A reunion of the heart: Grace and Amy bond through HLHS

At first glance, Grace and Amy have a pretty typical friendship: they joke around, cheer each other on, and keep in touch mostly through texts and FaceTime. But look a little deeper and there’s something extraordinary about their bond, or more specifically, how and where it began.

Grace, 22, and Amy, 21, were both born with hypoplastic left heart syndrome (HLHS), a rare and serious condition where the left side of the heart doesn’t fully develop and can’t pump blood effectively. They both received lifesaving cardiac surgery at Boston Children’s Hospital around the same time, but it wasn’t until almost a decade later while living an ocean apart — Grace in Massachusetts and Amy in Ireland — that they connected through a post on Amy’s Instagram account dedicated to her experience living with HLHS.

“I have the same heart condition as you,” Grace messaged Amy one day. That exchange sparked a kinship that grew as they swapped stories and discovered their times at Boston Children’s had overlapped.

“I asked my mom if she remembered Amy’s family, and she did,” Grace says of the day she and Amy made the discovery. That same day, she and Amy FaceTimed, setting in motion a reunion over a decade in the making. About a year after reconnecting, Grace traveled to Ireland to celebrate Amy’s 20th birthday.

Their story began before they met

Grace and Amy’s connection dates back to before they were even born. In 2003, their mothers were both referred to Boston Children’s Fetal Cardiology Program, which is now part of the Fetal Care and Surgery Center, after their prenatal ultrasounds revealed HLHS.

“We learned that Grace would need three open-heart surgeries and other procedures, but that [Boston Children’s] could try to fix it,” remembers Grace’s mother, Brenda. “That was the first time we were given hope.” Amy’s mother, Delys, learned at her 19-week ultrasound that Amy’s heart was missing its left side.

The new moms met through an online support group for families with children navigating serious heart conditions. One day, between appointments at Boston Children’s, Brenda and her husband, Chris, met up with Delys and Amy’s father, Noel, in the hospital’s lobby. Over the coming months, there were more meet-ups and playdates and shared advice about caring for medically complex babies.

“We would swap tips on everything — what we were feeding them, how we were sneaking in extra calories,” Delys says. “The heart moms were, and still are, our biggest support system.”

Lifesaving surgeries and lifelong bonds at Boston Children’s

Just days after they were born, Amy and Grace began a series of staged surgeries at Boston Children’s to treat HLHS. The first — the Norwood procedure, developed more than 40 years ago in the hospital’s Department of Cardiac Surgery — is a complex open-heart surgery that reconstructs the heart’s main artery and creates an alternate path for blood flow. It’s followed by two surgeries to help reduce strain on the heart and improve oxygen delivery: the Glenn procedure, which redirects blood from the head, neck, and arms directly to the lungs, and the Fontan procedure to connect the blood returning from the lower body directly to the lungs. This sequence of surgeries is carefully planned over the first few years of life to allow the heart to recover and grow between stages.

In the years since, Grace has stayed in contact with much of her Boston Children’s team, including Dr. Peter Laussen, cardiologist Dr. Gerald Marx, nurse Maura Harlen, cardiac surgeon Dr. Pedro J. del Nido, and cardiologist Dr. Wayne Tworetzky, who continues to monitor her cardiac function.

“I’ll be with Wayne until he retires,” Grace laughs.

After completing her surgeries, Amy and her family returned to Ireland when she was 7. The last time she saw Dr. Marx was at her final cardiology appointment before the move. She reconnected with him at 18. During a trip to Boston last July to visit Grace, Amy returned to Boston Children’s for the first time since childhood. She had lunch with Dr. Marx and met with Dr. del Nido — the first time she had seen him since she was 3 years old, when he performed her final surgery.

“It was incredible to have been able to see them and thank them,” Amy says.

Carrying their bond into the next chapter

Since reconnecting, Amy and Grace’s friendship has grown through the day-to-day realities of living with a heart condition, from managing medical care and physical limitations to dealing with the impact it can have on school, work, and friendships. Their mutual support continues as they move into the next phase of their lives: Grace is working as a special education paraprofessional, and back in Ireland, Amy is studying psychology while continuing her advocacy work for heart disease awareness.

“It’s been really amazing to watch them have somebody else who understands what they’re going through,” Brenda says. “That kind of connection is rare.” Amy puts it simply: “Not everyone understands what a heart condition is like, even as much as you explain it,” she says, looking at Grace. “They know you have it, and they know it’s really difficult, but they don’t understand it like you and I do with each other.”

Learn more about Boston Children’s Fetal Cardiology Program.