of my first contraction, my son was born at 33 weeks on June 11, 2018 at 1am, weighing 4lbs 10oz. The doctors immediately took my son to the NICU to run tests. I didn’t get more than 5 minutes to see his face. I was exhausted, and when they cleared me to return to my room, I quickly fell asleep.

neonatal alloimmune thrombocytopenia: one family's journey by michelle thornton

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I was awakened about two hours later to a nurse from the NICU asking me to sign off on an emergency transfusion. I had no idea why or what for, I was half asleep. I signed the papers, and went back to sleep. The next morning, as early as I was able, I went into the NICU to visit my baby for the first time. That’s when I was told, my son had concerningly low platelets. The first tests they ran showed platelets were at 8,000. That morning, after the platelet transfusions I had signed off on in the middle of the night, they ran tests again and his platelets had dropped even lower to 5,000. The nurses and doctors had no idea what was going on. They prepared me for the worst, and I honestly thought I would lose my son. I will never forget the nurse’s name, Evelyn, who became my saving grace. She had mentioned to my husband and I that she had read something once in her free time about a condition called neonatal alloimmune thrombocytopenia, or NAIT. The doctors in the NICU had never heard of it and cautioned her about getting our hopes up. She quickly started in on more research, using the NAIT Babies

website, and found out how and where to have my husband, Jason and I tested. We had our blood drawn and sent to Seattle to be tested as soon as possible. It took a day or two to come back, but it felt like weeks. Sure enough, results came back showing that we had not only one incompatibility with our platelet-specific antigens, but two; HPA 3 and HPA 5. Before we had even received our diagnosis, the doctors went ahead and started IVIG treatments for my son, not knowing what else might work. After the diagnosis, they increased his dose and we slowly started to see his platelets rise, only to fall again. Rise, then fall again. It was discouraging, but after about 14 days, my son’s levels finally started to stabilize. He was a miracle baby. After all of the treatment and ups and downs, we met with our Obstetrician for a followup appointment. We explained everything we learned and experienced in the NICU. She, of course, had also never heard of NAIT, and had no idea how to move forward. We were essentially told that if and when I got pregnant again, she would refer me to a specialist, and that was the end of the conversation. I never read anything more about NAIT. I didn’t think I needed to concern myself with it, unless I

ended up pregnant again. Fast forward almost two years, and my husband and I were surprised to find we were expecting again. I immediately went into a panic, remembering everything I had gone through with my son. I started reading more about NAIT on the NAIT Babies website. I read stories from all the moms around the world. I joined the Facebook group, and I soon found out what treatments for my next pregnancy would entail. I was in my very first year of teaching at a brand new school. To learn about weekly infusion treatments that would require me to drive 300 miles to the nearest infusion center was very overwhelming. However, we started the process. Now, I’m 29 weeks along, I’ve been receiving IVIG treatments since 20 weeks, and things seem to be moving along. My baby girl is growing well, and monthly ultrasounds have shown no sign of bleeding so far. For now, we anxiously wait for our baby to make her appearance. If not for the fantastic support I receive from all the moms and families through NAIT Babies, I would not be able to handle everything that’s been thrown at me this year. I am forever grateful.

about nait babies... Naitbabies is a small Charitable Incorporated Organization registered in the UK in 2011 and run by families who have a rare, but serious platelet condition called Fetal and neonatal alloimmune thrombocytopenia (FNAIT). FNAIT results from incompatibility between parents for platelet-specific antigens, which may affect the fetal platelet count. It is the most common cause of severely low platelets in an otherwise healthy fetus/ neonate. FNAIT may cause babies to bleed into their brain (ICH) and/or other major organs, and may result in death or lifelong disabilities. NAIT Babies aims to be a voice for parents and children impacted by a diagnosis, and to see prenatal screening of all pregnant women for the FNAIT platelet disorder. To learn more about this organization or disorder, visit naitbabies.org.

baby boy Thornton receiving an infusion after birth; the Thornton family connexions

photo courtesy of sanjasy, by pixabay

B c-section vs. vaginal delivery: which is right for you?

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Becoming pregnant for the first time (or the second, third or fourth), is a big moment in anyone's life. Your mind and body go through so many changes throughout the nine months of growing and developing your baby or babies, and deciding on how you would like to deliver is no less of a monumental moment in your life. However, there are so many factors to consider in making such an important decision. Here are just a few things to think about before talking with your care team about your delivery day and birth plans. Circumstantial evidence If you are pregnant with multiples (twins, triplets or more), your doctor may advise you to deliver via Cesarean-section, or C-section, to prevent any unforeseen problems with any of the babies or you during delivery. If you had any pregnancy complications like gestational diabetes, are dealing with a possible infection or other issues like preeclampsia about which your healthcare provider is concerned, a C-section will likely be your recommended option. It is important to note that there are risks of infection, blood clotting, or even hemorrhaging with either option, so do your research and know what could happen. If you are adamant about wanting to give vaginal delivery a chance, talk with your provider about the pros and cons, and take their medical advice seriously when making your final decision.

Timing is everything When it comes to the two delivery options, an elective C-section typically takes around 45 minutes, as long as there is no emergency that arises during delivery. A vaginal birth can take anywhere from minutes to hours, depending on how quickly labor progresses and you begin to push. A C-section can be scheduled in advance, so if planning is your specialty and you have things around which you want to schedule the birth ofyour baby, you might want to consider this convenience. Unless you have been scheduled for an induction, where medication and other practices might help move your labor along, vaginal births typically go at their own pace, allowing your body and the baby to do exactly what it is designed to do. If labor is progressing too slowly, the baby seems stuck or becomes jeopardized at any point during the process, your healthcare provider will likely perform an emergency C-section to ensure the safety of your baby. Just be prepared for how that may look a little differently than what you anticipated. If at first you don't succeed... If at all interested in a vaginal delivery, many women try to deliver vaginally during their first pregnancy. Once you have had a C-section, most doctors will advise you to have C-sections for each pregnancy thereafter. In some cases, when there are no medical complications and it seems possible, women try for what is known as a VBAC, or vaginal birth after cesarean. In these cases, everything needs to line up --- the baby needs to be transverse or head down, and all vitals on both mom and baby should be optimal. There's no shame in pain Unless you have an amazing epidural and an easy time during

vaginal delivery, you will likely have some mild to moderate discomfort with the stronger contractions, during the pushing, and even possible tearing of the perineum in the pushing process. However, the same can be said for a C-section. While you may or may not be put to sleep, you will be given anesthesia to get you through the surgery. Once it wears off, you will feel the pain from the skin and nerves around the incision area. It may be painful at first and then become itchy as the scar tissue begins to heal. In either case, your doctor can prescribe pain medications to help you adjust through the first few days. Just have patience with yourself and your recovery, as your body has just undergone a major physical alteration in the labor and delivery process. A wrinkle in time Women who opt for vaginal births often have their baby given to them directly after birth and then again after they are cleaned up and routine tests are performed. If mom chooses to breastfeed, that can happen right away or as soon as she is ready. Regardless, skin-to-skin bonding is pretty immediate. On the other

hand, with a C-section, there is the anesthesia and time in the recovery room to consider. For obvious reasons, the bonding and breastfeeding may be a bit more delayed, so keep this in mind if you prefer immediate bonding. Up, up and away! Recovery is definitely a big factor to consider before making a final decision into your delivery. Routine vaginal births require less time in the hospital (less than 2 days), and mom is typically able to be moving about the same day as delivering. A C-section requires more time in the hospital, more time healing from the incision, and often comes with restrictions like limited driving, etc. While most moms who deliver vaginally heal pretty quickly on their own, moms who opt for C-sections may require the full recommended six weeks of recovery post-childbirth. Just follow your provider's instructions until cleared to resume activities. Regardless which method you choose for delivery, the end result is holding your healthy baby in your arms. Advocate for what you want, as well as what you think is best for you and baby. connexions

special feature

the story of addy and lily birth and separation of conjoined twins

special editorial submitted by friends steward partner, children's hospital of philadelphia 28

