Real Stories: Living with Omphalocele

Omphalocele, also known as exomphalos, is a birth defect of the abdominal (belly) wall. The infant’s intestines, liver, or other organs stick outside of the belly through the belly button. The organs are covered in a thin, nearly transparent sac that hardly ever is open or broken. To learn what it’s like to live with this condition or how families are affected, read these real stories from people living with omphalocele.

Hailey’s Story—Written by her mom, Francine

Photos of Hailey as a baby

Hailey was born with omphalocele, a birth defect of the abdominal (belly) wall. Although there is the possibility that Hailey will need more surgeries in the future, Hailey’s family is enjoying every day that they spend with her. Read her story below.

My husband and I were so happy when we found out that we were expecting our second child, Hailey. She was born at 37 weeks by Caesarean section. She was born with a birth defect called omphalocele, where her intestines, liver, or other organs stuck outside of her belly through the belly button. Her organs were covered in a thin, nearly transparent sac. When she was just a week old, Hailey had surgery to put her intestine back into her belly and close the opening, which was a long, three-to-four-hour process. I was a nervous wreck seeing her being taken into the operating room. I imagine it is hard for all parents that have to go through this with their children.

Hailey got very sick after the first surgery to repair her omphalocele. She became very pale because she did not have enough oxygen in her blood. The doctors gave her nitric oxide and steroids to help her lungs, and they kept her sedated so she could be comfortable. Her surgical incision later re-opened and the surgeon had to place a skin graft over the opening of her incision. Her situation improved when she started to use a nasogastric (NG) tube, a tube which was passed through her nose and into the stomach to place nutrients directly into her stomach. She needs to use the NG tube until she can take food and drink by mouth.

I was not able to hold Hailey until a month after she was born, but that special moment was worth the wait. She came home when she was 3 months old. There is the possibility that Hailey will need more surgeries in the future, but until then we are enjoying every day that we spend with our sweet baby girl.

Jude’s Story—Written by his mom, Nicola

Jude as a baby in the hospital and as a young boy

Jude was born with omphalocele, a birth defect of the abdominal (belly) wall.  Jude’s mother describes the anxiety she and her husband felt when Jude had to have surgery immediately following birth. But the success of that first surgery and the minor surgeries he’s had since proves his resilience to life’s challenges.  Read his story below.

We were overcome with relief and joy when Jude arrived in 2004. A few weeks earlier, we had learned of the loss of his twin sister, Holly, and that Jude himself was suffering from a birth defect called an omphalocele, a condition where abdominal organs stick out of the belly button –in Jude’s case, his liver. At 10 hours old and weighing only 4.5 pounds, his tiny body was operated on to put his liver back inside his tummy. It is impossible to describe the anxiety and helplessness we felt as parents watching him being wheeled into that operating room. A couple of hours later, we heard it was a success, and his recovery thereafter was amazing. Within 24 hours, the doctors had stopped all pain-killers because he wasn’t complaining! In the neonatal intensive care unit (NICU) we watched him slowly graduate from intravenous feeding to feeding tubes to being able to drink from a bottle, and he’s never looked back. He has had additional surgeries for other minor abdominal wall problems and remains smaller than his peers. Nevertheless, his resilience to life’s challenges remains. Nothing keeps him down! For us, he is a constant reminder to us of how precious and wonderful life is.