Sam and Addie: A Heart Story

When Addie was 5 years old, her parents Kristine and Shawn learned that she would need her first open heart surgery for a left pulmonary sling. They were terrified, and felt unsure of the path ahead.

The next day, at an unrelated event, Addie's parents spotted a little boy wearing a CHD T-shirt. They introduced themselves, and met Sam and his family. Although Sam was still a baby, he was already a veteran heart warrior. He had undergone multiple surgeries for his single ventricle disease, and was still smiling on the other side.

Sam's mother, Anna-Mary, explained that she was a leader in a local congenital heart defect advocacy group: It's My Heart New England. Anna-Mary connected Sam's parents to the group, and provided support for them as they prepared for Addie's surgery.

Addie went in for surgery shortly after meeting Sam. She was scared, but felt better knowing that she was not alone, and that many other children had been through similar experiences. Her parents felt supported by their new community of congenital heart defect families.

Addie's surgery was successful, and she was soon back to playing and learning. Her buddy Sam visited her in the hospital room, and their parents took pictures of the two little heart warriors smiling together on Addie's bed.

On the final day of the summer program, all the participants put on a show for their proud families, demonstrating everything they had learned.

As Addie beamed at him, Sam proudly mounted his horse, rode around the ring, and even demonstrated jumping and trotting. Both sets of parents looked on from the sidelines, watching the amazing things their kids could do.

Raising a child with a heart defect can be hard, and no one should do it alone. When families feel supported and seen, they do better. As with Addie and Sam, many patient relationships last for years or decades, with families taking turns lifting each other up, as times and circumstances change.

We urge you to reach out and find your community. The congenital heart defect community is wide and welcoming, and there is a place for everyone within it.

We can't get enough of this dynamic duo. If you want to see more of Sam and Addie, scroll down for more photos and a video.

Do you have a heart story that you want to share? We would love to hear it! Email us at CNPschedulingandquestions@childrens.harvard.edu

Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their local care team.