Nathaniel’s CDH Story
My husband and I tried many times to start a family, and every time we got pregnant, it ended in miscarriage. After six miscarriages, we thought that having children wouldn’t happen for us. But in January of 2024, I found out I was pregnant. In the early weeks, we had several scares. As the weeks progressed, our fear turned to hope. We were having a baby! With my history and age (40), I was higher risk, so we took every precaution, including genetic testing.
As we neared the halfway mark of the pregnancy, it was time for our anatomy scan. We did this at our high-risk doctor’s office instead of our regular OB. I remember being so excited to go and see our baby boy. The scan seemed to go well, and we were happy and excited, but then the doctor came back in and told us there was a problem with our son. He had a congenital diaphragmatic hernia (CDH).
Our doctor might as well have been speaking a foreign language for all we knew about CDH. Our baby had a hole in his diaphragm, which had allowed his organs to migrate out of his abdomen into his chest cavity—talk about scary! Luckily, we were directed to the amazing team at the Chicago Institute for Fetal Health. They guided us through the process of understanding our son’s diagnosis, as well as the other complications associated with his condition.
At 37 weeks, it was time to meet our beautiful baby boy. After 30 hours of labor, we decided it was time to deliver him via C-section. He was born and immediately intubated. Nathaniel seemed to do well for the first couple of days, but early on he was diagnosed with DORV (double outlet right ventricle), meaning he would need open-heart surgery to repair his ventricle.
Nine days after birth, Nathaniel had his CDH repair. Surgery went well, despite them not being able to do the full closure due to a lack of space. He had a patch covering his repair site, allowing him to grow a bit bigger. Three weeks after he was born, he was extubated, and we finally got to hold our precious son.
For six amazing weeks, he was breathing on his own (on high flow), and we were anticipating coming home for the holidays. Suddenly, he developed a wheeze, and after some tests, we discovered he had tracheomalacia, meaning his trachea and bronchus were collapsing, making it more and more difficult for him to breathe. He was re-intubated. This began six more months of surgeries, comas, illness, and finally recovery.
Nathaniel’s CDH had significant complications and secondary diagnoses that made his recovery long and difficult. Our CDH warrior went through seven surgeries in his first year of life. We spent a total of 415 days in the NICU.
We are beyond happy to be home with our son today. He finally got to come home and meet his puppy brother, Cooper, his cousins, and all the people who supported him from afar during his long journey!
