At the Pediatric Heart Center (PHC) of Hasbro Children’s Hospital in Providence RI, we offer an array of services to complement the medical care of children with heart disease. Our team engages in programs and community events throughout Southern New England. The Hasbro Follow Your Heart Camp is the cornerstone of our outreach, helping children with heart disease understand their condition while gaining confidence and enjoying camaraderie with peers. Our cardiac psychology program, active social work support, and transition program are all in place to assist patients and families with all aspects of pediatric heart disease.
About 5 years ago we expanded our efforts to include support for the parents of children with congenital heart disease. In collaboration with the Southern New England (SNE) Chapter of the American Heart Association, the Heart Center rolled out a “Parent Support Group,” where parents or guardians of children with heart disease gather quarterly over coffee and dinner. Led by Odessa Holt, LICSW (Pediatric Heart Center Social Worker), Laurie Stephenson (AHA Board member and CHD survivor), Ashley DeSimone (AHA Support Group Coordinator and Director of SNE Heart Ball), and Brett Goudie (PHC Cardiologist and AHA SNE Board Member), the group has witnessed the power of peer support for parents who at times feel very isolated and fearful about their child’s condition. As a team, we provide guidance and support to the parents as they chat about their battles, coping strategies, and daily struggles with repaired or palliated disease. We had found that without this structure, parents seek camaraderie and discussion via social media or online groups. In this setting, the discussions are infinitely more productive and positive with guidance from a medical team, around a table, with good food, and while their kids are home sleeping. Most families who gravitate to this group have children with severe CHD, typically palliated single ventricle physiology. From the connections made during these meetings, parents have been inspired to give back to the CHD community.
Below is a picture from a recent coffee chat, showing several moms with Odessa (2nd adult from left). Mia Toro (2nd from right), whose son has truncus arteriosus, is a high school teacher in North Kingstown, RI. Her students were inspired to support CHD survivors, and designed personalized capes that group parents took home to their “Little Heart Heroes.” For more information on our Parent Support Group, please contact Ashley at Ashley.firstname.lastname@example.org.