Jaxon's Story - Congenital Diaphragmatic Hernia (CDH)
On Monday, December 17, 2018, my husband, Bryan, and I woke up extra early to 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 ten 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 a fully accurate depiction of our son Jaxon's health.
We arrived at our ultrasound appointment near our home in West Virginia with optimism and joy, expecting to hear that everything looked perfect for our growing baby, just like the experiences with our previous two children. 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 heart that something was wrong because this was a very different response 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. I had no idea 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 okay. However, 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 after that moment.
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 perhaps only one kidney. The MFM had only seen one other case of CDH in 20 years of practice. She told us that this was a very complex medical condition that didn't have a very favorable survival rate.
Evening knowing the risks, 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—Tiny Hero, CDH Stars, and Angels, to name a few, 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) and John Hopkins All Children's Hospital in St. Petersburg, Florida. We have two other young children, and we didn't want to be too far from them, so we went with CHOP, only 3 1/2 hours away from our home in West Virginia. We had thought Jaxon was given a death sentence, but the amazing people in these groups gave us a tremendous amount of hope. Both of these hospitals are very experienced with CDH kiddos, and we felt relieved with that insight.
After a full day of testing at CHOP, we met with Dr. Mark Johnson, MD, and went over our prenatal testing results. Dr. Johnson reassured us that we were dealing with an isolated CDH. Our baby had a perfectly healthy heart — it was just 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.
We had regular follow-up appointments with our local OB-GYN and periodic appointments to monitor CHOP's team for the rest of the pregnancy. 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 were incredible, and we are so thankful for the opportunity to stay there during this stressful time.
Jaxon was born on April 29, 2019. As is the case for many CDH babies, the first month of his life was a roller coaster, but the fantastic care from the nursing staff during this time reassured us that everything was going to be okay. 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 his incredible surgeon, Dr. Holly Hedrick. Two days later, Bryan and I were able to hold our baby boy for the very first time. I will never forget this day for as long as I live!
As 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; happy, scared, and nervous, but most of all, grateful that he finally made it home. We picked our other two children up from their grandparents' 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 had 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 breastfeeding.
Jaxon recently turned one and is the happiest boy we have ever seen. He brings so much joy into our lives every single day. 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 each time he has bounced back stronger than before. He continues to amaze us every day with how far he has come, given where he started.
We truly believe that prayer, surrounding him with positivity every day, and the incredible team at CHOP, has allowed us to focus on getting our baby boy Jaxon home safely. We chose faith over fear and were blessed with a strong, feisty little boy who is destined for greatness in this world.