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When an ultrasound early in the second trimester showed they were expecting conjoined twins, Dom and Maggie began evaluating hospitals, willing to travel as far as necessary from their home in Chicago for care. After they met with the team at Children’s Hospital of Philadelphia, their decision was made. On October 13, 2021, after nearly a year in intensive care at Children’s Hospital of Philadelphia (CHOP), 10-monthold conjoined twins Addison (Addy) and Lilianna (Lily) were separated by CHOP surgeons. What caused their connection is a mystery. What led to their successful separation is a medical marvel that would not have been possible were it not for expert prenatal diagnosis, seamless pregnancy management, successful delivery and the dedication of countless medical professionals. Where the journey began In July of 2020, eager parents-to-be Dom and Maggie purchased their first home in the suburbs of Chicago in anticipation of expanding to a family of three. A month later, they learned not only that they were expecting twins, but that the girls were conjoined. It was a thoraco-

answer of if a safe delivery and separation was possible.” The evaluation found that while the girls were joined at the chest wall, diaphragm and liver, they each had separate, healthy hearts. And their shared liver vasculature and biliary drainage was favorable to divide between them. This meant they were excellent candidates for separation surgery. “Children’s Hospital of Philadelphia gave us the confidence to say we can do this, and these little girls are going to be OK,” says Dom.

An evaluation at Children’s Hospital of Philadelphia found that while Addy and Lily were joined at the chest wall, diaphragm and liver, they each had separate, healthy hearts. omphalopagus connection, which means the girls were joined at the chest and abdomen. Conjoined twins are very rare, occurring roughly once in every 50,000 births. Potential complications depend on where the twins are joined, which organs or other parts of the body they share, and the expertise and experience of the healthcare team. The maternal-fetal medicine (MFM) specialist in Chicago who made the initial diagnosis knew that in order for the twins to defy the odds and survive, they would need intensive care from a highly experienced team before, during and after birth.

since 1957, the most of any hospital in the country. The MFM called CHOP and spoke to Julie S. Moldenhauer, MD, Director of Obstetrical Services at the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT). When the MFM explained what he saw on the ultrasound, Dr. Moldenhauer enlisted the help of the CFDT’s fetal therapy nurse coordinators to schedule the family for a comprehensive evaluation at CHOP. At their first appointment, Maggie underwent extensive prenatal imaging to establish a clear picture of how the twins were connected to confirm that it was possible to separate them. The couple met with Dr. Moldenhauer and Attending Pediatric and Fetal Surgeon, Holly L. Hedrick, MD, who would separate the girls after birth, as well as a genetic counselor, radiologist, neonatologist, psychologist, and fetal therapy coordinator.

Children’s Hospital of Philadelphia (CHOP) is one of only a few “They did a five-hour ultrasound, hospitals in the country with looking at every single fingernail experience delivering and and toenail,” recalls Maggie, in awe separating conjoined twins. More of the care team’s thoroughness. special editorial submitted by friends steward partner thancenter 28 pairs of conjoined twins “They did everything they could to for fetal diagnosis and treatment at children's havehospital been separated at CHOP make sure they gave us the right of philadelphia

Co-managing the pregnancy From that point until the family relocated to Philadelphia at 30 weeks’ gestation, Dr. Moldenhauer and the MFM in Chicago worked together to co-manage Maggie’s prenatal care. Conjoined twin pregnancies have an increased risk of serious complications. Conjoined twins have a high risk of prematurity and could be stillborn or die shortly after birth. Severe health issues — such as trouble breathing or heart problems — can occur immediately after birth. During regular prenatal follow-up appointments, Dr. Moldenhauer and the MFM team at CHOP along with the obstetrical care team that includes obstetricians, midwives and nurse practitioners closely monitored the twins for any signs of complications. They performed biophysical profiles, an ultrasound method to ensure fetal well-being and that the twins weren’t in distress, measured the growth of the babies to ensure they were both gaining weight, and monitored amniotic fluid levels to ensure the twins weren’t developing polyhydramnios. The Center’s Psychosocial Services Team offered Maggie and Dom counseling and support services to help them cope with any connexions

mental and emotional challenges they faced during their care. The goal was to get Maggie to 34 weeks’ gestation. As the due date approached, Maggie and Dom had frequent prenatal consultations with the High-Risk Obstetrical Team, as well as the Neonatal Surgery Team that would offer immediate delivery room management of the twins. A high-risk delivery and separation surgery Conjoined twins require surgical delivery by cesarean section (C-section) due to their anatomy. The High-Risk Obstetrical Team and Neonatal Surgery Team worked together to plan every detail of the delivery, from which type of uterine incision to make, to the safest way to position the twins during the delivery, to the logistics of attending to their medical needs immediately after birth. The team did a simulated walk-through of the delivery, rehearsing every detail. Lily and Addy were born on Nov. 18, 2020, in CHOP’s Garbose Family Special Delivery Unit (SDU), the world’s first birthing facility within a freestanding children’s hospital designed just for pregnant women carrying babies with known birth defects. The MFM team was strategic in their approach to the uterine incision, delivering the girls through a low transverse incision rather than a vertical incision. This ensures that Maggie can attempt a trial of labor after cesarean (TOLAC) and deliver vaginally in the event of a 30

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After nearly a year in intensive care, Addy and Lily were separated by CHOP surgeons and, a few weeks later, were discharged home to Chicago just in time for Christmas. subsequent pregnancy. The twins spent four months in CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) where they received care for breathing and feeding issues resulting from their shared diaphragm and chest wall. They spent six months in the Pediatric Intensive Care Unit growing strong enough for their separation surgery.

Center for Fetal Diagnosis + Treatment at Children’s Hospital of Philadelphia

Following the 10-hour separation surgery, the girls spent seven more weeks in CHOP’s PICU and did amazingly well. In true storybook fashion, they were discharged home to Chicago just in time for Christmas.

An internationally recognized leader in fetal diagnosis, fetal surgery and fetal care.

The family will never forget their journey at CHOP and the many overlapping teams that provided the highly specialized care their girls needed. “I can’t thank the team at CHOP enough for their care, focus, experience and determination,” says Maggie. “We are just so in awe of what they've accomplished.”

