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Rare birth defect only treated at a few hospitals across the country

Posted at 3:46 PM, Nov 21, 2019

AURORA, Colo. -- For a two-and-a-half-month-old baby, Huntleigh has gone through a lot. She was born with her organs outside her body due to a rare birth defect called Omphalocele.

"Omphalocele is a developmental anomaly that is a failure of the normal enfolding of the baby during development,” said Dr. Ken Liechty, a pediatric and fetal surgeon at Children's Hospital Colorado.

Basically, omphalocele means organs like the stomach, bowel, and intestines are outside the baby’s abdominal wall, but still inside a sack. Surgeons are challenged with assessing each individual case and getting those organs back into the baby’s body.

Thankfully, for Huntleigh, that surgical correction was possible almost immediately after birth.

"Her organs and intestine were slowly reduced back into her abdomen – similar to rolling up a tube of toothpaste where you’re slowly pushing things back down into the abdomen and then closing the muscles over it,” Dr. Liechty said.

Every case is different, and some are more severe. But overall, the birth defect is quite rare. According to Centers for Disease Control and Prevention , 1 in 5,000 babies are born with omphalocele.

As infrequent as it is, Dr. Liechty says it’s actually a common surgery for Children’s Hospital Colorado, because not many hospitals across the U.S. are able to perform the unique technique necessary during the surgery.

“You can imagine if you’re a parent and you’re just given this diagnosis, you want to turn to a center that has that kind of multidisciplinary expertise that deals with this kind of problem all the time,” Dr. Liechty said.

The procedure required two months in the Neonatal Intensive Care Unit.

“It was long, it was definitely long,” said Huntleigh's mom, Peyton Swiftney.

However, it was worth it. Upon returning home, Huntleigh’s parents say nothing has been too complicated. They’re simply adapting to having a baby in their life.

“I mean to me it seems like a normal life with a child,” said Huntleigh's dad, Quinton Haley.

Once patients are in recovery, Dr. Liechty says there is a risk for hernias and they can also have problems eating, but generally they do really well and live a life similar to anybody else.

“I mean she might have a little acid reflux and some breathing troubles, but it’s nothing that is life threatening,” Swiftney said.

Her life may have gotten off to a rough start, but Huntleigh’s parents are able to find something positive out of the hardship they’ve faced.

“We’re thankful it made us stronger and just bonded all three of us a lot more,” Swiftney said.