By: Mona Shand
KANSAS CITY, Mo. – For babies born with certain heart defects, every second and every detail can be critical, and now a new app is helping families collect and instantly send potentially life-saving information to doctors. Each year, 3,000 babies in the U.S. are born with a single ventricle heart defect, which typically requires three surgeries to correct.
Dr. Girish Shirali, cardiology division director and co-director of The Ward Family Heart Center, Children’s Mercy, says nearly 20 percent never make it to the second surgery, in part because doctors can’t intervene quickly enough when things go wrong. He says the burden typically placed on families to monitor the babies and painstakingly record data by hand was time-consuming, inefficient and stressful.
“They have to be parents to this baby who has a chronic health condition, plus being parents to maybe their other children, plus running a household,” says Shirali. “I just thought, we should be able to do better with technology.”
Shirali helped develop and pioneer a new tablet-based app which, when used with a Bluetooth device, gathers and sends critical information and even video directly to the care team, and alerts doctors immediately when customized “trigger points” are reached. So far the app has been used with 17 babies, all of whom made it to their second surgery.
Shirali says this is not a case of technology replacing the human element, but rather enhancing it.
“The beauty of it is we’ve not lost a single baby,” he says. “That’s not just the app that’s doing the work; the app is just basically collecting the data. It’s the team. It’s a dedicated team that takes care of these kids. “
He sees broad application for this sort of technology when it comes to patients with chronic conditions that require constant monitoring from caregivers.
“It’s about survival, and it’s about really creating a mechanism for the surveillance of these patients that is more like a kinder, gentler way of monitoring them,” he says.
The app was developed with the support and collaboration of the Claire Giannini Fund and the Heart to Heart Network. The fund has also made it possible for 200 units to be distributed nationally.