Accepting kindness and happiness: Ways Spencer’s family navigated his heart transplant

Spencer Brock and his family recently vacationed in Ireland. They caught up with aunts, uncles, and cousins, and Spencer enjoyed visiting playgrounds, an amusement park, and a zoo.

It was a dream-come-true trip in many ways. In October 2024, only six weeks after he was born, Spencer was diagnosed with restrictive cardiomyopathy, a severe disease that can cause heart failure. He needed a heart transplant. It was devastating news for his parents, Eben and Shannon, and the start of a nine-month wait for a donor heart.

“When we found out he needed a transplant, it was like, ‘How in the world did we end up here? How is this happening to us?’” Shannon recalls. But that was then. After Spencer’s successful transplant procedure and recovery at Boston Children’s, the family is thrilled to be back home in Vermont. Eben and Shannon love watching a healthy Spencer get “giggly” over nursery rhymes and Disney movies that go big on music. 

With him feeling well, they knew they could finally take a vacation. They also have had time to reflect. To help other families whose children are receiving critical heart care, Shannon shares four ways how she and Eben managed Spencer’s heart transplant care.

It’s not easy, but try to take it one day at a time

The perspective helped Shannon and Eben eventually cope with the shock of Spencer’s sickness, the family’s early struggle to get a diagnosis, and then the wait for a new heart.

“Early on, Spencer was intubated for 10 days, and I realized how difficult and challenging the wait was going to be,” Shannon recalls. “But eventually, things normalized. I knew then the best approach was to not worry about the future. Many things are going to happen from point A to point B, and you have to manage them in that moment. They’re not all going to be bad.”

You are not alone; lean on your child’s care team

It got easier for Shannon and Eben to stay in the moment because of the expertise of Spencer’s care team: which included cardiologists Dr. Elizabeth Blume and Dr. Tajinder “TP” Singh, cardiac surgeon Dr. Francis Fynn-Thompson of the Heart Transplant Program, and the many nurse practitioners and nurses of the Acute Cardiac Care Unit and Cardiac Intensive Care Unit. 

Shannon and Eben learned to trust the clinicians, who made their family feel comfortable as they adjusted to a long-term hospital stay. Many people and moments stand out, but Shannon will never forget the thoughtfulness of Dr. Kathryn Restaino, a cardiologist who was Spencer’s care continuity provider. Dr. Restaino always asked if the family needed anything and always delivered when they did. 

It’s okay to embrace happiness

Shannon and Eben didn’t like leaving Spencer’s bedside. But on Valentine’s Day, Spencer’s nurses wanted the couple to enjoy the holiday. The nurses bought them dinner from a local restaurant and set up a makeshift dining room in a conference room. 

“It had balloons and everything,” Shannon says. “It’s okay to enjoy moments like that, even though you’re in this unfortunate circumstance. Spencer rolling over for the first time or saying ‘mama’ for the first time allowed us to enjoy what matters. It’s okay to be happy, even though it’s not happening in a traditional way.”

Care continues after surgery but so can the pursuit of a ‘normal’ life

As with any organ transplant patient, Spencer needs to take immunosuppression medication throughout his life. He sees rehabilitation and therapy specialists back home and is quickly reaching developmental milestones. He’s walking and climbing things with confidence and is “really taking off,” Shannon says.

“I hope we’re able to get to a place of a ‘true normal.’ Whether it’s going to preschool or Spencer playing soccer. The transplant team always said to us the goal is to live the life we want and give Spencer all of the opportunities we can.”

Learn more about the Heart Transplant Program and the Pediatric Transplant Center.