Welcoming a new child into the world is often a time of immense joy and anticipation. However, for some families, this experience is overshadowed by unexpected medical challenges. Pediatric heart conditions can leave parents grappling with fear and uncertainty.
It's the reason Kathleen Cinelli, a Registered Nurse with UCSF Benioff Children's Hospital, started an innovative program called "Hearts at Home," creating a community of families and medical staff going through similar struggles so they don't feel so alone in their challenge.
As a traveling nurse in the Pediatric Cardiac Intensive Care Unit, Cinelli noticed a pressing need among families of children with congenital heart disease, who are overwhelmed with the stresses of surgery, recovery and the uncertainty of long-term care. Many are also faced with the reality of multiple hospital visits as their children grows and requires further procedures. From this need for connection and support, the Hearts at Home program was born.
"If I could figure out a way for us to professionally stay connected and create this community of families and caregivers that are serviced within the pediatric heart center, that it would kind of cut down on that stress and anxiety of returning back to the ICU because, you know, they are remaining connected with us. So that's why I created the Hearts at Home program so that our families could kind of feel connected to a community and feel more comfortable being within the pediatric heart center," Cinelli told KCBS Radio's Bret Burkhart on this week's episode of "As Prescribed."
The foundation of the Hearts at Home program lies in its ability to maintain open lines of communication between families and the hospital's pediatric cardiac team. After a child is discharged, families are invited to join the program voluntarily. They can connect with the team via an email address, heartsathome@ucsf.edu, where they are encouraged to share updates on their child's progress, send photos, and celebrate milestones such as birthdays, first days of school, or even holiday celebrations. This ongoing communication has proven to be a lifeline for many families, helping them feel more connected to the hospital community even after their child's treatment has ended.
For Cinelli and the medical team, Hearts at Home has been a rewarding initiative that offers more than just emotional support for families.
"Since creating Hearts at Home, we have this whole avenue of communication that we never had before. So we're able to see, more or less, the reason why we do this work, which can be so stressful and demanding at times. You get to see the fruits of your labor, the joy that came from the pain of this child being in the hospital for so long. So it's been incredibly rewarding to our staff," she said.
One of the standout aspects of Hearts at Home is its ability to create a sense of community among families who have faced similar challenges. The hospital has seen increased participation in events like the Congenital Heart Walk, a fundraising event that raises money for congenital heart disease research. Thanks to the program, the turnout for this event has tripled.
"We have more families than ever that show up to our Heart Walk, which is our community event of the year that raises money for congenital heart disease research. And then at that event, those families can kind of meet each other and talk about their experiences," Cinelli said. "And it really has grown so much in the last few years with the help of the Hearts at Home program that I'm really proud and also encouraged to see what more we can do with that."
As the Hearts at Home program continues to grow, Cinelli is excited about the possibilities of expanding the program to reach even more families and to continue fostering a sense of connection within the pediatric heart community.
Listen to this week's "As Prescribed" to learn more. You can also listen to last week's episode about how vaping really compares to cigarettes, here.
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“As Prescribed” is sponsored by UCSF.