Support for mom and baby, every step of the way. 800-468-8376 fetalsurgery.chop.edu

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special feature

advocacy from anguish: bethany weathersby’s story How a mother’s struggle with a rare condition, fetomaternal alloimmunization, drove her to advocate for proper care in her future pregnancies and for other mothers in need.

special editorial submitted by champion steward partner, janssen 32

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Bethany Weathersby had two routine pregnancies and two healthy children, Liam and Asher. She and her husband were looking forward to growing their family, however, just nine weeks into her third pregnancy, she was diagnosed with fetomaternal alloimmunization – a sensitization to foreign antigens which stimulates the production of maternal antibodies. In Bethany’s case, it was exposure to a rare blood type during her second pregnancy that caused her immune system to trigger her antibodies to cross through the placenta and attack her fetus’s red blood cells. By the time her unborn baby, who she and her husband had named Lucy, was treated with an intrauterine blood transfusion, Lucy was already severely anemic as a result of hemolytic disease of the fetus and newborn (HDFN). With HDFN and a lack of monitoring, Lucy did not survive. Fetal Health Foundation Champion Steward Partner Janssen Pharmaceutical Companies of Johnson & Johnson spoke with Bethany about this heartbreaking experience and how it set her on a journey to find specialized medical care so she could successfully carry another child and she and her husband could complete the family they had always wanted. She then made it her mission to ensure that other mothers diagnosed with maternal alloimmunization had education and knowledge about the risks of the disease and knew the steps for proper medical care and treatment, so that their babies could survive HDFN should it arise throughout their pregnancies.

Tell us about your diagnosis with fetomaternal alloimmunization. How did learn you have it? Fetomaternal alloimmunization was discovered during a routine first trimester blood test nine weeks into my third pregnancy. My doctor told me that I had anti-Kell antibodies in my blood. Kell is a rare blood type inherited from paternal genes.(1) My husband carries the Kell antigen, which was passed on to my second son. Though I had a normal pregnancy and he was born healthy, my doctor explained that my immune system had developed anti-Kell antibodies during the labor and delivery process. Incompatible blood types between mothers and babies can lead to hemolytic disease of the fetus and newborn (HDFN).(2) Though HDFN would not affect my health, my body’s immune response was extremely risky for my third baby. If Lucy had this blood type, my antibodies would attack and destroy her red blood cells and she could become anemic and very sick.(2) I went home and poured myself into research, but I found very little information online, apart from a couple of archived discussion groups among mothers.

bethany's family of seven

What followed your diagnosis with fetomaternal alloimmunization? I found out that I had an extremely high antibody titer (level) and was referred to a maternal fetal medicine practice where a doctor advised that a fetal middle cerebral arterial (MCA) Doppler ultrasound would assess how quickly blood flows through the middle cerebral artery of my baby’s brain in utero. (3) If her blood was flowing too fast through her brain, it would indicate anemia.(3) The doctor said the MCA would be done at week 22 of my pregnancy. However, I had read that fetal anemia can happen much earlier than that. I asked my doctors to consider proactive monitoring and treatments such as plasmapheresis, IVIG and early MCA scans but they insisted that they weren’t necessary. At this point, I felt anxious and afraid of what was happening. I didn’t have experience in advocating for medical care, but as a mother you’ll do anything for your children, so I pushed to get the MCA scans sooner. At my 18-week appointment, I asked my doctor again to please monitor my baby for fetal anemia and this time when they refused, I told the doctor I wasn’t leaving the office until I had the MCA scan. They finally agreed to do the scan which confirmed that Lucy was severely anemic and now showed signs of fetal hydrops as a result of the untreated anemia. How was your baby treated for HDFN? The day after the MCA ultrasound, my doctors conducted an intrauterine blood transfusion (IUT), a procedure considered relatively safe, though it can carry

some complications.(4) IUTs come with higher risks when they are performed at early gestations or on a baby who shows signs of fetal hydrops.

A week later, I had another MCA ultrasound that showed Lucy was even more anemic and now had heart damage. The next day as the doctors were preparing to attempt a second IUT, we watched on the ultrasound as Lucy’s heartbeat slowed down, then eventually stopped. We were devastated.

We were further brokenhearted to learn that fetomaternal alloimmunization usually worsens with each pregnancy, putting all of our future babies at risk unless they had my blood type. My husband and I had dreamed of having a big family. It was a very dark time for us. You didn’t give up. Tell us about how your family has since grown. I couldn’t give up hope. We had this deep need for more children. I felt that with the right doctors and the right treatments, we could have the big family we had always wanted. Through my online research, I found an expert in HDFN, Dr. Ken Moise, who taught me so much about the disease. My husband and I decided to try again even though it was risky. connexions

I got pregnant again: another daughter with the same Kell blood type as my husband. We named her Nora. We relocated to a different state to be treated by Dr. Moise who provided the best possible monitoring and treatments. I had early MCA scans, plasmapheresis and IVIG treatments, which delayed the need for life-saving blood transfusions until 24 weeks. After receiving five IUTs, Nora was born healthy with no signs of anemia. Nora is now six years old. 34

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Throughout the process, Dr. Moise treated her as if she was his own child. It gave me so much hope and encouraged us to try again. I went on to have two more children, both boys, who were Kell-positive. They, too, were born healthy as a result of receiving proper care early on in my pregnancies. It’s hard to believe that in spite of everything with which we were challenged, we now have five living children. We never gave up hope for a big family. How did the despair of losing Lucy and your subsequent delivery of healthy babies lead you to helping others? After the loss of Lucy, I started a blog to chronicle my grief and to attempt to explain what happened to loved ones who didn’t fully understand. This led to comments and questions from women all over the world who couldn’t get basic information and the care they needed for HDFN. So many babies with HDFN don’t have a chance without the proper care, particularly those in developing countries who cannot access treatment. This was very eyeopening for me. I saw a need to educate mothers on fetomaternal alloimmunization and HDFN, and felt that with my experience, I could provide encouragement to others. I started the Allo Hope Foundation in 2019, advocating to help women with fetomaternal alloimmunization receive proper prenatal care. Alloimmunization and HDFN do not have to be a death sentence for babies. There is hope for alloimmunized women who want to grow their families. What are you looking forward to through your work with the Allo Hope Foundation?

In addition to providing patient support, education and advocacy, the Allo Hope Foundation also works to bring attention to promising research. I’m really encouraged by the research being done among women whose babies could be at risk of developing HDFN. It gives me hope that many more mothers with fetomaternal alloimmunization have a chance at delivering healthy babies. Learn more about Janssen’s HDFN clinical trial at https:// globaltrialfinder.janssen.com/trial/ CR108980 or you can find more information on Bethany's work with the Allo Hope Foundation at allohopefoundation.org. References: 1. Hall V, Avulakunta ID. Hemolytic Diseases Of The Newborn. [Updated 2021 Aug 31]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2021 Jan-. Available from: https://www.ncbi. nlm.nih.gov/books/NBK557423/ 2. MedlinePlus [Internet]. Bethesda (MD): National Library of Medicine (US); [updated 2021 Oct 8]. Hemolytic disease of the newborn; [reviewed 2019 Sept 29]. Available from: https://medlineplus.gov/ency/ article/001298.htm 3. Brennand J. Middle cerebral artery Doppler. Australas J Ultrasound Med. 2009;12(3):3538. doi:10.1002/j.2205-0140.2009. tb00058.x. https://www.ncbi.nlm.nih. gov/pmc/articles/PMC5024842/ 4. Lindenburg IT, van Kamp IL, Oepkes D. Intrauterine blood transfusion: current indications and associated risks. Fetal Diagn Ther. 2014;36(4):263-71. doi: 10.1159/000362812. Epub 2014 Jun 5. PMID: 24903741. https://www. karger.com/Article/Fulltext/362812#

Delivering personalized, expert care for complex fetal diagnoses and pregnancies.

