Aj’s Story - Congenital Diaphragmatic Hernia (CDH)

I was 16 weeks into my 3rd pregnancy. My older two kids were 3 and 4 at the time. Allen and I were so excited to be having a baby. He had wanted a girl, and I wanted a boy. We said the typical "as long as they're healthy, I'm happy!" I had a scheduled amniocentesis because Allen has a chromosome disorder that can be passed down. During the ultrasound that they do before they perform the amnio, the MFM told us he thought something was wrong and that he needed to take a look. That's when he told me Aj had a Congenital Diaphragmatic Hernia. What's that? Is my child going to live? What is his quality of life going to be? All different questions ran through my head and out of my mouth as I'm in tears. He explained that his diaphragm didn't form properly, and at this time, he couldn't tell how severe it was. When I left that appointment, I was in tears for days. I was heartbroken. Why my child? What did I do to cause this?

As my pregnancy went on, I found it hard to enjoy pregnancy things. I spent my free time doing an immense amount of research. I ended up going to Boston Children's Hospital, and it was an all-day affair. I had an echocardiogram, fetal MRI, ultrasounds, and blood work. We met with the pediatric surgeon. She told us his case was extremely severe, and he would only have a 50% chance of survival and an extremely long hospital stay. I wasn't okay with that answer. I did more research and found Dr Kays. I had all of my tests and scans sent to him. We had a phone consultation. He gave Aj a 90/85% chance of survival and a 10-12-week hospital stay if he needed ECMO.

Aj was born on November 18, 2019. He let out a cry and was then intubated within the first 2 minutes of his life. He did much better than we had all expected. When he was around 36 hours old, he needed to go on ECMO. I was scared, but I knew I came to Florida for a reason. The next morning, he had his repair surgery on ECMO! He was missing 85% of his diaphragm and had only 20% lung volume. He spent 77 days in the CCDH unit. He came home on oxygen and with a G-tube.

He is 10 months old now and thriving. He's doing everything he should be doing. If I could go back to my pregnancy, and when we first got his diagnosis, I would tell myself, CDH is not a death sentence. I did nothing wrong to cause this. No, it is not fair what my son went through. He is the strongest baby I've ever met. He's the happiest baby, and his diagnosis has taught me so much. It's been a hard, long journey, but I'm so grateful for where we are now. Tiny hero has helped us tremendously. All the stories that brought us hope, to all the incredible people who work for this organization who supported us financially and emotionally. CDH is not a death sentence. There is so much hope for these kids. You just need to believe in them and find a medical team that believes in them as well!