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Entries in Omphalocele (2)

Thursday
Dec062012

Texas Tot Heads Home After 850 Days in Hospital

iStockphoto/Thinkstock(FORT WORTH, Texas) -- Christmas came early for an Abilene, Texas, family whose 2-year-old daughter is home Thursday after spending her entire young life being treated at a Fort Worth hospital.

Adalynn Willett was born with her intestines and liver outside her body.  The toddler went home for the first time this week after spending 850 days in Cook Children's Medical Center.

"She is very excited to be home," says her father, Bryan Willett.  "She is full of joy."

Her trip home was a long journey in the making.  

Over two years ago, Adalynn was born with a birth defect in her belly wall.  All of her intestines and her liver were outside of her body.  The condition is known as omphalocele, and doctors discovered it when Adalynn was still a fetus.

After her birth, her parents thought the hospital stay would only be about three months.  Twenty-eight surgeries and countless hours of physical therapy later, the young girl walked out of the hospital, the only home she had ever known.

Hospital staff had become her extended family and the sense of pride in her condition is evident.

"The fact that we were able to manage it so that she is going home for Christmas is nice," says Adalynn's attending physician, Dr. Nancy Dambro.

And, after spending almost every day with the young child, Dambro notes the trip home is not bittersweet.

"You'd think it is, but it is not," she says, adding, "Her job is not to be here every day being cute and smiling at me and cheering me up on my rounds.  Her job is to go home and become a productive human being."

Omphalocele is extremely rare.  Each year, about 1 out of every 5,386 babies born in the United States is born with the abdominal abnormality, according to the Centers for Disease Control.  

Adalynn's condition posed an even bigger challenge for the more than half a dozen physicians and medical staff at Cook Children's because, unlike most cases of omphalocele, her entire intestinal system was outside her body.  Known as giant omphalocele, such occurrence happens in only 1 out of every 10,000 babies born in the U.S.

Copyright 2012 ABC News Radio

Wednesday
Jan112012

Baby Born with Organs Outside Body Receives Rare Surgery

UT Health Science Center at Houston(HOUSTON) -- 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.  A thin membrane that keeps the organs intact 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.  It is unclear why the condition forms 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 on March 25, 2011, via Cesarean section at Children's Memorial Hermann Hospital in Houston.

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 condition.

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.

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."

Copyright 2012 ABC News Radio







ABC News Radio