Baby born with organs outside body comes home
FLIPPIN, Ark. — Five-month-old Russell is home for the first time since he was born. With his eyes open wide, he looks around, observing new surroundings.
Russell's parents, Danielle and Jacob Dunham, prepare his special formula with a pump. An attached tube feeds the infant.
"This runs into his tummy," Danielle says. "Wherever it is."
Feeding can be a delicate process for little Russell because of he has a rare condition called giant omphalocele. Russell was born with his stomach, liver, bowel and other organs outside his body, resulting in a five-month stay at Arkansas Children's Hospital in Little Rock since birth.
An estimated 775 babies are born in the U.S. each year with omphalocele, according to the Centers for Disease Control and Prevention.
The Dunham family brought their son home to Flippin on Wednesday — Danielle's 28th birthday.
"So far, (doctors) think (the prognosis) is going to be really good. We started out not knowing for sure, but it's gotten a lot better as he's gotten older," she said.
"We knew way back in January," added Jacob, 25. "Our very first ultrasound, they found something that just didn't look right. They sent us to a specialist and it just ballooned from there."
At birth, Russell's umbilical cord formed a "balloon" around his organs to protect them. In time, skin will grow around the area. Until then, the Dunham's will continue to undergo what's called the "paint and wait" method. Danielle and Jacob apply a special cream onto the omphalocele, which helps promote skin growth.
In three to five years, Russell will undergo "closure surgery," an operation that gradually shifts the organs back into the body cavity.
One of the greatest threats to Russell is contracting a virus. He doesn't get out in public often.
"My biggest fear is that it is flu season and he's at risk for the flu and for the respiratory virus that is going around right now," Danielle said. "We wash our hands, we limit visitors."
Dr. Rob Lyle, professor of pediatrics at University of Arkansas for Medical Sciences in Little Rock, is one of Russell's physicians.
Lyle also is a co-director of the state's Medical Home Clinic, which helps children with birth defects transition from the children's hospital to their local primary care provider.
Impressed with Russell's development, Lyle said that taking care of children with the condition has changed in the past 20 years.
"With kids like Russell, we used to be afraid to touch them and do much with them," Lyle said. "We wouldn't be trying to put them in a position with a pillow pad that has a cutout so he can lay flat.
"We wouldn't have done that 20 years ago. But babies aren't meant to be left laying in a crib, doing nothing with them. They need that interaction."
Dr. Hanmin Lee, chief surgeon for University of California San Francisco Benioff Children's Hospital, says omphalocele can be "pretty minor to very severe," depending on the size of the hole in the abdominal wall.
The cause of the condition is unknown and the clinic sees about 10 minor cases of omphalocele per year.
Infants with giant omphalocele typically receive treatment after birth.
"We've used newer techniques where we can use the sack instead of cutting it out like we used to," Lee said, "and then skin grows over the sack and we wait many months, sometimes even longer, and repair it afterward."
Despite his condition, Russell, for the most part, is a happy, normal, curious baby. His progression, Lyle said, is not solely attributed to modern technology.
"It's a lot about what parents and families do, what communities do," he said. "It doesn't happen overnight, and it happens with a lot of hard work. But I think sometimes people look at the enormity of the challenge and think kids can't overcome that. But, no, they really can."