Children’s Mercy app brings doctors home, virtually, with babies born with heart disease

When Autumn Parkinson was 26 weeks pregnant, her doctor asked her to come back in for another ultrasound to make sure her baby’s heart didn’t have only one ventricle, a serious congenital disease called Hypoplastic Left Heart Syndrome (HLHS). Parkinson, who has two other healthy children, researched HLHS but didn’t dwell on it too much.

“The disease was so rare and severe that I never considered it would be in our future,” she says. “We thought maybe they just hadn’t seen the ultrasound properly.”

Four months later, after surgery and an eight-week stay at Seattle Children’s Hospital for her newborn, Job, she and her husband found themselves back home in a rural area of Tacoma, Washington, with a medically fragile infant who needed constant monitoring until his next surgery in six months. Parkinson knew from HLHS support groups she’d found online that most parents had to take painstaking records daily in a three-ring binder and phone them in to their doctors to watch for complications, and even then, as many as 25 percent of the babies would die before their second surgery.

But thanks to the vision of a technologically minded doctor and his team in Kansas City, Missouri, 1,900 miles away, Parkinson has been able to relax into the routine with the comfort of knowing her baby’s cardiologist and nurse are looking over her shoulder every day, via the cloud. An app conceived by Dr. Girish Shirali, a pediatric cardiologist at Children’s Mercy hospital in Kansas City, has already saved babies and made life easier for their worried parents, and now it’s expanding across the country and being contemplated for other diseases as well.

“We focused on this disease because it’s the one where we knew the outcomes were really bad,” Shirali says. “But it quickly became clear that there are plenty of other conditions we can use it for, too.”

Read the full story via Microsoft.

Learn more about the CHAMP Program at Children's Mercy.