The cookies for Dean Andersen’s welcome-home celebration were decorated with “#300,” fitting for the two-year-old who, just six weeks earlier, received the 300th heart transplant performed at Boston Children’s Hospital.
“Dean does things in his own time and in his own way,” says his mom, Janet Andersen. “His transplant was no exception.”
The Boston Children’s Heart Transplant Program performed its first transplant in 1986, and this May marked the program’s 30th anniversary. Dean’s transplant in June was yet another reason for celebration.
“Milestones like these are not accomplished without our amazing multidisciplinary staff, whose unending commitment and dedication provide an incredible model of excellence; the families and their children, who have taught us so much about resiliency, love, and true spirit; and lastly, the donor families, who in their worst hours of loss, could see through to the needs of another child and family to donate the gift of life,” says Dr. Elizabeth Blume, Heart Transplant Program medical director.
A failing heart
Dean was diagnosed with a congenital heart defect while Janet was still pregnant. When Dean was born, he was found to have a more complex, rare type of congenital heart disease, which included corrected transposition of the great arteries with pulmonary atresia and atrioventricular canal defect. This meant his heart was on the wrong side of his body, the two main arteries leaving the heart were reversed, one of those vessels was not formed normally, and there was a large hole in the middle of his heart. Although a fraternal twin, his brother Lou was unaffected.
“After his shunt in the first week of life, his doctors told us that at about nine months to a year, Dean would need a complex biventricular repair including switching the atrial blood flow, closing the hole and a conduit to provide blood flow to the lungs, essentially to reconstruct the entire heart,” Janet explains. “And that’s what we geared up for in the first year of life.”
Dean went into the surgery healthy, but he never fully recovered. “It just wasn’t enough to help his heart,” says Janet. …
An organ transplant is a life-changing event extending far beyond the operating room, the clinics and the hospital walls. Read about five children, one young adult and their families, whose lives were forever changed by the Pediatric Transplant Center at Boston Children’s Hospital.
Lydia’s liver transplant, a mom’s gift
Dawn Cavanagh gave her daughter life twice — first when she was born and, again, when she gave 13-year-old Lydia a piece of her liver last summer. The donor-approval process, which occurs with Boston Children’s partner Lahey Hospital & Medical Center, required hours of medical screening, including an interview with a social worker, who asked if Dawn expected anything in return for being Lydia’s liver donor. “And I said, ‘Of course I expect something,’” explains Dawn. “’I expect her to live a long and happy life, and I expect her to be with me for a long time.’”
More than a year after her liver transplant, for Lydia’s birthday, Aug. 1, the Cavanagh family went on Lydia’s Make-A-Wish trip, a Disney cruise to the Bahamas. “We had so much fun,” says Dawn. “She’s a happy kid. She has dreams. She wants to be a transplant nurse, and she wants to work on 10 South at Boston Children’s Hospital.” …
Nearly six months following a heart-lung transplant, Nicole Kouri makes a triumphant return to school, alongside her twin sister Isabella. It was a pact she made with her Dad back in August of 2015, while her friends were lying by the pool, soaking up the final days of summer, and Nicole was lying in a bed at Boston Children’s Hospital.
14-year-old Nicole was born with a ventricular septal defect (VSD) — otherwise known as a hole in the heart — and pulmonary hypertension, a serious condition associated with VSD that makes it difficult for blood to flow properly through the lungs.
Being sick was Nicole’s “normal.” …
Tina Medina was not a sickly child, yet she grew up knowing something was physically wrong.
She had difficulty keeping up with the other kids in her sixth-grade class and couldn’t run without becoming breathless. Local physicians near her home in Moriah, New York, shrugged it off as asthma — until Tina’s heart stopped twice during a routine appendectomy. “I was told I had a severe heart condition and needed to see a cardiologist right away,” she says.
At 15, Tina was diagnosed with restrictive cardiomyopathy, a rare type of cardiomyopathy that causes the heart muscle to become stiff, making it difficult for the ventricles of the heart to properly fill with blood. Three years following her diagnosis, now a college freshman on her way to Syracuse University, she became severely ill with multiple episodes of congestive heart failure.
“The doctors I was seeing in Burlington referred me to Boston Children’s Hospital,” she says. “It was time to look at getting a heart transplant.”
Tina was listed for six months. She was in the cardiac intensive care unit at the University of Vermont Hospital in Burlington when she learned a heart had become available. “I had no perspective that this was a danger, or that this was a huge deal. I looked at it as, I am finally going to be able to run, be able to breathe and not be sick.”
Boston Children’s nurse practitioner, Patricia O’Brien, CPNP, vividly remembers standing in her kitchen, telephone in hand, scrambling to arrange a flight from Burlington to Boston. “We had a plan in place but it fell through, so we were desperately trying to figure out a way to get her here, and we did.”
Tina’s surgery was performed on Aug. 27, 1992. She was the 22nd heart-transplant patient at Boston Children’s, which performed its first cardiac transplant 30 years ago. …