Carter’s Story - Congenital Diaphragmatic Hernia (CDH)

We went into our 20-week scan, ready to see our little girl. We had previously found out at 16-weeks that we were having a girl. It was just like any other appointment our technician showed us, and as far as we could see, she was fine, a happy little girl moving all around. The doctor came in, and he told us that she had CDH. My husband and I had never heard of it. Now I was considered a high-risk pregnancy, so I had to see a specialist. I had so many appointments for ultrasounds, MRIs, and ECHOs. They told us Carter had his spleen, bowel, stomach, intestines, and 30% liver up. We had her via C-section at 37-weeks.

On June 3rd, 2019, Carter weighed 5 pounds 10oz. I remember hearing her little cry before they took her up to her room. My husband followed. Due to my c-section, I got to see her 5 hours after she was born. She had a great first night, called the honeymoon stage. Then, she was put on ECMO. She was on ECMO for 6 days. I just remember everything that I had read about ECMO was scary. Indeed, it’s very scary. Even though it was terrifying, it gave her body time to rest and not work so hard. She had her repair surgery on day 3. She had enough diaphragm that they sewed the patch to it. She was on the ventilator for 14 days.

We were finally able to hold her for the first time. She just had to start working on feeding for her gain weight and be discharged. We left the hospital at 41 days. She came home on .1 liter of oxygen and was off it in 3 months. Now, she is seven months and a thriving little girl. She is on one medicine for reflux. She loves trying to keep up with her older brother. She is strong and a fighter. She truly is our Tiny Hero!