CDH Preemies
40 weeks they say. That’s the goal, right? But what if we don’t make it that long? That’s okay! You are definitely not alone - 1 in 10 infants are born prematurely. Any pregnancy is stressful. There are so many unknowns, it’s taxing on the body, and the hormone changes can send even the sanest woman into a frenzy at times. On top of all the “normal” pregnancy stressors, many CDH moms struggle with polyhydramnios, potentially the stress and risks of the FETO procedure, or even just the added stress of the diagnosis, so premature labor is more likely for many of us compared to the average pregnant mother. Prematurity used to be much more dangerous than it is today. From 1990 to 2019, the prematurity survival rate in the US increased by 46%. Medicine has come so far! Babies as early as 21 weeks have survived. There is so much hope for preemie babies and even more hope for CDH preemies today than ever before!
Most premature babies spend time in the neonatal intensive care unit (NICU) until their due date, depending on how early they arrive and what medical care is required. And adding CDH to the mix typically leads to a longer NICU stay. However, prematurity and CDH do not mean babies are just surviving but also thriving as they grow into healthy individuals! You don’t have to take our word for it - these Tiny Heroes are excited to share their stories of hope for all premature CDH babies:
Dawson - 33 weeks
Dawson was born at 33 weeks and 1 day while the Fetoscopic Endotracheal Occlusion (FETO) balloon was still intact! But that didn’t stop Dawson from making his grand appearance. One fear of having a premature CDH baby is whether or not the child would weigh enough to qualify for ECMO. Luckily, Dawson did not need it. Despite being born 7 weeks early, he was a whopping 6 pounds at birth! He waited three and a half weeks for his CDH repair and rocked it! After his repair, the common signs of prematurity began to show more as he was still sensitive to light, touch, and sound. He didn’t start acting like a typical newborn until closer to his due date, which is common for many preemies. Dawson made his way home after 79 days in the NICU! He is now 7 months old, 5 months adjusted and tends to follow milestones closer to his adjusted age. He may be tiny, measuring in the first percentile for his actual age, but he is mighty and extremely resilient! Dawson was dreamt of long before he was born - his mom chose his name years in advance when she and her now-husband were dating and only 14 years old!
Paul - 33 weeks
Paul was a surprise CDH, giving his parents just a few days to prepare for what that meant. He was diagnosed after getting a second opinion when his mom, Marissa, went into preterm labor. Paul was born at 33 weeks, weighing only 4 pounds 1 ounce, putting him just over the cusp for eligibility for ECMO if needed. Luckily, Paul did not require it and was intubated for only 12 days. He was discharged after just 35 days in the NICU! The excitement was short-lived, unfortunately. Once they were home, Paul was brought back to the hospital for holding his breath. He had an inguinal hernia repaired, suffered from postoperative apnea, and finally went home again on 0.1 liters of oxygen. Once home, he weaned off oxygen completely after a month. He is now home with his parents in Florida, growing like a champ, and has already survived his first hurricane! Paul is surprising everyone as he is meeting all of his milestones. Marissa wants to remind parents of premature babies that they are not just fragile little eggshells — they are warriors and have a story to tell. She says the time goes by too quickly, and all preemie parents should remember to enjoy as many of the moments as possible - even while in the hospital. You’ll be home snuggling with your baby in no time. Stay strong, moms and dads!
Ryder - 34 weeks
Prematurity and CDH can’t stop Ryder from living life to the fullest and making everyone around him laugh constantly! Ryder gave his mom a bit of a hard time during the last few weeks of her pregnancy due to the excess amniotic fluid. Contractions started at 29 weeks, and her water broke at 33.5 weeks, but they were able to keep him until 34 weeks exactly. He was breech and had a two-vessel umbilical cord, but that didn’t stop him from growing to an impressive 5 pounds 13 ounces at birth. His prematurity likely contributed to his need for ECMO, though, as the doctors gave him a fairly low chance of needing it before he was born. He spent 22 days on ECMO, 35 days intubated, 85 days in the NICU, and over a year dependent on a feeding tube. He suffered two pulmonary hemorrhages and one accidental self-intubation, which made his NICU journey much longer and scarier than expected. But if you were to meet him today, you would never guess he was ever sick! Ryder is a goofball, full of energy, and has completely caught up with all his milestones. He is still in PT, OT, and speech therapy, but it is mostly for maintenance and monitoring at this point. He is 3 years old now, goes to preschool 4 days a week, and keeps up with his peers beautifully. He is the youngest in his class since he was born in August, and definitely the smallest as well (though that could just be genetics from his super short mommy), but he makes his presence known and has no idea that he is any different than any of the other kids. He plays with the big kids like he is the same size, runs around like he has full-sized lungs, and laughs like there’s no tomorrow. Prematurity on top of CDH can be scary in the beginning, but oftentimes it’s like nothing ever happened a few years later. Ryder, being the “big kid” of all these stories here, says to all the mommies and daddies out there, “Tiny Heroes are strong. And you are too!”
