Colorado family welcomes home baby girl recovering from rare birth defect

A family in northern Colorado is sharing their story in hope of encouraging other parents who are going through a rare birth defect that impacts an estimated one in every 4,000 infants at birth. Andrew and Haley Priebe recently welcomed their first child, Charlotte. However, the journey to get her home was not as easy as they once hoped.  

Charlotte, now 10 weeks old, was born with an omphalocele. An omphalocele is a rare medical birth abnormality where children can be born with intestines, liver or other organs protruding out from their abdomen. With modern technology, most parents are prepared for the challenges ahead at birth as the abnormalities can be detected prior to birth.  

"(Charlotte) was diagnosed with an omphalocele. It was pretty scary and pretty nerve-wracking," Haley said.  

The Priebes said they were quickly advised to seek further care from Children's Hospital in Aurora to assure their firstborn was given proper attention. For months the expecting parents drove to the Denver metro area for checkups, ultrasounds and more. And, one day after a meeting with doctors, they were told they were going to welcome their daughter early.  

Haley was induced weeks early and gave birth to an otherwise healthy daughter.  

"We got so lucky," Andrew said. "It was scary for a few days." 

Before addressing her omphalocele, Charlotte was introduced to and bonded with, her parents.  

"The thing I was looking forward to the most was finally seeing what she looked like," Andrew said. "It was absolutely incredible." 

While Haley was given care from her procedure, Charlotte and Andrew were taken to another part of the hospital for care. Two days after she was born, Charlotte underwent surgery to properly fix her abdomen.  

"(With omphaloceles) it is known that infants born to older mothers are known to have a chromosome abnormality," said Dr. Henry Galan, a fetal surgeon and maternal-fetal medicine specialist at the Colorado Fetal Care Center at Children's Hospital Colorado. "For Charlotte, she was super fortunate to not have a super large defect." 

Baby girls are more likely than baby boys to experience an omphalocele. And while the severity of the defect depends on factors like chromosomes, Dr. Galan said many children have a 90% survival rate.  

For the Priebes, Charlotte's recovery went much faster than anticipated. 

"We were told to plan on anywhere from a couple of weeks to a couple of months in the NICU, which sounded daunting," Haley said.  

However, just one week after she was born, the Priebes took Charlotte back home to Fort Collins.  

"I could see her and hold her little hand, and hear her little squeaks and hear her little cries," Haley said.  

The Priebes credited the staff at Children's Hospital for making sure their daughter was treated as if she was one of the medical staff's own children.  

Andrew and Haley Priebe encouraged any parents who have recently learned their children will be combating similar complications to seek out advice and treatment from trusted local medical professionals, and to have faith in the work they can do.  

"It is going to be okay. It is scary, but we had nothing but amazing care along the way," Haley said.  

"We are incredibly lucky. For us to have this little one here with us that we can love on and treat as a normal baby and forget that this ever happened is a bigger blessing than we ever could have imagined," Andrew said.