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.” …
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. …
As a varsity football and lacrosse player, 17-year-old Simsbury, Connecticut native Danny Deitz was used to pushing the limits of his physical endurance. No doubt the competitive spirit was passed down to him from his father, Terry Deitz, a retired U.S. Navy pilot and two-time Survivor contestant.
But last spring, Danny became concerned about a mysterious decline in his health. Plays that were once second nature became strenuous, and he started to struggle with breathing during activity. Eventually, Danny felt weak just walking up the stairs of his high school. He was in heart failure — and about to face the toughest summer of his life.
Unbeknownst to Danny and his family, he had a rare genetic form of cardiomyopathy, a disease of the heart muscle. With his family’s support and care from an expert team of cardiologists, nurses and cardiac surgeons at the Boston Children’s Heart Center, Danny was able to regain strength, return to his community and receive a heart transplant.
Learn more about the Cardiomyopathy Program at Boston Children’s Hospital.
Learn how this journey has inspired Danny and his family to help others with cardiomyopathy and advance heart disease research.
When four-year-old Alina Siman was waiting for a heart transplant in 2011, she had to stay at Boston Children’s Hospital for a total of five months. Alina had suffered from severe heart failure and was building strength on a Berlin Heart, a mechanical device that temporarily takes over the heart’s pumping functions.
Alina received her new heart on February 28, 2012. Her mother, Mary Jane Siman, shares what she learned about staying positive, active and entertained while you’re stuck in the hospital for a long time.
“These few tips were created with the help of the entire team that worked with Alina: doctors, nurses, social workers and all the great people around her,” says Mary. …