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creative tips for sharing the news 36

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A new pregnancy brings about joy and excitement for 'what will be'. We get caught up in the first months of surviving the nausea, fatigue and early changes to our bodies, to finally feeling like we are in our groove and getting excited about learning if it will be a boy or a girl. After all, that is normally the first question people ask after learning you are expecting. From giving birth at home and not knowing what you would have until you delivered, to elaborate gender reveal parties, we have come a long way in sharing with the world news of our little bundle of joy! If you're looking for ideas on how to reveal your baby's gender, the digital world (or at least, social media) is your microphone right now. If you are saddling the fence on keeping the news a little closer to home, that is okay and you can still have fun

Boy or Girl? Some of the more common ways to find out the gender include cake cutting, where the ultrasound technician places your images inside a sealed envelope to be delivered to your cake baker, who will then tint the inside icing pink or blue, depending on gender so that it is revealed once cut. You can also use colored balloons escaping a closed box, or even colored powders exploding from smoke cannons. A homemade baseball filled with the color that explodes when the bat makes contact (if mom or dad are into baseball), powder placed within the tailpipe of a motorcycle if that's part of your hobby, or even from confetti that flies once a balloon is popped, or silly string canisters that are covered in white paper to keep the secret until they are sprayed. Some more unique ways to share the news include dying the fur baby or using a bowtie or collar in the color representing the gender and having it (or them) pop out of a box (with holes for breathing, of course). You can order scratch off cards and even mail these as a great way for loved ones who live further away to participate. You could also have the "keeper" of the gender make a playlist to share with you and your loved ones with songs specific to the gender like "Let's Hear it for the Boy" "Bad Boy", or "Girls Just Want to Have Fun", "My Girl", and so on. It's Twins! Becoming pregnant with multiples

brings its own surprise, but there are some really clever ways you can announce the pregnancy. Of course, learning of the genders with two or more can prove a little more difficult, but you can still have fun making the general announcement. Using onesies with ultrasounds of each baby and a letterboard claiming "double trouble" have been done again and again, so why not be a little more creative? Use small balloons as photo props to spell out "Oh, Babies!" with the ultrasound image. Have onesies made in the theme of Thing 1 and Thing 2 or obvious other pairs like ketchup and mustard, PB&J. If it is summertime, use a double scoop of ice cream with your ultrasound as a way to spill the beans. If you are a baker or like to cook, use two rolls or other pastries to represent two "buns in the oven" as part of your announcement. Getting Big Siblings in on the Action If you already have children, they can be fun to include as part of the reveal (if they are interested and willing to cooperate...of course, sometimes the failed attempts are cuter than the plan

photos courtesy of barbara ribeiro & tima miroshnichenko, by pexels, & christian bowen, by unsplash

with that, too! And at least we are no longer limited to announcing our news to those we are closest via Zoom (of course, unless you want to do so!). Here are a few ideas to spark your imagination.

actually succeeding). If you have several older kids who will be big siblings, let them each hold a letter balloon to spell out "BABY". Family t-shirts tailored to each siblings birth order or personality can be a lot of fun, too. If you already have a boy and a girl, the new baby will be a tie breaker. Take advantage and be extra clever with your news. If the new baby is a surprise and makes #4, #5 or more, the announcement and the chaos that naturally can ensure is even more hilarious, so just have fun with it! Regardless of what the gender, just revel in the fun and excitement of this beautiful part of life, knowing that your little one is loved and cherished even before they have made their big arrival. connexions

special feature

Oregon Health & Science University expands fetal care program Pacific Northwest families can now receive advanced prenatal surgical intervention close to home

special editorial submitted by hope steward partner, OHSU Doernbecher Fetal Therapy Program 38

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Oregon Health & Science University (OHSU) has expanded its fetal program to become one of the most comprehensive fetal care centers in the Pacific Northwest. Starting with twin-twin transfusion syndrome (TTTS) laser surgery, the expansion makes OHSU’s Fetal Therapy Program one of only five programs nationally to provide medical and surgical interventions for high-risk pregnancies and neonates all under one roof. With this growth, families from Oregon and neighboring states can soon receive critical care at a dedicated center, close to home. Integrated care, one location In collaboration with OHSU’s Center for Women’s Health, the fetal care program provides services through OHSU Doernbecher Children’s Hospital. Doernbecher is nationally recognized by U.S. News and World Report as a top-ranked children’s hospital in five pediatric specialties, including newborn care. It consistently ranks as Oregon’s top children’s hospital year over year, and is home to the region’s largest team specializing in complex fetal conditions. By providing the full-spectrum of care in one location, patients have access to a complete array of hospital services – such as genetic counseling, imaging, surgery, and neonatal care – without the complications of communicating between providers or traveling to different clinics or hospitals. This integrated model simplifies logistics, eliminates the need for emergency

transport, and allows pregnant patients to deliver and recover onsite while babies receive care. An experienced team The unmatched team at OHSU includes maternal fetal medicine specialists, pediatric cardiologists, radiologists, neonatologists, pediatric subspecialists, and fetal surgeons, resulting in unparalleled care. Together, these providers have historically seen approximately 400 pregnant women per year, treating conditions such as abdominal wall defects, tumors and other masses, and cleft palates.

tube defect repairs, congenital diaphragmatic hernia, and twintwin transfusion syndrome. After their fellowship trainings in highvolume centers, both surgeons came to grow the OHSU program and to answer the need for fetal surgery care in the region and beyond Their paths are complimentary. While specialists in either maternal-fetal medicine or pediatric surgery can pursue advanced training in fetal surgery, bringing in both perspectives is an asset to the OHSU program.

Two fetal surgeons bring their own unique specialties to the program, providing expertise to both patients – mother and fetus – simultaneously.

“We have all the right components, the right team,” says Dr. Sun, “It becomes a more comprehensive and complete treatment plan for the patient.”

Andrew Chon, M.D., is a maternalfetal medicine specialist. He completed his fellowships in Maternal-Fetal Medicine and Fetal Surgery at the University of Southern California in Los Angeles. Dr. Chon specializes in multiple gestations, prevention of premature births, and minimally invasive procedures.

Guided, centralized care There are many moving parts to a fetal diagnosis, surgery, and recovery. Families in the fetal care program at OHSU can rely on a dedicated nurse coordinator to guide them through decisions, expectations, and procedures at each step of the process. Because of the different specialists involved in care, the fetal nurse coordinator is critical to ensuring providers meet patients’ needs in an organized and timely manner. Patients take comfort in knowing they always have someone to turn to with questions.

