Expert Treatment at Fetal Care Center Helps Chloe Overcome Rare Omphalocele Condition

Zach and Nicole were ecstatic when they found out about their pregnancy. They held a gender reveal party during the second trimester and surrounded by family and friends, celebrated the happy news of a baby girl.

A week later, however, with Nicole 17 weeks pregnant, their baby was diagnosed with omphalocele, a rare condition in which some or all of the organs in the abdomen develop outside the body.

“Omphalocele. A word that would change our future and cause a lot of stress and uncertainty,” said Nicole.

They began with online research, wanting to know what this condition would mean for their child, as well as how to pronounce it (aam·fuh·luh·seel). They joined a support group. They met with fetal specialists at the University of Cincinnati Medical Center and were soon referred to the Fetal Care Center at Cincinnati Children’s.

Nicole credits her husband for being a “grounding factor” during a time of great uncertainty. “Having such a supportive husband was a true blessing and helped me get through the emotional heaviness of the situation”. 

The expectant parents decided they would go to any length to help their baby arrive as safely as possible. 

Meeting with Fetal Care Center Specialists, Creating a Path Forward

Previously unsure what to expect, Nicole and Zach both felt confident in the path ahead after meeting maternal-fetal medicine specialist David McKinney, MD, and others in the Fetal Care Center. The team provided a detailed explanation of what the couple could expect during and after the pregnancy. 

Educating the family is an important aspect of care, as is information gathering. The parents meet with experts from throughout the hospital, including maternal-fetal medicine, neonatology, pediatric surgery, and other specialties as needed.

“This ensures we know as much as we can about the baby before birth and allows us to make the best possible plan for the rest of the pregnancy and immediately after birth,” said Dr. McKinney. “In order to provide this level of care, we use the most advanced diagnostic imaging—fetal MRI, ultrasound and echocardiogram—as well as comprehensive genetic counseling and testing.”

As part of her testing, Nicole had an ultrasound every other week, which increased to once a week as her due date approached. It was important to monitor her and the baby.

“Nicole showed tremendous strength, courage and grace through this process,” said Dr. McKinney. “She went above and beyond to ensure the best for her child.”

Successful Omphalocele Surgery Days After Birth

In March 2022, Chloe was born almost 6 weeks early at the Fetal Care Center Special Delivery Unit, one of the only birth centers located inside a pediatric hospital.

Since her omphalocele was small and isolated, Chloe’s surgery was planned for soon after birth. However, the surgeon originally scheduled to perform the surgery was out of the country at the time. Enter Foong-Yen Lim, MD, surgical director at the Fetal Care Center.

When the new parents heard about the change in plans, Zach immediately searched Dr. Lim’s name online.

“The first video that came up was [Dr. Lim] explaining the surgery he was going to perform on Chloe,” said Nicole. “And Zach said, ‘OK this is good.’”

When Chloe was 6 days old, after her breathing had stabilized, Dr. Lim led the surgery to successfully repair her abdomen.

A comprehensive evaluation is important and necessary, Dr. Lim stresses, in order to learn if a baby has a small, isolated omphalocele—like Chloe’s—or a large, complex omphalocele. The care and outcomes for each type can vary. For example, if the omphalocele is large, the baby’s belly needs to grow or be stretched enough before surgery.

“The natural history of an omphalocele that only contains a portion of intestines has an excellent prognosis if there is no associated genetic abnormality and syndrome,” Dr. Lim explained.

Chole, who has no genetic component associated with her omphalocele, did well after surgery. She struggled to feed because she initially got her nutrition intravenously—meaning she was fed through an IV—but was able to go home after 32 days in the Newborn Intensive Care Unit (NICU).

At home, Chloe continued to use a nasogastric (NG) tube inserted through her nose and into her stomach. After five days at home, though, Chloe pulled out the feeding tube.

“Once her NG tube was out, she started eating really well from a bottle and we never looked back. She’s now happy, healthy, and very active,” said Nicole.

Celebrating a Birthday, Staying Busy

According to Dr. McKinney, Chloe only had a small risk of developmental delay following pre-term delivery at 34 weeks. He added, “I expect Chloe to do very well. I wish her and her family all the happiness.”

Chloe, who will soon turn 2 years old, returns to Cincinnati Children’s every few months, as needed, and is seen in the NICU Follow-up Clinic every six months. She’s scheduled for a motor test around her 2^nd birthday to make sure she is developing well.

Back home, just east of Cincinnati, Chloe enjoys many activities, including swimming and gymnastics. The goal is to make sure their daughter has a “super strong” muscle core, said Nicole.

She and Zach want to make sure that Chloe’s care team at Cincinnati Children’s knows how thankful they are—and always will be.

“We are eternally grateful for all the physicians, nurses, therapists, child life coordinators and support staff who made it possible to bring our girl safely into the world. We were in the hands of the world’s best care team at Cincinnati Children’s.”

(Published March 2024)