First time parents participate in clinical trial for daughter with cystic fibrosis

First-time parents Andrea and Brian Boman were blindsided by the news that their baby girl, Hadley, was born with cystic fibrosis. There was no history on either side of the family of the hereditary disease, which causes thick, sticky mucus to form in the lungs, making it difficult to breathe; and in the pancreas and other organs, interfering with digestion.

The Bomans discovered Hadley’s condition could also adversely affect her physical development.

Then they learned through Via Christi’s Cystic Fibrosis Clinic about a trial study of a specially enriched infant formula being tested through Via Christi Research. By agreeing to be part of the study, Hadley received infant formula during her first year, as well as frequent health checkups, and intensive mental and motor skill screenings to track development — all at no cost to the family.

The Bomans, who live on a ranch near Burrton, were thrilled that the study was available less than an hour’s drive from their home.“I think it’s great to get to participate in studies like this,” says Andrea. “It’s the best way doctors can learn about new and better ways to treat patients, like Hadley.

“And if there was a chance it could help her — or some other child — then why not try it?”

When the couple’s second daughter, Harper, was born nearly a year ago with cystic fibrosis, the Bomans let the Via Christi Research staff know they’d be happy for her to be considered for future trials, too.

To this day, the Bomans don’t know whether Hadley received the enriched formula or a still-beneficial placebo, but they know she has stayed healthy and continues to gain weight as she should four years after completing the study.

Now she’s a happy and, from all appearances, healthy cowgirl who loves her stick horse, Pink Star, and practicing her roping skills.

“Participating in the study was worth it for us,” says Andrea. “And, if another trial came along, I’m sure we’d want both of our girls to be part of it, too.”

 

 

 
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