When Emily and Paul Cullman went in for their 20-week ultrasound, they imagined hearing good news. Instead, they heard words they had never expected: echogenic bowel. Doctors had found a bright spot on their baby’s intestine, something that can sometimes point to serious health concerns.
The couple had already completed early genetic screening. They knew Emily carried the cystic fibrosis (CF) gene, but the news felt distant, almost academic. Once they were informed that echogenic bowel happens more frequently in babies with CF, they elected further testing, which revealed Paul was a carrier too. An amniocentesis soon confirmed what no expectant parent ever anticipates: their unborn daughter had inherited both of their CF genes, meaning she was diagnosed with CF.
As a pediatric respiratory therapist, Emily had seen the impact of CF firsthand. She knew it was a lifelong disease, and that understanding made the diagnosis even harder to bear.
“The diagnosis was devastating. In the early days, tears came easily. Every time I thought about it, I cried," Emily said. "It was just so overwhelming."
Cystic fibrosis, or CF, affects how the body makes mucus. It can cause life-threatening problems with breathing, digestion, and growth. Many babies with CF face a difficult start, including surgeries and extended stays in the neonatal intensive care unit, or NICU, after delivery. Emily and Paul wanted to do anything they could to protect their daughter.
That is when they found the SSM Health Cardinal Glennon St. Louis Fetal Care Institute and, for the first time since the ultrasound, they found hope.
A new option, a new chance
During their first visit, the doctors mentioned an innovative medication. The medication had transformed the lives of kids, teens and adults with CF, but its use during pregnancy was still new territory.
Early findings from other fetal centers nationwide suggested that this medication could cross the placenta and into the baby’s bloodstream, helping stabilize her health before birth and possibly preventing dangerous complications like meconium ileus, a bowel blockage common in babies with CF.
"If there was even a chance it could help her, we had to try," Emily said.
Working closely with her care providers, Emily began taking the medication 30 weeks into her pregnancy. Each week, she returned to the Cardinal Glennon St. Louis Fetal Care Institute, where maternal-fetal medicine specialists, genetic counselors, and pediatric pulmonologists monitored her health and her baby’s development.
Their care was also part of a first-time collaboration between three nationally recognized programs: the SSM Health Cardinal Glennon St. Louis Fetal Care Institute, the SSM Health Cardinal Glennon Children’s Hospital Pediatric Cystic Fibrosis Center, and the SSM Health SLUCare Center for Specialized Medicine Adult Cystic Fibrosis Center. Together, these programs created a coordinated approach that supported the care of mom and baby during pregnancy and helped establish a consistent experience for their family from diagnosis through delivery, with a plan for continued care into adulthood.
When their daughter, Clara, was born at 39 weeks at SSM Health St. Mary’s Hospital - St. Louis, the first hours were critical. One of the first signs that a baby's intestines are working correctly is passing their first stool. Babies with CF often struggle with this and then need emergency surgery.
Clara passed this test beautifully. She ate, grew stronger, and never needed to set foot in the NICU. Instead, she went home in her parents’ arms, doing well and full of promise.
Thriving with love and care
Today, Clara is thriving.
Because CF affects digestion as well as breathing, Clara takes tiny digestive enzymes before every feeding to help her body absorb nutrients. Her parents carefully sprinkle the medicine on a spoonful of applesauce and offer it to her before every meal. Researchers have found that, in some cases, prenatal CF medication may also reverse or help prevent the exocrine pancreatic insufficiency that prompted Clara's need for these enzymes.
“She is doing amazing, growing, thriving, and surprising the doctors at every visit,” Emily said.
Emily continues to take the CF medication so that it gets to Clara through breastfeeding. And when Clara is a little older, new treatments designed for children with CF will become available to her.
For Emily and Paul, the difference between what could have been and what is today is difficult to express in words.
"There is hope now," Emily said. "When we first heard the diagnosis, it felt like the bottom fell out. But thanks to the doctors at Cardinal Glennon and the new treatments that exist today, our daughter has a chance at a full life."
A Message to other families
The Cullmans want other families facing a CF diagnosis to know they are not alone.
"It is okay to be scared," Emily said. "It is okay to cry. It is okay to ask, 'Why us?' But there is so much more hope now than there ever used to be."
Paul agreed. "When we first heard the news, we feared the worst. But once we learned about the new options, it felt like a weight was lifted. It changed everything."
Their experience is one of the first in the country where a baby with CF received treatment before birth. Their story is already inspiring doctors and researchers to find more ways to give babies with CF a stronger start.
Today, Emily and Paul are soaking up every moment of their new lives as parents. Feedings. Sleepless nights. Baby smiles that make everything worth it.
"We know the road ahead will not always be easy," Emily said. "But thanks to faith, science, and the love of everyone who walked this journey with us, our story began with hope. And every day with Clara is a gift."
