Charlotte’s Story - Congenital Diaphragmatic Hernia

I was 24 weeks pregnant when my baby was diagnosed with right-sided Congenital Diaphragmatic Hernia (CDH). We had never heard those terms before. The doctors in New Jersey gave her about a 50% chance of survival, and some even suggested we terminate. I had to grieve for the home birth I had planned and the healthy baby I thought I would have. I spent the rest of my pregnancy terrified. It was difficult to even think about decorating the nursery or buying baby clothes.

We visited the doctors at Children's Hospital of Philadelphia (CHOP) as soon as we could, and I finally felt some hope. We learned that we would have to relocate to Philadelphia and to expect 3-6 months in the hospital.

Charlotte was born at 39 weeks after a very difficult and lengthy labor. She came out with her eyes wide open, swatting at the doctors as they began to stabilize her. My husband was able to cut her cord and announce that she was a girl, and they laid her briefly on my tummy.

Within the first few days, we got the sense that she was doing much better than anticipated. She never went on ECMO. She had her repair surgery at eight days old. She was extubated at 14 days old. She struggled with feeding after extubation and eventually needed an NG tube. The decisions we had to make during this time seemed so difficult, including when she needed a blood transfusion. All the doctors and nurses commented how feisty she was, a fighter since the first day. She came home from the hospital after 29 days, and we were so relieved. She did not need any breathing support at home.

The first few months of feeding were harder than I anticipated. We had been so focused on breathing that I didn't fully understand what a challenge feeding could be for a CDH baby. I remember nursing, then trying a bottle while pumping, then pushing the rest through the feeding tube, all while weighing her before and after. Those were long days.

Now Charlotte is three, and she is absolutely thriving. The team at CHOP still follows her. She has been recommended for some PT due to low muscle tone, and she occasionally uses an inhaler when she has a head cold. If I could talk to myself or someone else in my position during those dark few days shortly after diagnosis, I would tell her that there can be a happy story. You can find strength you did not know you possessed, and you can find support to get through the long days. Charlotte is still full of fire. She amazes and challenges me every day. I can't wait until she is older and I can share with her just how amazing she really is!