Evelynn - 29 weeks
Evelynn was born at 29 weeks, weighing only 2 pounds 10 ounces. Lydia, Evelynn’s mom, had a normal and uneventful pregnancy. After waking up one day with little to no movement, Lydia went to the nearest hospital but was flown to a specialist for an emergency c-section. Evelynn was born with undiagnosed right-sided CDH, hydrocephalus, and coarctation of the aorta. Doctors gave her parents a grim outlook, but her parents knew she was strong from the beginning. Evelynn’s had her CDH repair surgery at 4 weeks old, just one of a dozen surgeries for this little fighter. From an ostomy surgery to multiple shunt replacements and revisions for her hydrocephalus, as well as a g-tube placement, she rocked every one of them. Even a rough bout of E. Coli can’t stop her! After 148 days in the NICU, Evelynn defied all odds and came home! Her parents were elated to be bringing their miracle home finally. Evelynn continues to fight through a few other non-CDH or preemie-related issues, but she is now a thriving 17-month-old who works extremely hard every day to catch up to where she needs to be and improves daily! And none of these early struggles can prevent sweet Evelynn from lighting up the room with her precious smile!
Winter - 33 weeks
Winter made her grand appearance at 33 weeks and 3 days with severe left-sided CDH. Winter had a steep mountain to climb between her CDH and being premature. She had three major surgeries during her stay in the hospital, including her CDH repair, g-tube placement, and a tracheostomy. After spending 207 days in the NICU and 39 days in the PICU, Winter finally made it home! Winter is 9 months old now, 7 months adjusted, and thriving! Since coming home, Winter has come off her oxygen and is using her voice to babble! She is active, playful, and meeting most of her milestones. She is a little behind in her motor development, which is no surprise, after all, she has been through, so Winter sees physical, occupational, and speech therapists weekly. Between her therapy schedule and the extra planning and management required for trach care, thanks to around-the-clock home health nurses, her parents say it took some adjusting, but it is definitely doable. Although it is hard to say for certain, it’s possible that Winter would not have needed a tracheostomy had she not been so premature, but the size of her defect also made it difficult on her tiny body. Her mom, Rochelle, says the trach has positively impacted their lives! Winter was able to come home and truly thrive and enjoy life at home with her parents. Each day is filled with joy and laughter! Rochelle reminds moms of premature CDH babies everywhere to be patient. CDH has its impact on the lungs, but prematurity compounds that. Celebrate all the small victories and never compare them to other babies, even those in very similar situations. Every baby is so different, and that’s okay. They are so grateful to have Winter home with them. It was a long journey to get here, but Rochelle will be the first to tell you it is worth every sleepless night!
Meet More CDH Preemies
Left to Right: Asaiah - 32 weeks; Marc - 26 weeks; Summer & Autumn - 34 weeks; Hayden - 28 weeks
In honor of World Prematurity Day and Prematurity Awareness Month, we celebrate all the amazing preemie Tiny Heroes and their strong families! Prematurity within the CDH community is not uncommon - you are not alone, and there is always hope out there. Although they may be tiny, they are some of the mightiest fighters!
If you would like to connect with other CDH preemie families, please reach out so we can connect you with one of our many preemie families! For more information or support during your NICU journey or after you get home, check out these resources:
About the Author:
Allyson Birdsong is the proud mom of #TinyHero Sunnie Rose. She was born with severe left-sided CDH, is an ECMO survivor, and currently surviving her big brother one day at a time. Allyson lives in southern Oklahoma with her husband, Derek, their son Dawson (age 4) and Sunnie (born in 2022), as well as their two dogs, one cat, and all the farm animals.
Would you be interested in guest writing for Tiny Hero? We love to share different voices in our blogs. Any Tiny Hero parent, sibling, grandparent, etc., can potentially write for us! Send us an email to learn more: Stories@TinyHero.org
