Leo's Story - Congenital Diaphragmatic Hernia (CDH)

It was December 12th, 2005, but it feels like it was yesterday. We had only been married a month as we headed for our 20 week ultrasound where I thought the purpose was for a gender reveal, now I know better. As I laid on the table with my husband, mom, and sister in the room, I remember how excited my husband was when they said it was a boy. His face lit up the room. And then my sister left since she had to get home to her own kids never suspecting what would come next. There was silence. We asked the sonographer if everything was okay. She said she had to step out for a minute to use the bathroom. A few moments later she came back with the neonatologist. I remember my mom whispering, it is never a good sign when they bring the doctor back. The doctor pointed to the monitor and said, “You see that. That’s his stomach, and it’s right next to his heart. It’s not good.” My heart sank and a lot of what he said all blurred together after that. He told us that our son had a congenital diaphragmatic hernia (CDH) and the outcome for these babies was not optimistic. He said our son would have a slim chance of survival and said that even if he did survive, he would have lifelong issues. He kept using the phrase “If you decide to continue the pregnancy,” and told us ending the pregnancy was a possibility. However, it wasn’t a decision I could make. I had to leave it in the hands of a higher power.

I couldn’t believe this was happening to me. I cried for weeks. I couldn’t look at babies, kids, or other pregnant women without my heart breaking. My doctor said it did not look good. Our son had a severe left-sided diaphragmatic hernia with many organs including part of his liver in his chest cavity. He recommended we see the staff at our closest children’s hospital. Their outlook was bleak, and they gave us no hope. I wasn’t willing to accept that. I told my husband we’d go anywhere to find a specialist that could help our son. And then we stumbled upon Dr. Kays at Shands in Gainesville, FL. It was such a relief as we lived in Florida. Meeting doctor Kays was the first moment since I had heard the devastating news that I felt any sort of hope. He told us it wouldn’t be an easy road, and he couldn’t make any promises. He agreed our son had a severe case, but that he had hope. That his methods were different than others, and that he oversaw the entire care of our baby. In that moment I knew, he was our only hope. I moved up to Gainesville in The Ronald McDonald House a month before my scheduled C-section.

It was a lonely time as my husband had to stay back in Sarasota to keep working. But it had been a lonely time since my 20 week ultrasound. On May 2, 2006, our son, Leo, entered this world. There were so many people in the room, but Dr. Kays made sure I got to kiss my sweet baby before they rushed him off. He was immediately put on a ventilator. At 24 hours old, Dr. Kays decided it was time to repair Leo’s hernia. A few days later, Leo wasn’t doing well and was put on ECMO to give his body the rest it needed. Every day was touch and go for a while. I sat by Leo’s bedside every day from sunrise until 11pm. I sat by him and made promises that if he fought hard to be with me, it would be an amazing life together. After 6 long weeks in the NICU 3 full of highs and lows, Leo was finally moved to the NICU 2 and I began to feel relief. He had made it. Our only obstacles now were eating and gaining weight. And to everyone’s amazement due to Leo’s severe case, he came home after 59 days in the hospital with NO oxygen and NO feeding tube. I was so scared when it was time to bring him home. The normally 2.5 hour ride back to Sarasota took 3.5 hours because I kept making my husband pull over so I could check his breathing. I would watch him breathe for hours. I took him to his pediatrician every time he coughed or I was worried about his breathing. He is our miracle. He is an active, smart, caring 11-year-old. Besides his scares from ECMO and his surgery and our annual checkups with Dr. Kays, he lives a perfectly normal life. He goes to a gifted school; he plays basketball; and looking at him, you would never know the battle he faced to be in this world. His little sister calls Dr. Kays our miracle maker. I couldn’t imagine our life without Leo.