Donor-funded program keeps young heart patients safe at home

Coming home from the hospital with a new baby will make anyone a little nervous. Bringing home a baby who was born with a single ventricle heart and who just had the first of three surgeries is an experience that can cause stress in even the most experienced parents.

Dana Hartman, NP, and the Riley Heart Center home monitoring program make this transition easier for Riley families. Dana has been a part of the Riley Heart Center team for more than 20 years, and with her experience and love of Riley families, she is integral to the home monitoring program. This life-changing and lifesaving program is supported by donor funds made available through Riley Children’s Foundation.

The highest risk for single ventricle heart patients, outside of the surgery itself, is between the first and second surgeries. When the program began in 2010, the mortality rate during this interstage time was 18 percent at Riley, similar to the national average. But the rate has since plummeted to 3.8% from the program’s beginning through 2019, and since 2016, the mortality rate has been 0%.

“We have strong data that shows that home monitoring helps babies survive,” Dana said.

The program began with sending families home with a binder of information. It is now available through a mobile app and provides families with easy-to-access tracking tools, a baby scale, and a pulse oximeter, as well as direct communication with Dana. Families are asked to record their baby’s heart rate and oxygen level once per day in the app. The program also implemented consistent follow-up visits in clinic, and provides helpful resources and guidelines for each child’s primary care pediatrician. This level of care is one example why Riley’s Cardiology program is ranked 6th in the nation among children’s hospitals by U.S. News & World Report and the top-ranked program for heart care in the Midwest.

As a part of the program, families can call, text, or video chat with Dana to talk through concerns about their new baby once they return home after their first surgery. This can be anything from low oxygen intake to a runny nose or rash. The support provided to families is exceptional; Dana is able to address and mitigate many issues immediately, which can keep families out of the hospital.

Many families keep in touch with Dana even after their child’s second surgery is complete, sending pictures and updates. “I love it, I never go away. I love doing this job,” she said.

The program initially began with babies who were born with hypoplastic left heart syndrome but continues to expand to patients with other heart diagnoses. Based on participant feedback, the program has grown to include family care packages, instructional and informational videos on the app, and a parent support group is under development.