Holden's Story

The feeling in the doctor’s office is anxious. Apprehensive. Quiet. The doctor holds up a quick sketch of a heart, complete with valves and chambers and points to different spots with her pen, explaining the procedure. “Does that make sense,” she asks.

For parents Cheyanna and Justin, these doctor’s appointments are regular, but they will never be routine. Echocardiograms. Heart monitors. Pointing out the places on their son’s body that are tinged blue to nurses and doctors. These are the realities of caring for a child with a congenital heart defect (CHD).

Their 7-month old son, Holden, has already had one open heart procedure and Cheyanna and Justin are getting ready for his second. They’ve been fighting along with Holden since the moment he came into the world. Luckily, they haven’t had to fight alone.

Because of a first-of-its kind home-monitoring app, CHAMP® (Cardiac High Acuity Monitoring Program) created by researchers at Children’s Mercy, it was like Cheyanna and Justin had a care team right in their home.

Between appointments, CHAMP allowed Holden’s parents to securely submit updates and photos of Holden to the specialists at Children’s Mercy. This allowed his care team to monitor Holden’s condition multiple times each day.

Holden’s second open-heart surgery was a success and, today, he no longer needs the support of the CHAMP team. He has regular appointments with his care team to make sure his heart is stable and that he’s growing properly. His family recently celebrated his first birthday and a true celebration it was!

Love powers advanced medicine and makes our communities healthier. Programs like CHAMP are possible because of donor and community support.