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
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, and she is now a happy, thriving baby. 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.