Raphael Sun, M.D., is a pediatric surgeon and an expert in prenatal anomalies. He completed his pediatric surgery fellowship at Texas Children’s Hospital in Houston and received training in fetal surgery at Texas Children’s Fetal Center. Dr. Chon and Dr. Sun each serve as assistant professors in their respective disciplines, and have advanced training in fetal procedures such as neural

An initial visit may begin with a thorough review of records, a discussion of recommended diagnostic and genetic testing, and potential imaging studies such as ultrasound, echocardiography, and MRI. All patients meet with a maternal fetal medicine provider at every visit, Dr. Rachel Pilliod or Dr. Stephanie Dukhovny. In general, patients can expect all their initial tests and doctor visits to occur in one day. They also have the option of meeting with a dedicated genetic counselor and social worker. After a review of findings, the team determines an

“The expansion of OHSU’s fetal therapy program means that parents in Oregon and the Pacific Northwest will have access to the broadest, and most advanced, range of maternal and fetal care right in their backyards,” says Stephanie Dukhovny, M.D., associate professor of obstetrics and gynecology in the OHSU School of Medicine, board-certified Maternal Fetal Medicine/ Geneticist, and director of the Fetal Therapy Program.

individualized care plan with the patient. The fetal nurse coordinator assists families with all aspects of this process, and provides compassionate care through the fetal therapy journey and beyond. Filling a void The long-standing fetal therapy program at OHSU has consistently provided the most comprehensive care from Seattle to San Francisco for families with complex prenatal conditions. Doernbecher’s awardwinning Level IV Neonatal Intensive connexions

“I find the courage and strength of our patients to be inspiring,” says Rose Stockman, fetal nurse coordinator, “I enjoy educating families and preparing them for the next steps of their journey. Care coordination opens pathways of establishing trust, supporting choice and forming strong relationships.” Care Unit (NICU) has served babies since 1968. With the expansion of the team and conditions treated at OHSU, Oregonians and regional families can now get the highest level of fetal surgery interventions at a top-tier academic, research, and health care institution. “The expansion of OHSU’s fetal therapy program means that parents in Oregon and the Pacific Northwest will have access to the broadest, and most advanced, range of maternal and fetal care right in their backyards,” says Stephanie Dukhovny, M.D., associate professor of obstetrics and gynecology in the OHSU School of Medicine, board-certified Maternal Fetal Medicine/Geneticist, and director of the Fetal Therapy Program. “This allows them to stay closer to home, and their local support systems, which are essential to both their physical and emotional well-being.” The fetal care team at OHSU is here to provide the best genetic testing, imaging, counseling and treatment to families navigating a fetal condition. Learn more about fetal surgery and intervention at OHSU by visiting ohsu. edu/fetal-therapy.

about OHSU

Located in Portland, Oregon, OHSU Doernbecher’s Fetal Therapy Program is the only place in the Pacific Northwest where high-risk pregnant people and babies can stay together for the full spectrum of fetal care -- from diagnosis, to delivery, recovery, and beyond. OHSU Doernbecher Children’s Hospital is home to the state’s only Level IV NICU, and is nationally recognized as a top-ranked children’s hospital in 5 pediatric specialties. Discover the Fetal Therapy Program at OHSU ohsu.edu/fetal-therapy 40

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pregnancy + the road: staying safe + comfortable in the car by lena borrelli

It can be really hard to stay off the roads. When you are pregnant, the need to drive becomes even more pressing as preparations for your upcoming bundle of joy take center stage. There are doctor appointments, shopping, moving, and coordinating that must all be done within the short window of pregnancy. However, these are unprecedented times, and coronavirus has presented new challenges for the average pregnancy that did not exist before. There is still a lot to do to prepare for a baby, but now there is the added burden of the ever-present concerns about illness. With the coronavirus vaccine rollout becoming more widespread,

new mothers everywhere are beginning to breathe a collective sigh of relief. Many have begun to emerge from their homes to catch up on all that COVID has thrown to the wayside. Of course, it is not just pregnant women who are beginning to leave their homes, and traffic is starting to return to prepandemic levels everywhere. Regardless of whether you are driving cross-country to finally visit family or just down the street to the store, there are some things that pregnant women can do to stay safe on increasingly busy roads. Is it safe to travel while pregnant?

Even before COVID, many women

wonder if they can safely travel when pregnant, but it all depends. Everyone’s medical history is different, and if you have a highrisk pregnancy, your doctor may recommend that you avoid travel as much as possible. Before you hit the road, you should consult your medical professional for the best advice. Common Concerns

There are some common health concerns to consider when traveling while pregnant. COVID Prevention

Although the COVID infection rate has significantly decreased, the possibility of contracting or transmitting the virus is a valid concern for expecting mothers. If connexions

you’re traveling to see friends and family, ask them to take a rapid COVID test as a precautionary measure. If you’re driving to one of the (seemingly) endless doctor’s appointments, frequently disinfect your wheel, car door and other parts of your car. Zika and Malaria

A simple mosquito bite could lead to possible hospitalization and birth defects. If you are traveling to an area with a risk of zika or malaria, you should immediately contact your doctor about your plans and ask them for tips on mitigating the risk. Food and Water

Before you travel, be sure to pack enough food and water to tide you over for the trip. Pregnant women are typically more at risk for dehydration or food poisoning complications, so it might be better to be prepared with food and water from familiar sources. Car safety checklist

Another easy way to help ensure the safety of you and your unborn baby while traveling pregnant is to keep your car road-ready. Whether you are a passenger or a driver, consider reviewing a car safety checklist before you hit the road. You can do some easy things to keep your car maintained and for a safe and seamless ride. Vehicle maintenance

Maintaining your car does not have to be a complicated or expensive venture. There are several ways to keep your vehicle in top shape from home. When preparing for travel, be sure to check these items on your vehicle. Tire pressure: Proper tire pressure not only ensures a smoother ride, but your car will also respond better to steering, and it can extend the overall life of your tires and vehicle. To check your 42

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More extended travel will require a more indepth health plan. If you plan on extended travel, work with your doctor to develop a game plan that ensures your continued prenatal health while you are gone. Depending on the length of your stay, you may need to find a temporary doctor in your new locale.

tire pressure, all you need is a tire pressure gauge, which can be purchased at an auto store or found at your local gas station. If you do not have an air compressor to fill the tires, some gas stations offer free air. Power steering fluid: Power steering fluid is critical to ensure easier steering by keeping the steering components fully lubricated and protected against corrosion. Consult your manufacturer’s manual to see what kind of lubrication is necessary for your specific vehicle. Brakes: Your brakes are a critical part of everyday driving, so it is only natural for them to wear down over time. Your car manual will advise on exact maintenance schedules, but the time between maintenance depends on how much you drive and whether you live in a high-traffic or rural area. It is a good idea to take your car

to a mechanic to have the brakes inspected regularly. Depending on your car, you may even be able to do a visual inspection of your brake pads at home. Air filter: The air filter keeps the engine clean, working like a sieve to keep out dirt and harmful contaminants. Most manufacturers recommend changing your air filter every 15,000 to 30,000 miles, but it is best to consult your car’s manual. Lights: Your car’s lights and signals are your primary form of communication with other drivers on the road, letting others know when you are turning, stopping or reversing. Your hazard lights are also important, expressing distress if you run into trouble, so regularly check your vehicle’s exterior lights to ensure all are in working order. These types of lights can easily be replaced at home on many models. Antifreeze and/or coolant: Antifreeze, also known as coolant, helps your vehicle from overheating and also maintains proper temperatures even during extreme weather. When you change your oil, be sure to also check antifreeze and coolant levels to ensure your engine is kept in top working order. Wheel alignment: Proper wheel alignment can save you money on gas, prevent unnecessary wear and tear and allow for a smoother, safer ride. You should get a wheel alignment every two to three years, depending on how much you drive. When you consult your vehicle’s manual, be sure to check whether there are any additional maintenance measures that you should take before you hit the road. Health safety checklist

