Infant Born with Organs Sticking Out of Her Abdomen Has Life-Saving Surgery: 'Miracles Do Happen' (Exclusive)
Hallie Wiebusch was born with giant omphalocele, a birth defect in which abdominal organs protrude outside of the body
Danielle Wiebusch was surprised to learn she was pregnant just two months after marrying her high school sweetheart Hunter in June 2022. But the couple from Williston, North Dakota, soon warmed up to the idea of being parents sooner than expected.
Their excitement turned to concern when the 10-week ultrasound showed that their baby girl — later named Hallie — had fluid building up in her tissues and organs, a condition called hydrops. Danielle was told she would likely miscarry. From that moment on, she had to have weekly ultrasounds to check for the baby’s heartbeat.
“It was nerve wracking,” says Danielle, 26. “They were very convinced that she was not going to make it.”
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The couple didn’t have a baby shower, decorate the nursery, or celebrate the pregnancy because they were too worried about losing their daughter. Instead they were given information about abortion clinics in nearby states. But they decided not to terminate the pregnancy.
“If she wasn't able to be here with us, then the higher powers were going to be in control of deciding that — I didn't want to be the one to decide that for her,” Danielle says.
The baby was soon diagnosed with giant omphalocele, a birth defect of the abdominal wall, in which abdominal contents protrude into a thin-walled sac outside of the abdominal cavity, according to the NIH.
In Hallie's case, her small intestine, liver, colon, stomach and part of her bladder were encased in a grapefruit-sized, balloon-like ball coated by a thin membrane, just above where her belly button would be.
Hallie was first referred to specialists in Bismarck before ending up at Children's Minnesota hospital in Minneapolis, nearly 600 miles from home.
About one in 4,000 to one in 6,000 babies are born with giant omphalocele, says the baby’s surgeon, Dr. James Fisher, pediatric and fetal surgeon at Midwest Fetal Care Center and Children’s Minnesota.
“There are very serious ramifications,” Dr. Fisher says.
Giant ompaloceles can cause breathing issues and heart issues, he says. Also, a standard delivery could cause the baby’s liver to be damaged, causing major bleeding, which can be fatal for the baby, Fisher explains.
On April 25, 2023 Hallie Mae Wiebusch was born via an expanded c-section, so as not to damage the giant omphalocele. The 8-lb. girl was delivered at the The Mother Baby Center inside Children's Minnesota in Minneapolis. The Mother Baby Center is a partnership between Allina Health and Children’s Minnesota.
Moments after Hallie was born, Fisher and a team of experts examined her in an adjoining room. Her organs were in a bubble poking outside her body, and they were covered by a thin membrane. But Hallie was breathing and her lungs were functioning, Fisher says. The omphalocele was intact and her liver was not damaged, he recalls. Hallie was then transferred to the NICU at Children’s Minnesota.
When she was just three days old, Hallie had a 3.5-hour surgery to put all her organs back in the right places without injuring the them or damaging the lungs. “Everything went well,” Dr. Fisher says. Since Hallie’s umbilical cord was attached to the omphalocele, Fisher had to surgically reconstruct her belly button.
“At the end of the surgery, she had everything back where it was supposed to be,” Dr. Fisher says. Her intestines her liver, everything. And her lungs were okay.”
Baby Hallie spent 124 days at Children's Minnesota. Every other week, Hunter commuted back home — a 10-hour drive — to work in the oil fields. Danielle stayed with Hallie.
"Being by myself was really hard," she says. "Every time he left I was so scared."
Hallie was finally discharged on August 25, 2023, to continue recovering at home.
“She’s doing really, really well,” Dr. Fisher says. “She’s thriving."
These days Hallie loves bubbles and splashing in the bath. “She’s a spitfire,” her mother says. She’s learning to talk and give kisses.
Weighing about 17 lbs., Hallie still has a feeding tube but is learning to eat purees and will eventually eat by mouth. Dr. Fisher says he expects her to "have a relatively normal childhood."
He adds jokingly, "She's going to be able to run around and have fun and be ornery and do all the fun things that young kids do to their parents,"
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And they will relish every moment.
“I still can't believe that she's here with us and she's doing great,” Danielle says. “I just want her to have the most normal life that she can have.”
Hunter adds, “And just to do everything that she ever wants to do.”
Her parents share Hallie’s story to encourage other parents not to lose hope.
“Miracles do happen,” says Danielle. “I am just so happy that we didn't give up on her."
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