Heart strong: Two families bond over shared challenges

Evan and West, both who have congenital heart disease, pose with Evan's brother in a kitchen
West (center), Evan (right), and Evan's twin brother, James (left), got to bond during a visit in early 2020. (All photos and video were taken before the coronavirus pandemic.)

Four years ago, Ali Marcus walked through the door of a coffee shop in Connecticut and met the woman who would soon become her close friend, Britt Sheiber. The two were meeting at the suggestion of a mutual friend: Britt had just learned at a prenatal visit that one of her twins would be born with a congenital heart condition, and Ali’s 4-month-old, West, was due to have heart surgery soon.

“The moment I walked in and saw Britt, I knew she would become one of my best friends,” says Ali. “We sat together for two hours and immediately bonded. I listened to her fears about her baby and told her about my experiences with the Heart Center at Boston Children’s Hospital. I told Britt she was in the best of hands, and assured her she made right choice. Since that time, we’ve been there for each other through everything.”

Evan and West, who both had heart surgery, compare their scars.
West (left) and Evan compare their heart surgery scars.

Beginning the journey: West’s complex heart

Ali’s own heart journey had begun at her 19-week ultrasound visit, when she and her husband learned their baby had an atrioventricular canal (AV) canal defect. This is a type of heart condition that includes holes in the heart and abnormalities in the valves within the heart. A series of conversations then led them to cardiologist Dr. David Fulton and cardiac surgeon Dr. Pedro del Nido and at Boston Children’s Hospital.

“A cardiologist we knew in Philadelphia said we shouldn’t consider anyone else,” says Ali. “So I called Dr. Fulton’s office in tears with so many questions and concerns and by the end of the call I knew we needed to travel to Boston for our son’s care.”

Their baby, West, was born at a Yale New Haven Hospital on November 13, 2015, and they scheduled surgery in Boston with Dr. del Nido for February 2016. But a few weeks before his surgery, West went into heart failure and the family rushed him to Boston. Coincidentally, Britt was also in Boston, giving birth to her twins, Evan and James.

“We were texting back and forth and were just there for each other,” says Ali. “It was so wonderful to have that added support during such a difficult time.”

Evan, West, and James sit in boxes while holding balloons. Evan and West both had cardiac surgery.
The boys had a chance to bond during their month-long visit.

During West’s six-hour surgery, Dr. del Nido discovered that not only was West’s AV canal much more complex than originally thought, but he also had heterotaxy, a rare, complex condition where the heart and other organs are not formed correctly or are in the wrong position in the body. West had several spleens, some intestinal issues, and two left atria (the top chambers of the heart) instead of a left and right atria. 

“We will always be grateful for Dr. del Nido and Boston Children’s. Everyone we encountered on our path there — every doctor, nurse, and administrator — felt like part of our family,” says Ali. “I’m also grateful that the experience has brought me Britt as a best friend. She has a longer road ahead of her, but no matter what, I will always have her back.”

Evan’s single ventricle heart

Like Ali, Britt and her husband learned of Evan’s single ventricle defect heart, hypoplastic right heart syndrome, early in her pregnancy. They reached out to several major children’s hospitals in the Northeast.

“One hospital told us there was no hope for him, and another told us he would need a transplant at birth,” says Britt. “But when we met with Dr. Rahul Rathod from Boston Children’s, he was hopeful, and said we might even be able to skip the first surgery.”

During Britt’s pregnancy, Britt and her mom drove up to Boston every two weeks to see Dr. Rathod, while being overseen by the team at the Maternal Fetal Care Center. “We moved to Boston at 32 weeks in case the twins were born early, and I gave birth on my birthday,” says Britt. “The best gift was that Evan did get to skip his first surgery. I feel so grateful we ended up in Boston.”

When it did come time for Evan’s two open heart surgeries with Dr. Aditya Kaza, a Glenn surgery, in September 2016 and a Fontan surgery in March 2019, her friend Ali was there for her.

“I was worried about the surgery, but Ali prepared me for everything,” says Britt. “She told me Boston Children’s handle the most critical cases. They do this every day, it’s their job. That made me feel so calm.”

Both surgeries went well, and he was out of the hospital within a week after each. “After his Glenn surgery, his energy improved, he was eating more and gaining weight,” says Britt. “But after the Fontan, he is something else. He’s a maniac, just like his twin, James, and he weighs a pound more. Of all my kids, he’s the happiest, and he has so much empathy for other people.”

Three boys hug in their pajamas in a kitchen. Two had open heart surgery.
“Watching them running around Britt’s kitchen was a bit surreal for us, knowing what they had been through.” – Ali, West’s mom.

Staying strong together, and apart

In late 2016, just six months after West’s surgery, Ali and her family moved to Luxembourg for her husband’s work. “It was an amazing opportunity and experience, but there was only one pediatric cardiologist in the whole country, so I was on email nearly every day with Dr. Fulton, just checking in,” says Ali.

She also kept in constant touch with Britt, and in February of this year, flew back to Boston with West and his sister Amelie for an appointment with Dr. Fulton, just before the coronavirus pandemic hit. “We stayed with Britt and her family in Connecticut for a month. It was an incredible visit, and Evan and West bonded immediately. They were literally comparing their heart scars every day and calling each other ‘heroes.’ They were inseparable. And watching them both running around Britt’s kitchen was a bit surreal for us, knowing what they had been through.”

Their sons’ heart journeys have also inspired both Ali and Britt to give back to other heart families. Britt has helped raise more than $250,000 for the work Dr. Rathod is doing to help kids with single ventricle defects, and Ali helps other parents advocate for the best heart care for their children. 

“When you have a sick child, you see a part of life that other people don’t see,” says Ali. “When you’re in the waiting room with other heart parents, it’s silent most of time, but there’s this unspoken bond. As parents of these kids, we need to be there for each other. Britt and I both realize how lucky we’ve been to get the best care possible for our kids at Boston Children’s, and now we try to give back as much as we can.”

Learn more about the Heart Center.

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