Life After Omphalocele: Curtis | The Children's Hospital of Philadelphia

Center for Fetal Diagnosis and Treatment

Life After Omphalocele

Born the weekend of the 2006 Fetal Family Reunion, 5-year-old Curtis has been attending the event ever since with his mom, Ashley.Curtis
Close to Her Heart
Five-year-old Curtis snuggles up with mom Ashley for a family photo at the reunion. For more photos from the reunion, see our slide show.

The slight blond-haired boy with an infectious grin says he’s looking forward to starting kindergarten in the fall. For now, he’s more interested in getting to the rides and games he’s come to expect at the annual event.

Fully clothed, Curtis shows no outward signs of omphalocele, a birth defect that causes the abdominal organs to protrude into the base of the umbilical cord, forming a sac outside the body.

When prompted by his mom, he proudly pulls up his shirt and displays what he calls “the shark bite on my belly.”

Grandfather David says Curtis has always been a fighter – just like his mom.

When Ashley first learned she was having a baby with omphalocele, doctors at her local hospital near Perkasie, PA, were not optimistic about his long-term survival. A voracious reader, Ashley went online to get answers and support from other parents who’d been through similar situations.

She found The Children’s Hospital of Philadelphia and surgeon Holly Hedrick, MD, FAAP, FACS, who worked with her to deliver a full-term baby and get him home as soon as possible.

Generally, babies with omphalocele remain in the hospital while the abdominal organs are gradually returned to the abdominal cavity with the aid of gravity. In some cases – like Curtis’ – a staged surgical repair is necessary because the baby’s abdomen needs to grow before the organs will fit back inside.

“We think he holds the record for getting out of here with an omphalocele,” David said. “He was out in eight days.”

That would not have been possible without Hedrick’s willingness to work with the young mom with a million ideas – including creating a mold of Curtis’ omphalocele so a special cast could be made to cover the sensitive area.

“We had a 4-inch omphalocele on a 7-pound baby,” Ashley said. “We wouldn’t be able to take him anywhere without coming up with a way to keep his belly protected.”

Once the cast was created, it was secured with an elastic band around Curtis’ abdomen. With the omphalocele covered, Curtis could be safely harnessed in an infant car seat.

As Curtis grew, his abdominal organs were absorbed back into his body and skin grew around the abdominal wall defect. At 7½ months old, Curtis returned to CHOP for surgery to close the omphalocele.

“Today, he’s just a happy, healthy boy,” Ashley said. “We come back for checkups and to see Sue [Miesnik, CRNP, MSN] and Jane [Wright, RN, RDMS], the nurses who cared for me and were in the delivery unit with me.”

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