Braxton’s Story - Congenital Diaphragmatic Hernia (CDH)
Braxton's CDH journey started with my 20-week ultrasound on August 27, 2020. I was excited to see Braxton again through ultrasound and confirm he was a boy! The ultrasound tech took longer than normal and kept going back to the heart. At that point, I knew something was wrong. At the end of the ultrasound, they had told me his heart was not in the right spot, and I needed to see the high-risk MFM to confirm. On September 2, he was diagnosed with Congenital Diaphragmatic Hernia (CDH). They had set me up to get an MRI to get a closer look at things. My MRI then confirmed Braxton had right-sided CDH. During that time, I was told I would have to deliver out of state and if I didn't want to do that, I had to consider termination.
We then consulted with Morgan Stanley Children's in NYC, where they had given Braxton a 0-20% chance of survival. Next, we took matters into our own hands and found CDH supporting groups on Facebook and found a mom very close to our home who had helped us get info on the best CDH hospital in the country. I had reached out to Joy at Johns Hopkins All Children’s Hospital and she made me feel so much better. She reassured me this was not a death sentence. I then told my fiance that we had no choice but to relocate to Florida from New York if we wanted to save our baby's life.
In November 2020, we packed up our stuff and our 3-year old at the time and started our journey in Florida. We left our older kids back in New York, where they could still go to school and live a normal life. Once in Florida, we met with Dr. Kays who told us our son's survival rate was not 0-20% but in fact 80-90% with a 100% chance of needing ECMO. Braxton was born on December 16, 2020, and was placed on ECMO within 15 minutes of birth. He had his repair the day he was born, having 70% liver up, along with intestines and bowel with 15% lung volume. He was missing 75% of his diaphragm so he need a patch. Braxton came off ECMO at 13 days old. Eleven days later, Braxton was finally extubated. We got to hold Braxton for the first time at 26 days old. We had tried feeding Braxton by mouth, but that was a huge struggle. Three weeks before discharge, Braxton had the Nissen and G-tube surgery. On February 27, 2021, Braxton was finally discharged from the hospital with the lowest setting oxygen and some feeding issues beating all odds New York had said about him. I cannot thank Dr. Kays and his team enough for saving my son and giving him the living chance he deserved!