Some items are essential to keep on hand during travel to help ensure the health, safety and comfort of

you and your baby while away. Nutritional snacks: Keep some easy-to-eat, non-perishable snacks that provide extra nutritional value nearby during your trip. Multi-grain crackers, trail mix and fruits like apples, pears and bananas are great for boosting vitamins and nutrients. Individual packs of nut butters or guacamole are great for dipping, and a pudding cup high in calcium is a sweet treat that can also help your baby’s developing bones. Prenatal vitamins/medication: Prenatal vitamins are a critical component of your growing baby’s health, so you should keep your doctor’s recommended brand on hand while you travel. Be sure to pack any other prescribed medications that you are taking to prevent any unnecessary health issues. Comfortable closed-toe shoes: If you end up outside your vehicle, you will not want to deal with sandals or flip flops. Your trip may also require some walking or standing, so comfortable shoes are a must to ensure your comfort. Extra water: Water has countless benefits to both a pregnant mom and a growing fetus, with medical experts recommending 64 to 96 ounces of water each day for pregnant women. Travel can also contribute to dehydration, so be sure to keep enough water bottles on hand so you can stay fully hydrated at all times. Antibacterial wipes: Coronavirus demonstrated the need to keep things sterile, so do not forget your antibacterial wipes before hitting

the road. There are several EPArecommended disinfectants that you can use during stops and bathroom breaks. Lip balm/lotion: As a pregnant mom, you can use a little help when sharing all of your nutrients with your baby. Chapped lips and dry skin are especially common, so choose lip balms and lotions with extra-moisturizing coconut oil and shea butter to help with skin irritation common during pregnancy. Enjoying road trips while pregnant

If you are planning on taking an especially long road trip, there are some additional items that can help ensure your comfort. Tricks to staying comfortable

Even with the most comfortable vehicle, you are likely to feel the effects of the road after a few hours. When packing your travel bag, consider adding these items to help you feel more comfortable. Bring a travel pillow. Consider a lumbar pillow, which can cradle your back and take pressure off of your spine. There are many travel versions that can be easily inflated/ deflated when you are on the go. Plan for lots of breaks. Pregnant women typically need more breaks than the average person on the road, with one 15-minute break recommended every 1-2 hours. Not only does this ensure healthy blood flow, but you can also use the bathroom, grab a snack and stretch your legs. Start with a full tank. The last thing any pregnant woman wants

is to be stranded on the side of the road, so fill up your gas tank at the beginning of the trip. Be sure to monitor your tank throughout your trip and stop for gas far before empty, especially if you are traveling in rural areas where gas stations may be more limited. Avoid travel to remote places. Gas is not the only thing that may be limited in a remote area. Cell phone service may be limited, and if you go into labor or experience a medical issue, there may not be adequate medical care nearby. Just be prepared in knowing the areas through which you drive. As more Americans across the country take the coronavirus vaccine, it is incredibly likely that there will be an increase in travel. For pregnant women, that means some necessary safety measures to ensure the health of both mom and baby while you are away from home. Many of these measures are also good preparation for simply traveling more often in your local community while pregnant, too. There are still travel advisories in place and it is a good idea to check for COVID infection rates and travel advisories, and any local risks that could impact your health and travel before heading out. Expectant moms need to be near critical resources like local medical care in case of emergency. We all need to start moving around a bit more after the roller coaster of the pandemic. Pregnant moms just need a little more preparation before they hit the road to do so well-prepared and safely.

Lena Muhtadi Borrelli has several years of experience in writing for insurance domains such as allconnect, Healthline and Reviews.com. She previously worked for Morgan Stanley. connexions

special feature

receiving a birth defect diagnosis: help with understanding your options by foong-yen lim, md

special editorial submitted by friends steward partner cincinnati children's fetal care center 44

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Many parents are overwhelmed with excitement when they discover they’re expecting a baby. Additional emotions may arise, however, when they learn that their baby has a birth defect. Understandably, confusion, blame, sadness, and worry are among the most prominent feelings. As a fetal-pediatric surgeon in the Cincinnati Children’s Fetal Care Center, I encounter families around this stage in their pregnancy. They’ve either just learned that they’re expecting a baby with a birth defect and we’re their next stop; or they’ve been to another institution and are looking for a second opinion. In either case, it’s our goal to provide families with the most clear and accurate information we can to help them understand their baby’s situation and options. We’ve found that covering the following topics has helped families move from the initial diagnosis phase into the decisionmaking phase. If you’ve just learned that your baby has a birth defect, consider finding an institution that will walk you through the following steps, so that you can better understand your options moving forward. Provide One Clear Message In many instances, families have learned a lot about their baby’s condition before they walk through our doors. Some of it is accurate, some not. Birth defects are often highly complex and may require treatment and expertise from

Collaboration is at the heart of our approach. We encourage parents to participate in every aspect of their child’s care and we value their input.

dr. lim consulting with pregnant patient

many different medical specialty areas. Our goal is to minimize confusion and to get everyone, including our own specialists, on the same page. We do this by hosting “team meetings.” Our team meetings include all the specialists who might need to be involved in the baby’s care. This often means more than 2-3 physicians, and at times 6-7 physicians in the room with the mother and her support person. We also invite additional members of the mother’s support system to attend via tele-conferencing. We have found that having one clear message, as an outcome of these team meetings, helps families feel more confident in their decision-making. Minimize Guilt Understandably, families come to us bearing the weight of many emotions. One of the most prominent is guilt. Parents, especially mothers, often feel like they did something to cause the birth defect. We focus heavily on this emotion because once parents work through their feelings of guilt, they are better able to move forward. In turn, they’re also more likely to take care of themselves.

-Foong-Yen Lim, MD, Surgical Director of the Cincinnati Children’s Fetal Care Center

Good self-care is an important part of having a healthy baby. Birth defects happen in 1% of births. While it’s important to take steps to avoid “preventable” birth defects, more often than not, these birth defects occurred despite everything parents did. The unfortunate reality is that we often don’t know what causes them. We are discovering that birth defects once thought of as “flukes” were actually a micro-deletion of a chromosome. We need to continue conducting research to understand the disease processes better. Provide Treatment Options Different treatment options for birth defects are dependent upon the diagnosis of the baby. Some conditions can be managed medically, while others may need surgical intervention in utero or after the delivery. It’s important to find a center that is clear about the conditions they are capable of managing, as well as willing to share their outcomes data. This means how many procedures they’ve performed as well as survival information. We have evaluated over 7,400 high-risk pregnancies since 2004 and have performed more than 1,850 fetal procedures on these patients.

Here are a few examples of some conditions we routinely treat and intervene surgically: • Twin-Twin Transfusion Syndrome (TTTS): We routinely intervene in utero when babies have this condition. We have performed over 1,300 surgical interventions.

