Ella’s CDH Story
Ella was diagnosed with a left-sided congenital diaphragmatic hernia (CDH) before birth during her 20-week anatomy scan.
We were sent to Phoenix, 3 hours away from home to get a follow-up MRI, ultrasound, and echocardiogram to see exactly what was going on. After our consultation with Phoenix Children’s Hospital, we learned that their survival rate was only around 60%. They said Ella would surely need ECMO and if she survived she would need a 6-9 month NICU stay. They made it clear that Ella’s severity made it unlikely she would survive.
Meanwhile, Johns Hopkins All Children’s Hospital in St. Petersburg, FL has a specialty CDH unit. I learned about JHACH in the Tiny Hero Facebook group between the time we were diagnosed and the time we did our MRI with PCH. During a consult with JHACH, Dr. Kays gave Ella a 90% chance of survival with a 50% chance of needing ECMO over the phone just by using the tests PCH had done. Dr. Kays gave us all the confidence we needed to know that their care would be the best option for Ella.
At 34 weeks gestation, our family relocated to St. Petersburg and would remain there for 99 days - 2,000 miles from home. Once we arrived, JHACH did all of the tests again so they could get a better look at what was going on. Ella had about 21% of the lung volume of a healthy baby and her stomach and 35% of her liver were in her lung cavity. This caused her heart to push all the way to the right side of her chest. In an MRI, Ella’s left lung was unmeasurable because it was so small.
Ella’s delivery went smoothly and better than expected - Bayfront did a great job of managing my care and both the CDH team and labor team were all so compassionate. She was immediately intubated upon birth after two tiny cries and had her repair surgery on day 5 of life. She never needed ECMO. She did have one pulmonary hemorrhage the day after surgery and needed a blood transfusion. On day 14 of life, her medical team attempted to extubate her and she immediately started to have a pulmonary hemorrhage again. I’ll never forget how scared we were as we were rushed out of her room into the hallway as they decided to intubate her again. No one could ever explain why it happened. After another blood transfusion and a week of rest, we attempted extubation again on day 21 and all went as expected. We finally got to hold her for the first time when she was 22 days old. Ella was moved to CPAP and then eventually to regular oxygen. She’ll remain on oxygen for about the next year because we live at 6,500 feet elevation and we don’t want to take any chances with her developing pulmonary hypertension or any other breathing problems.
While we were prepared for Ella to have some delays after everything she went through, she left JHACH with no brain damage detectable in an MRI. She tested above average and highly above average on her cognitive and neurological tests before discharge. She started rolling just before turning 4 months old. We’re amazed by how normal everything is considering just at the beginning of this year we were grieving the idea that we might not bring our daughter home.
Our family is so grateful for the Tiny Hero organization. We never would have learned that we could save our daughter if it weren't for the Facebook group with so many people recommending specialty hospitals. Our daughter would not have made it if we had stayed in the state for her care.
