Gabrielle’s CDH Story
We were so excited to find out we were pregnant, and so was her big sister, Laila. Baby girl was set to arrive in July of 2023. Everything was fine until we got to my 20-week anatomy scan. Because of my age, I was going to the prenatal specialist for my anatomy scan. At the first visit, they were not able to get all of the measurements needed because the baby was very wiggly. I came back a few days later, and they finished the measurements. The doctor came in and said she was seeing something called CPAM. This was scary news, but she assured us that it was something that could be handled easily after birth. She ended up having me go for an MRI and heart echo to confirm things about a week later. We did the heart echo first. The doctor came in and told us the baby’s heart looked fine, but it was pushed over, and she noticed some organs were up and proceeded to show us a diagram about Congenital Diaphragmatic Hernias (CDH). She told us it could be fatal, with a 70% survival rate, and the devastation set in for us. The MRI and our prenatal specialist confirmed that it was left-CDH with the stomach, spleen, and intestines up.
A few days later, I met with my regular OB and talked about our diagnosis, and she suggested I look for a support group on Facebook. I took her advice and stumbled upon the CDH Support Network by Tiny Hero. I immediately posted in the group and asked for Atlanta moms’ experiences with CDH. Immediately, I got several responses. These messages told me there was hope, and many mothers mentioned Dr. Kays at Johns Hopkins All Children’s Hospital. We learned that CDH was his passion and that there was a whole floor at JHACH dedicated to caring for these babies. My husband and I spent our babymoon the next few days making phone calls to organize a consultation with Dr. Kays. We will never forget speaking with Joy and hearing her say, “First of all, there is so much hope!” We ended that call with an appointment in St. Pete and ended our babymoon with a name for our special girl: Gabrielle, which means God is my strength.
Several weeks later, we went to St. Pete for our consultation with Dr. Kays. He was so meticulous in looking over the MRI and ultrasounds. He said that Gabby would have a 98% chance of survival, and her CDH was moderate. She would have a low likelihood of needing ECMO. His estimate was about 6 weeks in the hospital. We knew this was where we needed to deliver our girl. After this, we attended a Tiny Hero race in Atlanta and met other kids who had CDH and were doing so well. Their stories were nothing short of miraculous and gave us so much hope for Gabby.
We relocated to St. Pete in early June when I was about 32 weeks. Weekly ultrasounds and an MRI showed things were stable. On July 12, 2023, Gabby was delivered via c-section. The team was ready, and she was immediately put on ventilation. A few hours later, we were able to go up and see our girl. It is hard to describe how hard it was to not be able to hold her right away, but feel a sense of comfort knowing she was in the right hands. Five days later, she had her hernia repair. It was a success, and Dr. Kays told us she had a Grade B defect. Gabby healed quickly and was extubated 3 days later, and we got to hold her the day after that! A little over a week later, Gabby was breathing on room air! Gabby continued to make great progress and was discharged on July 31.
We came back to Atlanta a week later and started settling in. Unfortunately, a couple of weeks later, what we thought was worsening reflux, was actually a bowel obstruction caused by scar tissue. Labor Day weekend, we landed at Scottish Rite Hospital in Atlanta, and Gabby had surgery the day after she was admitted. Dr. Smith performed a successful surgery and, thankfully, she didn’t lose any bowel. Her first year of life kept us on our toes and was challenging in many ways, but we made it through.
Today, Gabby is almost 2 years old and a pretty typical toddler. She is walking and climbing everywhere and is a total chatterbox. Her reflux is so much better, and she loves eating! We are so grateful for all of the help we received along the way from our family, friends, Tiny Hero, Fore Hadley, and the stories of other families with a CDH diagnosis. Our wish is that others can find comfort in our story, know they are not alone, and that there is so much hope for kids with CDH.