• Spina Bifida/ Myelomeningocele/ Meningocele: We don’t repair all types; just the most severe. We have performed over 100 open and fetoscopic procedures. • Bladder Outlet Obstruction (BOO): Our physicians have evaluated more than 500 patients for bladder outlet obstruction. Extensive experience and expertise allow our team to treat the most complex cases. • Fetal Tumors: We have evaluated more than 144 patients for fetal tumors, including cervical, mediastinal, sacrococcygeal teratomas, neuroblastoma and renal masses. • Congenital Diaphragmatic Hernia (CDH): Our Fetal Care Center is one of few places in the nation to offer fetoscopic connexions

endoluminal tracheal occlusion (FETO), a minimally invasive surgical procedure to treat the most severe cases of CDH. Our surgeons have performed more than 40 FETO procedures. Our center has an 86% survival rate for severe CDH post FETO. All babies post FETO treatment were discharged without oxygen supplementation to date. Support For The Whole Family We have found that mom and baby have better outcomes when

the baby’s community is well supported. I recommend finding a center that has dedicated social workers, genetic counselors, palliative care, and nurse coordinators that provide support and counseling to the entire family. I chose to become a fetal-pediatric surgeon because when I was doing my training, I saw the potential impact this specialty can make. It is possible to alter the natural

history of some high-risk birth defects or to correct some birth defects early before they turn into something that is irreversible. We can continue to improve not only the outcome of the baby, but decrease maternal risk related to the fetal surgery. Nothing is more rewarding than diagnosing a problem, helping patients determing the right course of treatment through pregnancy, and then watching these babies grow up.

At Cincinnati Children’s, we celebrate some of the best outcomes in the country and world for fetal and pediatric conditions.

-Foong-Yen 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 top experts in the nation for fetal care and our innovative treatment options bring real hope to patient families with outcomes that can change the path of your baby’s life.

Dr. Charles Stevenson and Mia pose for a picture during a follow-up appointment at the Cincinnati Children’s Spina Bifida Clinic

meet mia

Contact us for more information and resources. We’re available for consultation, transfers, or referrals 24 hours a day, seven days a week.

Mia was born with myelomeningocele (MMC), the most serious form of spina bifida, a congenital condition in which the spinal column does not fully form during pregnancy. When Mia’s parents first learned about Mia’s spina bifida diagnosis during pregnancy, the need for surgery and the surgical options available, they focused on doing what they thought was best for her. So when they learned Mia qualified for fetoscopic MMC repair surgery, they decided it was the best option. Rather than wait until after delivery, they felt the prenatal surgery at Cincinnati Children's Fetal Care Center would give Mia the best chance to avoid major complications later in life. The successful surgery was performed 24 weeks into the pregnancy and mom was able to deliver Mia naturally at 33 weeks.

1-888-338-2559 cfcreferral@cchmc.org www.cincinnatichildrens.org/fetal

Now at age 2, Mia needs braces and a walker to help her move around, but she is able to play and have fun like any child her age thanks to the team of experts across Cincinnati Children’s.

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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.” — Mounira Habli, MD

Advanced care from diagnosis to delivery. At Cincinnati Children’s Fetal Care Center, our goal is to provide support to patients along this journey from the moment of diagnosis by caring for her and her baby’s well-being, both physically and emotionally. Our expert team offers comprehensive evaluation and innovative interventions for the most complex fetal conditions. The newly expanded Special Delivery Unit provides 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.

cincinnatichildrens.org/fetal

photo courtesy of lucas favre, by unsplash

exercise during and after pregnancy: the dos and don’ts by maureen pray 48

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Exercising and staying active while pregnant is one of the best things you can do for you and your baby during your pregnancy. If you have a normal, healthy pregnancy and have been cleared by your health care professional, it is recommended that pregnant women get 30 minutes of exercise at least 5 times a week. Working out during pregnancy has many health benefits including reduced risk of preeclampsia, gestational diabetes, and hypertension disorders. Staying active can also reduce pregnancy discomfort, prepare your body for delivery, and help with postpartum recovery. Many pregnant women have concerns though about what is safe and healthy, in terms of exercise, for them and their baby. Here are some general guidelines to help you and baby stay active and safe. connexions

The Dos

Do talk to your healthcare professional before starting or continuing any exercise program and regularly discuss being active in your prenatal appointments. Your body is constantly changing during pregnancy and you may find that you need to change your workout habits as you move along in your pregnancy. Do workouts that are safe and healthy for pregnant women. These include walking, running (if you were a runner prior to becoming pregnant and cleared by your doctor), yoga, spin class, weight training, and swimming. With modifications, all of these workouts can be appropriate for pregnant women. Do wear loose fitting clothing that is comfortable and shoes that fit well and are meant for the type of exercise you are doing. Do drink plenty of water before, during, and after your workout. Pregnant women need at least 96 oz (12 glasses) of water a day. If you are exercising, then it is recommended you drink an extra 8 oz for moderate exercise. Increase this even more in hot or humid weather. Do continue core exercises! Many women think they can no longer do core movement while pregnant, but exercising your core during pregnancy can help with postpartum recovery. You will need to make modifications to core exercises at the end of the first trimester, but abdominal work can still be done during pregnancy! Do listen to your body! You know your body better than anyone else and there may be days where going to your bootcamp class doesn’t feel right and that is ok! Every pregnancy and person are 50

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different and you know when your body needs rest and recovery.

The Don'ts

Do not participate in workouts where falling is likely possible (i.e. outdoor road cycling), or activities with rapid directional changes (i.e. tennis) or any contact sports. While your baby is in a safe environment in the uterus, any outside trauma is not worth the risk. Do not bounce while stretching or overstretch ligaments. Relaxin is a hormone produced to help prepare the uterus at the beginning of pregnancy and toward the end of pregnancy to relax ligaments around pelvis. Because of this, pregnancy women are more susceptible to over stretching or causing injury while stretching. Do not hold your breath or exercise to the point of exhaustion. For decades, pregnant women were told to not let their heart rate get above 150 bpm. In more recent years, physicians have agreed that heart rates differ from person to person and a better rule of thumb is the conversation rule. During a workout, a pregnant woman should be able to hold a conversation easily and without difficulty catching her breath. If you are struggling to hold a conversation, turn down the intensity of that exercise or movement until you can easily talk while doing so. Do not lay flat on your back during the 2nd and 3rd trimester during exercise. There are many tools and modifications such as laying at an incline, doing the same exercise standing, etc., that a personal trainer or instructor can model for you. Do not exercise for weight loss during pregnancy. Working out during pregnancy is not the time to

set weight loss goals, but working out and staying active can help you achieve those goals after delivery. Staying active during pregnancy is a way for you to relieve discomfort, manage stress and emotions, and maintain a healthy pregnancy for you and baby. After delivery and during the postpartum phase, getting back into an exercise routine can be challenging and a good form of self-care for Moms. There are many physiological changes going on in a postpartum body as well as emotional and psychological considerations as well. It is important to not rush right back into exercise and recognize that everyone’s pregnancy, delivery, and postpartum recovery is unique.

The Dos, Part II

Do attend your follow-up postdelivery checkup with your provider before starting any type of exercise other than walking. The majority of women are cleared to exercise six weeks after delivery, but making sure you are healing properly is critical before starting to exercise again. Do be patient with yourself when starting to exercise again after delivery! Just because you are cleared at six weeks to work out does not mean you are completely healed from pregnancy and delivery, or that you are feeling ready to exercise again. It can take six months to a year for a full recovery from pregnancy and childbirth. Do seek professional help and talk to supportive family and friends if you are showing symptoms of Postpartum Depression. Approximately 19% of new mothers develop a postpartum mood disorder which is more serious than having the baby

blues, which typically go away about two weeks after delivery.

