Jayden's Story - Congenital Diaphragmatic Hernia (CDH)

It was April 5th 2007 when I woke up having that “feeling.” After having two boys, 8 and 11, I just knew I was pregnant. Jon and I had been married for only 8 months, I was finally completing my Bachelor’s degree, and I just received my first teaching position. How in the world was I going to fit a baby into the mix? Jon, my boys, and Jon’s daughter were ecstatic. I spent the first 20 weeks trying to figure it out. It was at that 20-week sonogram, that I was trying to rush through to quickly get back to my classroom, that I finally stopped dead in my tracks. You see, I have had two healthy kids, my brothers have healthy kids, my husband’s daughter was healthy. I was ready to find out the sex of the baby and get back to work. 

As I laid there, Julie the ultrasound technician, was taking longer than normal. When the doctor walked in, I knew something was wrong. The doctor shared with us that our baby had a diaphragmatic hernia. He explained that basically the diaphragm didn’t form completely. They could see that the stomach was by the heart. The doctor shared with us that this was very serious and a pretty big risk. At that moment, I did not care if my child was a boy or a girl; I didn’t care about my classroom; and I didn’t care how I was going to fit a baby into the mix. I was sad; I hurt, but I was going to fight. Julie did share with us we were having a boy, and Jon was so excited. His words were, “Yes! A football player.” My words, “I just want him to live.” 

We were told we had the option of going to All Children’s Hospital in St. Petersburg, FL (Dr. Kays was not there yet) or Winnie Palmer Hospital in Orlando, FL. We were told we needed to decide quickly to get the help we needed. We went home and shared the news with our family. That night I started doing some research. Honestly, there was not much out there. I did see Dr. David Kays’ name on a couple of sights. The next morning, the nurse from Lakeland OBGYN called and shared that Dr. Nixon knew of a doctor in Gainesville, FL that specialized in chronic diaphragmatic hernia named Dr. David Kays. I emailed Dr. Kays right away thinking it would be days before I heard back. NO!! He responded right away. He shared with me what I needed to do, and I did it. Being from Lakeland, FL, we were only a couple of hours away. He was honest and straight to the point. I could see the genuine care in his eyes. We started the doctors’ appointments. Every other week, Jon and I were going to Orlando for a sonogram and the other weeks we were going to my doctor in Lakeland. Once a month, Jon and I would make a day trip to see Dr. Kays’ team in Gainesville, FL. 

I stayed strong during the day and cried at night. I felt if I was strong Jayden would be strong, but I truly felt weak at night. I would not allow my mind to go anywhere but to a place of survival. If something happened, I would deal with it then, but for the moment, I choose to stay strong and positive for Jayden. I could not have done that without prayer!

We were able to have Jayden naturally. After nearly 22 hours of labor, Jayden was intubated and whisked away. After he was cleaned and stabilized, we were able to see him for the first time. It was terrifying seeing him hooked up to all the equipment keeping our son alive. Dr. Kays later explained to us that he was a left sided hernia, and that every organ was in his chest. The first major battle was for him to be stable enough with his underdeveloped lungs to withstand the three-hour surgery he was to face three days later. After the surgery, his next hurdle was for his lungs to develop. The care and compassion we received from Dr. Kays and his staff I cannot express in words. We then had the process of him learning how to eat, swallow, and digest his food. Jayden progressed phenomenally quickly. We were blessed never to need the ECMO machine to oxygenate his blood. After a month and a half of many prayers, crying and laughing with the staff, Jayden was well enough to go home on a nasal cannula. After being home for a month and a half, we were rushed back to Gainesville for surgery for a blockage in his intestines. Thank God and Dr. Kays all went well.

I am so happy to say that nine years later Jayden is a happy, healthy child and excels in football and baseball. It is AMAZING. There is so much hope for these children thanks to Dr. Kays, and his staffs’ tenacious dedication to their patients. The Vegter family is very blessed and prays for Dr. Kays and all of the babies and their families.

GOD BLESS

Jon and Hope Vegter