Brody’s Story - Congenital Diaphragmatic Hernia (CDH)

We found out we were pregnant with our second child in October 2017. Our daughter was 5, and we were overjoyed we were having a boy. I remember thinking how we were so blessed to experience one of each! Fast forward to 20 weeks, I had my anatomy scan and wasn't told anything. I left that appointment oblivious of any issue. Soon after that, we traveled to the east coast (from California, where we live) to visit family and had a little vacation. On the night we were going to celebrate my husband's birthday in New York, I received a call from a nurse stating they wanted to follow up with me because they thought my baby had a "Congenital Diaphragmatic Hernia." She said it so nonchalantly that I didn't realize how serious it was. I mean, you hear "hernia," and you don't automatically think it's something serious.

So, I went on and googled it and found out how bad this news actually was. The US only had an average of 50% survival rate at that time.

The weeks passed, and after several doctor appointments with specialists and surgeons, we were repeatedly given the option to terminate. I was told by neonatologists at our hospital that our son would never be able to play sports or live a normal life. It angered me that they already were limiting him before he was even born! Each week we were told his case was looking more severe and not giving me any positive hope.

So, I decided to spend my time researching other parents in this situation and find support groups. This was the best decision ever! I researched many hospitals and programs, and after hours, days, and weeks on the phone and internet, my husband and I decided to go to Dr. Kays in St. Petersburg, FL. We uprooted our family across the country for the sake of our boy. The doctors in California gave our son a 15% chance of survival and an attitude of "it is what it is" and "we'll do the best we can 🤷‍♀️.” Kays gave him an 85% chance of survival! There was no question. We went to Florida. Tiny Hero was so amazingly supportive and helpful during this time. I remember reading the stories of other kids on their website, and it really gave me hope. Hope I didn't get from my doctors in CA.

I can't express how grateful I am for the entire team of hospital workers in FL! They were all amazing, and our boy has thrived because of their amazing care. He was a severe left-sided CDH case with liver up. He only had 5% diaphragm and was put on ECMO within the first hour of birth. He had his CDH repair while on ECMO at 12 hours old. ECMO for nine days and was in the hospital for four months. He came home with a g-tube and had a Nissen Fundoplication and oxygen. After less than six months, he no longer needed oxygen at home and at 13 months had his g-tube removed!

He has an extreme love of all sports but especially baseball and golf. I've been told his hand-eye coordination in these sports is as good, if not better than a 5-year-old at only two years old! He continues to amaze us with his sweet personality and talents. I'm thankful every day that we didn't listen to the doctors that were negative and were brave enough to travel for care. He is such a joy.