The Don'ts, Part II

Do not feel pressured to get your body “back to normal” very quickly after delivery. Western culture holds an unrealistic expectation that post-partum women should have it all together, including their figures, while also being sleep deprived, working, and taking care of a newborn. Take it slowly, be patient, and trust the process. Do not try to lose the “baby weight” by lacking in nutrition your body needs. Food is the building block to repairing muscles and tissues damaged during delivery. If you are breastfeeding, you will need whole food nutrition to make enough breastmilk for baby and not deplete your own energy storage of nutrients. Do not brush off pain when getting back into an exercise routine. You know your body better than anyone and if something doesn’t feel right while exercising in your postpartum body, seek out a personal trainer or a physical therapist that specializes in postpartum fitness. Help will ensure there are no injuries in the process. For more information on staying active during pregnancy, visit americanpregnancy.org or speak to a certified personal trainer that specializes in prenatal fitness and exercise.

things to consider...

when exercising pregnant stay hydrated --- keep a refillable water bottle with you at all times and refill as often as necessary

avoid activities that increase your risk of falling, such as contact sports, quick changes in direction, jumping, etc. opt for lower impact activities like yoga, walking, stair climbing, swimming and spin classes on a stationary cycle

always warm up first before beginning any exercise --- begin with stretching your muscles and take it slow

ensure you are eating enough to support both your pregnancy and any exercise you are doing

listen to your body --- take it slowly and let your doctor know of any changes you notice as a result of exercise

Maureen Pray is a Certified Personal Trainer at Burn Bootcamp in Gilbert, Arizona. She is also a certified Pre- & Postnatal Coaching Specialist with the Girls Gone Strong Academy, an organization with a focus on women's specific issues like body image, hormones, emotional eating, pelvic health, and more. Maureen is a wife and mom to two daughters, and enjoys traveling, running, and training for races in her free time. connexions

photo courtesy of james wheeler, by unsplash

the struggle is real:

a parenting perspective to which we can all relate by talitha a. mcguinness 52

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We've likely all heard many, many times about the realities of our "new normal" and how we are charting paths in "unprecedented" times. After over two years of living through one of the toughest pandemics of most of our lifetimes, we have grown weary of hearing phrases like these. While each and every person living through the last couple of years has had their own unique experiences, and some unbelievably worse than others, those with children (of any age, really), have lived things even more differently. From schooling, social gatherings, and even normal childhood development, parents have lived, watched, and perhaps even been part of events and decisions that may forever impact their children's lives. Based on a multitude of research, the anxiety and depression they have and are experiencing are at all-time highs. While parents are normally the drivers in the relationships, they have experienced their own losses --- both in employment and family or loved ones. They have suffered seeing their children miss out on milestone events like graduations, prom, weddings, travel, starting college, moments with grandparents and other family members, sporting and other extracurricular events, and so much more. The world literally stood still for longer than many of us care to think about. We had to make the best of what we had at the time. There were many days when it all felt unfathomable and fear often whispered to us that things would never be the same. One thing is for certain...parents have a much better grasp on how they want their lives and families to look and feel. Parents got a chance to decide what they wanted to take away from this trial and moment in time. Many found new employment. They learned that working from

home came with perks like being able to better help their children with school (when it was virtual), or see them off and greet them each day from the bus when school returned to in-person learning. It also gave them freedoms to enjoy breaks that might include lunch or a quick walk around the neighborhood with their kids. With so many things cancelled or put on hold until it was safer, things slowed down...way down. The slower pace gave us all more time, time to retreat, time to reconnect, time to appreciate, and time to figure a lot of things out. It made parents and families realize that life and the time we have and share with the ones we love the most is the most important of all. And that changed everything. Yet, for children in the middle and high school age group, they have seemingly felt the pangs of the pandemic the worst, and parents have had a front row seat. I'm not talking about an eat-some-popcorn and enjoythe-show kind of experience. These experiences that have been lost and the pangs of the loss felt so deeply that there have been many days and nights of frustration, tears, anger, sadness, and so many more emotions that have played out in the lives of ourselves and our children. We have wanted and dreamed of so many of these milestones that now may be in the past, never to return. While we can mourn those lost experiences, we need to make sure that our kids are okay. Are they feeling lost at school? Even the most involved children have found it hard to adjust to being back and what things look like now. Can we look at more relaxed academic expectations, at least until we feel collectively that kids are caught up? Can we make

sure our schools are adequately prepared with counselors to handle the overflow of emotions that often present in behavior while at school? Are they fitting in with their peers? Some had a hard time before and an even harder time now. They no longer get invited to "hang out" and you see that for the most part, they are happy isolating at home. While this seems fine at first glance, be sure that they are not using this isolation to avoid living life in the big world that is starting to move and turn again. Help them ease back into their world. Help them find new hobbies or interests to make it easier to "fit in". Help by initiating hang out time for them to get reaquainted with peers. Listen and be sympathetic when they stumble or take a little more time figuring it all out. They too have lost so many things, including crucial time to learn and grow during such impressionable and socially, emotionally, and physically developmental years of their lives. Unfortunately, this is time they will never get back, but we can help them navigate this time with grace and forgiveness. Parental support is one the most important pieces of any child's growth and development. Perhaps we are seeing tiny fractures in our relationships with our children, fractures that may have been there all along. Now, we have a little more time and perspective to work on sealing and healing them, as individuals and together as a collective whole. We can rethink our over-scheduled lives and start investing more time in each other. If nothing else, time over the past few years has shown us that we are so much stronger together. If we can build stronger families, just think how that can impact our communities and the world at large. connexions

EXPERTS IN THE

UNEXPECTED. When Maggie and Dom learned they were expecting conjoined twins, they sought out the best team to care for their girls. They found our Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment, one of the leading fetal programs in the world, with experience treating some of the most complex anomalies.

For more than 25 years, our Center has advanced the field of fetal medicine and offered specialized, cutting-edge care to over 28,000 families facing prenatally diagnosed birth defects. Our team’s expertise, dedication and drive has fueled breakthroughs in care that have benefited thousands of families, just like this one!

1-800-IN UTERO (468-8376)

fetalsurgery.chop.edu

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

I’M NOT TELLING YOU IT’S GOING TO BE EASY. I’M TELLING YOU IT’S GOING TO BE WORTH IT. ~ Art Williams

PHOTOGRAPHER

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The success of NILMDTS is dependent on the

remembrance portraits to parents

post-photography digital retouching skills of

suffering the loss of a baby.

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!

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We want your dreams of a family to come true.

Let us be your light to guide you there.

Connexions Spring 2022

Articles inside

the story of addy + lily: birth + separation of conjoined twins

receiving a birth defect diagnosis

addressing disparities + inequities

a reason to hope: living with CDH

the struggle is real: a parenting perspective to which we can all relate

pregnancy + the road: staying safe + comfortable in the car

superfoods to support women's health

PPROM + what to know if it happens to you

UC Davis lab develops fetal oximetry device to prevent unnecessary c-sections

receiving a birth defect diagnosis: help with understanding your options

advocacy from anguish: bethany weathersby's story

Oregon Health & Science University expands fetal care program