Healthy hearts reunite with caregivers

September’s Heart Reunion provided patients and their families an opportunity to reconnect with one another and members of their care team.

Healthy hearts reunite with caregivers click to enlarge The Williams family.

By: Morgan Noelle Smith, student of the UNC School of Media and Journalism

The UNC Children’s Heart Center hosted an event on Sept. 12 that tugged on the heartstrings of all those in attendance; literally. Almost 200 families of children receiving specialized heart surgery gathered at the Heart Reunion to reunite with other heart families and their caregivers.

One of those parents in attendance was Lauren Williams, the mother of 2-year-old Benji, who has already undergone two open heart surgeries and is on schedule to have his third open heart surgery next summer.

Williams’ son was born with multiple critical heart defects that prevented his right ventricle from developing due to his pulmonary valve never opening. The medical plan to address his defects and give him a chance at life will make him a single ventricle baby—basically he will have half a heart.

“Tomorrow is never guaranteed for anyone, but heart families are reminded of that every moment of every single day,” Williams says, reflecting on the past two years of her son's journey. "Benji reminds many that the next breath—or next beat—may not ever come, but he continues to march on, the only way heart warriors know how."

When Benji was born, there was little chance for his survival given one of the diagnosed heart defects. Williams says the care from UNC Children's has given her two years with a boy who never should have lived.

About 200 children receive surgery to correct congenital heart defects at N.C. Children’s Hospital each year. The Heart Reunion was created to enable patients and their families to interact and share stories with one another.

The event was filled with games, crafts, and an array of heart-themed treats. Parents of patients watched their children run, play, and be active, while patients were able to interact with other children facing similar health challenges. 

Benji's Heart Doctors
Benji with his favorite heart doctors, Drs. Michael Mill, Jennifer Nelson, and John Cotton. (Click to enlarge.)
“I know [the surgeons] carry such heavy burdens on their shoulders every day.  They do not always get to deliver good news,” says Williams. “It is so important and vital for their spirit and their mental health to see these kids running around, just being kids and seemingly so healthy.”
 

The UNC Children's Heart Center team has hosted the Heart Reunion annually for 17 years but took a hiatus last year due to a lack of funding. A generous donor—the father of a former patient, now a college sophomore—sponsored this year's event.

Williams says the reunion had a nice turnout but fewer attendees than she had anticipated. She states that more families should consider coming to events such as these, because they gives families hope, foster relationships between families who share similar stories, and can help develop friendships between peers who understand.

“Seeing older kids there with similar conditions as my son gives me hope that I will not outlive my child,” she says. “There were faces of health, strength, tenacity and fortitude—the same qualities I see in my son every day. It strengthened my resolve fight just as hard against congenital heart defects as these incredible heart warriors.”