When we were expecting our second child, we wanted the gender to be a surprise. We hadn't found out the gender of our first child, a girl. My second pregnancy was very much like my first no complications, always measured on track, the baby always had a strong heartbeat, and I didn't even experience any swelling in the heat and humidity of July when I was 8 months pregnant. I knew in my heart it was a girl and I bought girl clothes, girl bedding, and we concentrated on girl names. It didn't come much as a surprise when the doctor said, "It's a girl!" What was a surprise to us was that she wasn't breathing and had a life-threatening birth defect we had never heard about congenital diaphragmatic hernia (CDH).
Because all of this was a surprise, our hospital where we delivered was not equipped to handle such a critically ill baby. We named her Leah Claire and quickly had to send her off in an ambulance to the closest hospital with a NICU, two hours away and in another state. Leah was able to have surgery to repair her right sided CDH at two days old. She was in the hospital just under six weeks and came home with a naso-gastric feeding tube and a feeding pump which we used overnights for about a month. Leah had minor issues as a baby such as feeding complications (mostly due to food allergies) and had a gross motor delay. She sat up later than typical babies, crawled later, and walked at 22 months. Other than that and her 5 inch scar on her tummy, by age three you would never know to look at her how her life started out.
Leah wasn't done with her surprises yet. The summer before she turned three she had some minor vomiting and complained her tummy hurt. On her third birthday we took her to the Dr. because the pain had increased and we found out she had re-herniated a small part of her bowel through the diaphragm again. After another ambulance ride, another surgery, and a few more scars, she was back to being the active, happy girl we love so much.
Leah is now almost four and captures everyone's heart who meets her. She loves to read, sing, and ride her scooter. She loves princesses and can tell you the details of every Disney princess story. Leah has an older sister whom she looks up to the two are best friends. She will show you her scars if you ask and knows all about how she was in the hospital as a baby and had surgery.
We hope the surprises life has in store for Leah are good ones from here on out, but we wouldn't change her birth story if we could. We hope Leah's CDH story can be an inspiration to those families who are surprised to hear the same diagnosis and know that sometimes princesses can live happily every after even if it takes a surgery or two.
