Gabriel's Story - Congenital Diaphragmatic Hernia (CDH)
My name is Maryann, and I am the luckiest mom in the world to have my son with us this year as a CDH survivor. Gabriel’s story is unique because he not only went undiagnosed all throughout my pregnancy, but he was diagnosed by chance on 7/9/18 at 4 months of age.
My son was born on 3/9/18. He was born healthy, but we noticed he was slightly blue. We thought it was bruising because shortly after birth he was pinker. At around 1 month old, he threw up a handful of times and fearing he had a stomach bug, we took him to the pediatrician. The vomiting stopped, and the pediatrician saw him smiling and in good spirits, so we didn’t think about it again. Gabriel at 2 months of age weighed 11lbs, and at 3 months of age he lost a whole pound.
I exclusively breastfed Gabriel and started pumping throughout the night to supplement with my own supply to help him gain weight. By 4 months of age, he didn’t gain one ounce. On day 7/9/18, I noticed his breathing pattern had changed. When he would nap it looked like he was struggling to breathe and unable to take deep breaths. But his demeanor was still the same—sweet, barely fussing, and was eating ok. After being on the phone with the pediatrician several times and consulting some of my friends who were nurses as a precaution, I decided to take him in for the last appointment of the day. When the pediatrician put the stethoscope to his back, her face turned white. She tried to look at me with a reassuring look, but I knew something was very wrong. I said through tears in my eyes “just tell me.” She said she could not hear any breathing sounds on the left side of his body. She ordered a chest X-ray, and that’s when our lives changed. He had CDH. My son received his repair surgery on 7/12/18, and he had half of his diaphragm missing. He now lives with a patch over his diaphragm which so far has been very successful. He was 4 months old when he received his surgery at Joe DiMaggio Hospital in Hollywood, FL. Our surgeon said his case is one of the only ones she had ever seen. We feel so lucky to have him alive and are so thankful for the incredible staff at Joe DiMaggio!