Atrial septal defect (ASD) pediatric patient stories

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Heart2Heart: A legacy of mentoring

Alexa Horwitz and Eliot Greene have a lot in common. They’re both high school honor students. Eliot is his class president at Belmont Hill School, while Alexa is editor-in-chief of the school newspaper at Buckingham Browne & Nichols. Both are varsity athletes, even participating in similar sports—tennis for Alexa and squash for Eliot. They’re friendly, engaging and quick with a smile. And they’ve both undergone multiple open-heart surgeries at Boston Children’s Hospital, making them perfect candidates to pilot the Heart2Heart at Boston Children’s Teen Mentoring Program.

The program—currently available in Cardiology—matches high school or college students who were born with heart defects with patients currently being treated at Boston Children’s. It’s the first program of its kind involving face-to-face mentoring with both patients and parents. “The questions they have are the same questions we had,” says Alexa. “It’s easier to talk to someone who knows firsthand what you’re going through.”

That was the case 17 years ago when Alexa’s mother, Kasey Kaufman, learned that Alexa—still in utero—had an atrial septal defect (ASD), a congenital heart condition that occurs when there’s a hole in the wall between the upper chambers of the heart. “On the spectrum of heart defects, ASD is pretty fixable,” says Kaufman. “At the time though, it seemed so overwhelming.” Jane Newburger, MD, MPH, Boston Children’s associate cardiologist-in-chief—and Alexa’s doctor—suggested that Kaufman reach out to Leslee Greene, whose son Eliot, had recently gone through a similar operation.

Eliot was born with Tetralogy of Fallot, a condition involving four different congenital heart defects, which were repaired by Boston Children’s John Mayer Jr., MD—the same surgeon who would replace Eliot’s pulmonary valve 16 years later. “I called Leslee, and I just sobbed to her over the phone,” says Kaufman. “She was so incredibly kind. Just talking to her gave me back my hope and strength.”

Alexa’s ASD was repaired at 15 months, but when she was in fifth grade, a second surgery was needed to repair a moderate leak in her mitral valve. Boston Children’s Gerald Marx, MD, was able to pinpoint the exact location of the leak using echocardiography, allowing Cardiologist-in-Chief Pedro del Nido, MD, to repair it without replacing the valve. While Alexa was in the hospital, family friend Cheryl Toole, MSN, RN, nurse manager in the Boston Children’s NICU, visited Kaufman regularly. Toole’s daughter, Avery, had recently been born with critical congenital heart disease. A few years later, the roles were reversed with Kaufman and Alexa visiting with the Tooles while Avery was awaiting a transplant. After one of these visits, Alexa commented to her mother about how good it felt to spend time with Avery, because she remembered what it had been like waiting for her own surgery. She went home, sat down at her computer and typed up the proposal for Heart2Heart at Children’s.

Alexa sent the proposal to Newburger, and to Sara Conahan, director of Development for the Boston Children’s Hospital Trust, who had enlisted Alexa to speak at the Women in Medicine Luncheon a few years earlier. After a few trips back to the drawing board, a formal steering committee was formed in October 2010, consisting of Newburger, Conahan, Sue Reidy, MS, RN, from Nursing, Beth Donegan-Driscoll, MS, CCLS, director of Child Life Services, and Christine Rich, RN, MS, a nurse with the Center for Families.

With the program close to becoming a reality, Alexa knew it was more than she could handle on her own. She and Eliot had been crossing paths their entire lives, completely unaware of the support that Eliot’s mother had offered to Alexa’s mom 17 years earlier. They went to the same schools and even lived within blocks of each other until Alexa was 5, but since Eliot was a year older, they didn’t really know much about each other outside of their shared history of heart surgery. “One night, I got a Facebook message from Eliot, saying ‘Hey, we should volunteer at the hospital,’ ” says Alexa. “I sent a message back, saying, ‘funny you should mention it…’ ”

With Rich on board as coordinator, Heart2Heart at Boston Children’s entered its pilot stage with Alexa and Eliot as its first two teen mentors. Before they could meet directly with patients, both teens—and both moms—went through weeks of training on hospital policies and procedures, as well as a period shadowing Child Life to see how they interact with patients.

The first time Alexa or Eliot meet with a patient, a representative from Child Life sticks around to ease the transition. After that, if the patient’s family approves, they’re on their own, providing a confidant who knows exactly what the patients are going through, and answering questions kids may not feel comfortable asking their parents or clinicians. “A lot of kids want to know if it hurts when they take tubes out of your throat after surgery,” says Eliot. “When I say ‘I really don’t remember, so it can’t be that bad,’ they know I’m speaking from experience.” One patient was so appreciative of the time Eliot spent with him that he named his stuffed wolf after him. Another told his parents, “I want to do what Eliot does when I grow up.”

Alexa and Eliot have mentored patients as young as four years old. “The experience can actually be less intense with younger patients,” says Alexa. “They’re less likely to ask really tough questions than someone who’s older.” Some patients simply want to spend time with someone close to their own age, like the 14-year-old who told Alexa that the rainy afternoon they spent watching Avatar was the best part of his hospital stay.

With Heart2Heart at Boston Children’s proving to be a success in Cardiology, Alexa and Eliot have already drafted a proposal to expand the program. Just as their mothers passed a legacy of mentoring on to them, Alexa and Eliot are working with the steering committee on plans to begin recruitment and training of additional teen mentors this summer. “This program’s all about creating connections,” says Alexa. “I’d love to see it expand formally to other departments. Even more, I’d love to see it expand to other hospitals.” 

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

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