Tripp's Story - Congenital Diaphragmatic Hernia (CDH)

My husband and I found out we were expecting our first child, and to say we were over the moon excited would have been an understatement. I was having an absolutely perfect pregnancy with our first son, Tripp. We were so excited going into our 20 week ultrasound. Little did we know that our world was about to be turned upside down. Tripp was diagnosed with congenital diaphragmatic hernia (CDH). While trying to process those three little letters, our doctor recommended I go ahead and have an amniocentesis done to make sure there were no big chromosomal issues. Our doctor also explained to us that these babies don’t have a high survival rate and recommended we find a hospital/doctor with expertise in this field. We were immediately referred to CHOP, Children’s Hospital of Philadelphia. We visited CHOP a few weeks later and underwent a battery of tests to further understand the severity of Tripp's diagnosis. At CHOP we learned Tripp had a large portion of his liver up and that he also had a large VSD in his heart. Tripp was given a very poor prognosis. We decided to continue searching for the perfect place, and the prefect doctor that would be caring for our sweet Tripp. I was introduced to a mother of a previous patient of Dr. Kays. After meeting with her and hearing all the wonderful praises that she sung about Dr. Kays, my husband and I knew we had to go and meet with him.

Several weeks later, we made the trip down to Gainesville to meet with Dr. Kays. Once we meet with Dr. Kays, it was clear that he was the doctor that we wanted to care for our baby. We relocated down to Gainesville at 36 weeks pregnant, and I was induced 2 weeks later. Tripp was born around 5:00 in the afternoon. Due to his significant defect, Dr. Kays performed his repair surgery first thing the next morning. Surgery went great and they were able to use a Gore-tex patch to close the hole in his diaphragm. The following day after surgery, we got the call that Tripp needed to be placed on ECMO. I still vividly remember walking into the NICU and seeing Dr. Kays sitting in a chair, drinking a cup of coffee while watching over Tripp in these first critical days! Tripp was on ECMO for 10 long, scary days. Once he was successfully weaned off ECMO, we started the process of weaning him off the ventilator and getting him on a regular nasal cannula.

Over the next several weeks, Tripp’s lungs started to expand and do more and more work every day. As he got stronger, and the need for the ventilator become less and less until he was finally extubated. Once Tripp was weaned off the ventilator, the next big battle was the infamous eating battle. Tripp was a good eater, but due to his serve reflux, he could not keep enough calories down. Also due to his VSD, his little body was having to work extra hard which was burning even more calories. So Tripp had to undergo another surgery to have a G-tube placed and a Nissan fundoplication. He was also on highly fortified breastmilk to help him gain weight appropriately. My husband and I were very uncertain about Tripp getting the G-tube/Nissan, but it proved to be a great stress reliever for us because we knew he was going to get the calories he needed to continue growing. He healed great from the G-tube surgery and we were discharged several weeks later. After 81 days in the hospital Tripp was discharged. Tripp went home on oxygen and continuous overnight feeds. 6 weeks later we returned to Shands for Tripp to undergo open heart surgery to fix his VSD. It was hard to see him in pain again, and to see him back in the hospital. But surgery went well and we returned home a week later. Tripp remained on oxygen for 7months and we actively used his G-tube for 9 months. At Tripp’s one year check-up with Doctor Kays we were able to have the G-tube pulled. The first year with a child born with CDH is hard, challenging and very overwhelming at times. But these babies come here fighters and they are extremely strong. With the expertise of the Dr. Kays and Joy, these babies can THRIVE!

Tripp is now three years old and doing amazing!!! He is a perfectly happy and healthy 3-year-old. He is constantly keeping us on our toes with his quick wit and spunky attitude! He was able to play soccer this year, and you would never guess the struggles of his first year.