Lucas’ Story - Congenital Diaphragmatic Hernia (CDH)

We found out we were expecting our fourth child in early August 2016. It was a bit of a shock, but we quickly became excited to have a new baby in the house, as our youngest was 5 at the time. My pregnancy progressed like all of the others with the usual morning sickness that accompanied it. I had my 20 week scan in December, and we left there excited that we were having another boy to even out our two girls and one boy at home. We were not told there was a problem until four days later when my midwife called me at work. My heart immediately sank. Working in the medical field, I knew the terminology, but did not realize the extent of what a diaphragmatic hernia was and my midwife did not have a lot of information. I only knew I would have my care transferred to a high risk obstetrician and the baby would not be able to be delivered at the local hospital. 

Google was definitely not my friend that day, and I was convinced at that point that my baby would not make it. I had to go home and tell the bad news to my husband. It was over a week before we met with the obstetrician and had a follow up ultrasound to confirm that Lucas did indeed have a diaphragmatic hernia. Unlike many parents, our doctors seemed to have some knowledge of CDH and did not advise abortion. 

We lived in northern Indiana and were told we would have to travel 3 hours away to deliver at Riley Children's Hospital in Indianapolis where ECMO would be available. I went home and started researching and searching for other parents who had delivered at Riley. I wanted to hear their experiences. There were a couple of other hospitals we were considering, including University of Michigan and Cincinnati, and I wanted to make sure Riley was the place for us. I could not find anyone. Instead, I found several people from Indiana who were going to or had been to John Hopkins All Children's Hospital in St. Petersburg, FL. Every parent I talked to had told me that they did not feel confident in Riley's CDH experience. This was a huge red flag for me, so I started researching Dr. Kays. I saw his credentials and success stories. His 90%+ survival rate seemed too good to be true.

Two days after we had our confirmation ultrasound, I e-mailed Joy, his coordinator. I was scared and confused and honestly never thought I could deliver so far away from home with three other kids who were in school. Within hours, I had a response from her. She asked if we had a name for the baby and told me all about Dr. Kays. She said I could even speak to him on the phone if I would like. She reassured me that there were a lot of resources to help and told me about Tiny Hero. I wavered back and forth for a few weeks. I just did not know what to do. Even though my doctors seemed confident that Lucas would survive, I knew I would never forgive myself if I didn't get him the best care possible and something happened.

 I decided to contact Tiny Hero and ended up talking to Annie Zolman for two hours one night. She made me feel so much better and let me know that they would help us get to Florida if that is where we decided to go. I had a family member who knew a doctor that worked at Riley, and she was kind enough to ask his opinion of Riley's experience with CDH. When he told her that we should not go to Riley because they do not have enough experience, I knew at that moment what we needed to do. We decided we were going to Florida. We still went to Riley for a MRI and an echo. We learned that Lucas had his intestine, stomach, spleen, and about 30% of his liver up in his chest. Luckily his heart looked fine. 

We got the ball rolling quickly to meet Dr. Kays with Joy’s help. We had our consult scheduled for March, and Tiny Hero would help us get there. As soon as I met Dr. Kays, I knew we were making the right decision. He spent at least a hour talking with us about our son's condition, why they have such high survival rates, and how these kids not only survive but have a great quality of life. He gave us a 99% chance of survival in his care and a 20-30% chance of needing ECMO. The final prep work was done and at 37 weeks, I relocated to St. Petersburg with my mom by my side. We stayed at the Ronald McDonald House, which was also wonderful and a huge blessing. My husband and sister came down two days before delivery. 

I was induced at 39 weeks, 3 days. That was definitely one of the scariest days of my life, but I knew we were in the best hands. Lucas made his debut into this world at 2:30 pm on April 20, 2017. He let out a tiny cry and was quickly taken by the team to stabilize him. I briefly saw him before they took him to the CVICU. I remember Joy telling me that Dr. Kays said he looked too good, and he was going to send him back. It was so comforting to know that he was looking good right after he was born. Lucas did well for the first two days of life and avoided ECMO. Dr. Kays was constantly checking on him and making adjustments as needed. The nurses would text him in the middle of the night, and he always had a quick response. Lucas got quite a bit sicker on day 3. Dr. Kays said it was possible that his honeymoon period was a little longer than most in his severity group, but he knew just what to do to get him stabilized enough to have his surgery the next day. On day 4, they prepped Lucas for the OR, and we walked with him to say our goodbyes as Dr. Kays prepared to repair his hernia. This was another scary day, but once again Joy kept us calm by texting us during the surgery to keep us updated. His surgery went well, and they found that the MRI was correct in showing that everything was in the chest, including 15% of his liver. They also found something that was really interesting and explained his extended honeymoon period. A sac had formed around his hernia allowing his organs to migrate slower up into his chest cavity giving the lungs more room to grow and causing more diaphragm muscle to form. Since only 60% of the diaphragm was missing, this allowed Dr. Kays to be able to close it without the use of a patch. 

Lucas continued to improve every day and was extubated on day 10. That pathetic cry was the most wonderful sound. It was so nice to see him without a tube down his throat. My husband had to return home to Indiana to care for my other kids, but my mom stayed with me. On day 13, we were finally able to hold him. You take holding your baby for granted until you can't. This was definitely an exciting day. He continued to do well, and we were very fortunate that Lucas did not have any feeding issues. With everything going so well, we were discharged on day 25 and 4 days later we started our drive back home. 

I firmly believe Lucas did so well because he was in the best hands with Dr. Kays. I remember telling my husband that during this whole experience after he was born, I never truly feared losing him because I had so much confidence in our CDH team. It was difficult seeing Lucas with all of the tubes and wires and not being able to hold him right after he was born. It was also difficult leaving the rest of my family behind in Indiana, but I would do it again because I believe Dr. Kays is the best for CDH and there are so many people to support you and help you get there. The CDH community definitely becomes family, especially all of Kays' kids families. Today Lucas is 6 months old and doing awesome. You would never know he had such a rough start to life. I am forever indebted to Dr. Kays, Joy, and Tiny Hero.