Fetal Care Institute treats babies facing complex medical diagnoses in the womb
Kiki deBettencourt cheerfully greeted Leah Allen and Brett Cunningham as she wheeled a mobile vital signs monitor into their private waiting room at the SSM Health Cardinal Glennon St. Louis Fetal Care Institute.
“Is Atlas moving a lot today?” Kiki asked.
“He sure is!” Leah replied, hand on top of her stomach.
Leah and Brett were looking forward to welcoming their first child, but for a time, worry overtook excitement. At Leah’s 15-week ultrasound, her obstetrician told her that something looked unusual on her baby’s abdomen. The doctor referred her to the Fetal Care Institute.
“For three weeks, there were lots of tears, lots of Googling, lots of concern,” Leah said.
At 18 weeks, they had their first appointment at the Fetal Care Institute, where the team confirmed a diagnosis of gastroschisis, a condition where some of a baby’s organs develop on the outside of the body through a hole in the abdominal wall.
While no one wants to hear that their unborn child has complications, the couple was relieved to have answers and felt assured all three of them were in good hands.
“We were worried initially, but the more we came here and got to know everybody — and everybody’s so personable and knowledgeable about gastroschisis specifically — any worry that we had kind of wore away,” Brett said.
The SSM Health Cardinal Glennon St. Louis Fetal Care Institute treats babies facing complex medical diagnoses in the womb and supports the well-being of mothers and families. The institute brings together pediatric specialists from SSM Health Cardinal Glennon Children’s Hospital and maternal-fetal medicine specialists from SSM Health St. Mary’s Hospital, as well as nursing, social work, genetics, diagnostic imaging, neonatology and more.
When a patient is referred to the Fetal Care Institute, the first step is advanced fetal diagnosis. Then, the team connects all the necessary providers and pieces to support the family through pregnancy, birth and beyond.
“It’s scary being sent to a fetal center, and there’s a fair number of patients who have no idea why they’ve been sent — they just know something is abnormal with their baby,” medical director Dr. Chris Buchanan said. “So just being able to provide more information, and accurate information, I think brings a lot of comfort to patients.”
Often, the babies they see need close monitoring during pregnancy and plans for specialized care after birth, Dr. Buchanan said, but some patients also require interventions in the womb. The team recently helped a patient whose unborn child had fluid building up in the chest around the lungs. They first tried draining some of the fluid, but it quickly returned. Then, they were able to successfully place a shunt in the left side of the baby’s chest to continuously drain the fluid, Dr. Buchanan said.
Mental health care for the parents is also a priority, Dr. Buchanan said. The All of You Matters program works with Fetal Care Institute families to provide free counseling and mental health support services. Families also receive support from the Footprints Program, a program for medically complex children, if needed.
“We try to optimize things as much as we can for the baby and do whatever we can for the parents,” he said.
Fetal Care Institute program coordinator Katie Francis was part of the institute’s founding team in 2009, when the institute was one of just a handful of centers in the world offering that specific kind of care for unborn children. A parishioner at St. Gerard Majella in Kirkwood, she sees her mission as “treating people like Jesus would treat them. That is always in my heart — to treat everybody with respect, with kindness and empathy. Our moms and dads are facing really scary things, so I just protect them in any way I can and help advocate for them.”
“Just being able to walk with them — it’s an honor to be part of their lives during a really hard time,” she said.
For Leah and Brett, the hour-and-a-half drive to the Fetal Care Institute from their home in Pana, Illinois, was becoming more frequent as baby Atlas’ due date approached — but it was more than worth it, Leah said.
“I feel like I’ve been able to enjoy (my pregnancy) instead of worrying,” she said. “Obviously I’m still worrying — there’s a lot of unknowns — but I didn’t even want a baby shower when I first found out, and now that I’ve gotten comfortable, I’m going to have a baby shower, and I’m having a relatively normal pregnancy.”
The couple had already toured the The Dana Brown Neonatal Intensive Care Unit at SSM Health Cardinal Glennon and met the surgical team who will repair Atlas’ abdomen after he’s born.
“It’s nice that the same people that cared for me will also be overseeing him, because I feel extremely taken care of, and I know he’s in great hands,” Leah said. “I 100% have no doubt that they’re going to do everything in their power to make sure he’s OK, which gives me a lot of peace of mind.”
Fetal Care Institute
The SSM Health Cardinal Glennon St. Louis Fetal Care Institute treats babies facing complex medical diagnoses in the womb and supports the well-being of mothers and families. The institute brings together pediatric specialists from SSM Health Cardinal Glennon Children’s Hospital and maternal-fetal medicine specialists from SSM Health St. Mary’s Hospital, as well as as nursing, social work, genetics, diagnostic imaging, neonatology and more.
To learn more, visitssmhealth.com/cardinal-glennon/fetal-care-institute.
