Jan. 10, 2012— -- Kelly Davis' first ultrasound results seemed to take longer than the others during the routine 12-week visit. As moms came in and out of the waiting room, elated by the first grainy images of their growing babies, Davis was anxious as she waited for the results.
Finally, doctors told her the news: Baby Hayes' organs were developing on the outside of his body.
The condition, known as an omphalocele, is a birth defect in which the fetus' intestines and other abdominal organs stick out from the belly button.
"Once we heard the word, 'omphalocele,' it was our world," said Davis, 29, of Texas.
A thin membrane that keeps the organs in tact usually covers the omphalocele. While the condition can range in size and severity, the intestines, and sometimes the liver and spleen, protrude outside the baby's body.
About one in 10,000 births result in some form of an omphalocele, and about 25 to 40 percent of infants with an omphalocele have other birth defects, as well. Heart defects are common in children with omphaloceles. It is unclear why omphaloceles form in some babies.
While it is normal for organs to develop outside of the abdomen of the fetus up until the 10th week in utero, an omphalocele might develop if they do not return to the abdomen after that initial period.
After a pregnancy with seemingly endless appointments and ultrasounds, Davis gave birth to Hayes March 25, 2011, via Cesarean section at Children's Memorial Hermann Hospital in Houston, Tx.
"I was so excited to meet him, but the anxiety was almost overwhelming,"the new mom said. "I didn't know if he would breathe on his own or eat on his own or whether the omphalocele would stay intact."
The nurses secured the omphalocele after delivery and immediately took Hayes to the Neonatal Intensive Care Unit. During the weeks that followed, Davis and her husband learned how to take care and treat the omphalocele. Hayes was luckier than many babies born with the condition. He did not have a heart defect or other birth defects in relation to the omphalocele.
But it was bigger than most omphaloceles and there is usually not enough tissue to surgically put the organs back in the body and sew the skin up, said Dr. Kuojen Tsao, professor of pediatric surgery at The University of Texas Health Science Center at Houston.
"We can do an operation known as component separation," said Tsao, who treated Hayes. "It's not necessarily a new technique, but it is new to these problems in babies."
Component separation allows for reconstruction of a large defect without requiring a separate flap of skin, and it restores the structural support of the abdominal wall.
Traditionally, the condition requires several operations to tighten up the abdomen and bring the edges of the skin fully together, but Tsao believed the component separation was possible for Hayes because the doctors had waited several months for him to grow and develop more skin and tissue to work with in covering the organs.
"Surgery always has risk involved," Tsao said. "We wanted to try and get back to doing just one surgery to fix the condition. Every time you go in again, there's risk of injuring the bowel and liver, there's blood loss, and then that baby is going under with anesthesia. We figured if we could do it once to fix the problem, we decrease the amount of risk."
While it is possible to live with the omphalocele, it is a much more difficult life, Tsao said.
"There are definitely kids who have walked around with this sac-like belly," Tsao said. "It's not impossible to manage, but it's certainly a different beast."
After his mom spent months treating the condition and even documenting her world on her blog, "O Baby," Hayes underwent surgery Friday to correct the organs.
"The surgery went perfectly," Davis said. "Both surgeons were incredibly pleased. We're looking forward to a simpler way of life."
Despite the difficult pregnancy and an offbeat way of starting motherhood, Davis said she's grateful for the experience and wouldn't have it any other way.
"If I could rewrite our story, I wouldn't change anything about it," Davis said.