Trenton's Story - Congenital Diaphragmatic Hernia (CDH)

My son is Trenton is a 10-year-old LCDH survivor. I went in for a routine ultrasound at 19 weeks. The doctor said it looked like a hernia but didn't get into specifics and couldn't be certain so I needed to come back once the baby switched positions. After 2 weeks, we returned and he confirmed that there was an abnormality. He explained CDH and told me I could terminate my pregnancy or see a specialist at Shands in Gainesville. Clearly I was going to see the specialist. An amniocentesis was later done and everything else was normal. A few weeks later I met Dr. Kays, he gave my son a 70% chance of surviving. His stomach, liver and some of his intestines were in his chest and his heart was displaced. He informed us of all the things that could happen and the difficulties we could face. My due date was 11/28/05 and Dr. Kays wanted me down several weeks before in case I went into labor early. He told me that I would be induced so that they could be sure he and all the staff would be there.

I moved to Gainesville towards the end of October to the Ronald McDonald House. I had to have several ultrasounds, heart evaluations and stress tests done towards the end of my pregnancy to monitor the baby. On Nov 14, 2005 I was induced and after 14 hours of labor and an emergency C-section (due to heart rate dropping, because the cord was around his neck). My son finally arrived on Nov 15, 2005 at 2:52am. Of course I only got a quick glance, but I did get to hear a little cry. They kept him sedated and he had his repair at 5 days old. A patch was used because the hole was too large to be closed without one. No ECMO was needed, and he continued to thrive. He was a little slow with feedings, but finally picked it up. I was able to hold him for the first time 2 weeks after he was born. I also was able to pump the whole time he was in the hospital, so he received it via tube and then bottle once we got to that point.

After a month in NICU, we got to come home without a feeding tube or oxygen. At 6 weeks old, he started vomiting and I took him to his pediatrician in town (who was not familiar with CDH). He told me my son may be lactose or have a stomach bug. A few days later, I rushed him to the ER because the vomit was green and smelled. An x-ray confirmed he was having a bowel obstruction. Dr. Kays was contacted and wanted him in Gainesville ASAP so he was transported to Shands via ambulance and Dr. Kays did surgery to repair the obstruction (which apparently was pretty bad). After a few weeks we were back home and doing well. He did catch every cold and bug known to man as a baby so we were always on our toes and always overly concerned but overall he stayed healthy. At a routine check-up with Dr. Kays when he was 8 years old, he noticed an undecended testicle and umbilical hernia. So we had to have another surgery for the umbilical hernia repair and orchiopexy. His last check-up was last year and all was good! He is a healthy active boy and has a 1st degree level 2 black belt. I am so blessed to have only been a few hours from Dr. Kays. He is a wonderful doctor.