Jaxon’s Story: Prenatal Diagnosis, Pregnancy Management and Postnatal Care of Congenital Diaphragmatic Hernia

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When Sharelle was 20 weeks pregnant, she received devastating news about the baby boy she was expecting. She sought care at Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment and her child’s outlook went from bleak to hopeful. Today, Jaxon is a happy, healthy 2-year-old who continues to amaze his parents.

Here, Sharelle describes the experience in her own words.

Jaxon smiling next to photo of him in hospital as infant Jaxon, now 1, next to a photo from his time in the hospital On Monday, December 17, 2018, my husband, Bryan, and I woke up extra early to go see our growing, healthy baby on ultrasound. We already knew we were having a boy because we’d done a blood screening when I was 10 weeks along. During that screening, we also were told that our baby boy was healthy! Little did we know, the news we got that day was not an accurate depiction of our son Jaxon’s health.

We arrived at our ultrasound appointment near our home in West Virginia with optimism and joy. Just like our other two children, we expected to hear that everything looked perfect for our growing baby. After the ultrasound exam, we were sent to the waiting room and told that the doctor would go over the results with us. I knew in my gut that something was wrong because this was very different than my previous pregnancies.

The doctor told us there were some abnormalities noted on the anatomy scan. The heart was shifted. He recommended we see a maternal-fetal medicine (MFM) specialist for further evaluation. I remember that day so vividly. We walked out of the doctor’s office feeling scared, sad and confused. What I didn’t know was that the worst was yet to come.

Three days before Christmas we sat in the MFM waiting room feeling anxious and scared, we quietly prayed that this doctor would reassure us that everything was going to be OK. But when we met with the MFM, the first thing she asked was, “How do you feel about termination?” We were stunned and had a hard time processing anything she said thereafter.

She went on to explain that Jaxon’s heart was on the far-right side of his body. He had a heart defect, possibly congenital diaphragmatic hernia (CDH), and possibly only one kidney. The MFM had only seen one other case of CDH in 20 years of practice. She told us that this very complex medical condition doesn’t have a very promising survival rate.

Termination was not an option for us. We were committed to doing whatever we could to give our baby a fighting chance. I scoured the internet and learned that babies born with CDH have about a 40% to 50% chance of survival. I also found a few CDH Facebook groups and asked their members for recommendations on where to go for care. The overwhelming majority of people highly recommended Children’s Hospital of Philadelphia (CHOP). We had thought Jaxon was given a death sentence, but the amazing people in these groups gave us a tremendous amount of hope.

After a full day of testing at CHOP, we met with Mark Johnson, MD, and went over the results of our prenatal testing. Dr. Johnson reassured us that we were dealing with an isolated CDH. Our baby had a perfectly healthy heart — it was displaced due to the CDH — and he had two working kidneys. We left with the hope that our son had a good chance of not only surviving but also living a normal life.

Jaxon smiling wearing a cape For the rest of the pregnancy, we had regular follow-up appointments with our local MFM and periodic appointments for monitoring with CHOP’s team. When I was 36 weeks pregnant, we relocated to the Ronald McDonald House in Camden, N.J., where we stayed for more frequent monitoring until Jaxon’s birth. The care and hospitality given at this facility was incredible, and we are so thankful to have been allowed to stay there during this stressful time.

Jaxon was born on April 29, 2019. The first month of his life was a rollercoaster. The amazing care from the nursing staff during this time gave us reassurance. They told us success stories about other CDH babies, which was instrumental in giving us hope during this extremely stressful time.

Five days after he was born, Jaxon took a turn for the worse and was placed on extracorporeal membrane oxygenation (ECMO). We knew that ECMO was reserved for the most severe cases of CDH. We were in a panic knowing that babies requiring ECMO support have a decreased survival rate.

Jaxon was on ECMO for 25 days. A few days after he was taken off ECMO, he had the hole in his diaphragm repaired by Holly Hedrick, MD. Two days later, Bryan and I got to hold our baby boy for the very first time. I will never forget this day for as long as I live!

Jaxon began weaning off his sedation medications and respiratory support. The next big hurdle he faced was feeding. He had issues gaining weight due to a combination of reflux and pulmonary hypoplasia (smaller lungs). The medical staff recommended using a feeding pump and fortifying Jaxon’s breast milk with formula for added calories.

After nearly three months in CHOP’s Newborn/Infant Intensive Care Unit, Jaxon was discharged to our home in Charles Town, West Virginia. We were overcome with so many emotions. We were happy, scared and nervous, but most of all grateful for him to have finally made it home. We picked our other two children up from their grandparent’s house and continued home as a complete family for the first time.

Once home, Jaxon’s feeding issues continued. He struggled to take to a bottle due to an oral aversion, so we continued to feed him using a feeding pump. Feeding was exhausting at times, but it was critical for his growth and has a lot to do with his overall success. One of our favorite quotes is “tough times don’t last, but tough people do,” and the first few months at home definitely toughened us up. It took months, but by November, Jaxon was officially taking a bottle and breast feeding.

Jaxon recently turned 2, and looking at him now, you would never know the incredible hardship he went through. He has a spunky personality, a contagious laugh and continues to amaze us every day. He loves to play outside, running around and chasing his siblings.

He has regular appointments with a physical therapist and feeding specialist near our home. He’s had some minor bumps in the road along the way, but he bounced back strong. He continues to amaze us every day with how far he has come given where he started.

We truly believe that prayer and surrounding Jaxon with positivity every day, along with the incredible team at CHOP, is what allowed us to focus on getting our baby boy home safely. We chose faith over fear and were blessed with a strong, feisty little boy who is destined for greatness in this world.

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