There are more than 80 children currently waiting for life-saving organ transplants at Boston Children’s Hospital. The Pediatric Transplant Center team is grateful for the donors who give these kids a second chance.
Transplant recipients typically feel stronger and more energetic following transplant recovery. But returning to regular activities, sports and travel can be challenging. A few “transplant moms,” who’ve already been through the experience, share their wisdom and advice.
Charlene, mom to Brent, 19, liver transplant recipient
Planning a first vacation post-transplant is easier said than done. Charlene Newhall knows. And, she has a handful of advice, following a family summer trip to Arizona from their home in Maine:
- Work with your pharmacy to ensure you have enough medications.
- Research the closest major hospitals. “I was shocked to learn that two of the labs I called didn’t even check immunosuppressant levels.”
- Know your insurance coverage. “If we needed labs or anything medical we knew it would be out of pocket as our insurance is MaineCare. It’s a risk we took and we were prepared!”
- Call your transplant team to help you schedule immunosuppressants accordingly. “If there was one thing I stressed about, it was the time change with the dosing since Arizona is three hours behind us.”
- Prepare for your flight. “Masks are very important when flying. I was shocked at how many people flew sick. I wiped everything down on the plane with Lysol wipes before we sat down.”
- Don’t overly stress. “Make your vacation about memories, not about medical issues.”
In the foyer of the Geraghty house in Bedford, New Hampshire, 20 red heart-shaped balloons and a wall-to-wall banner welcome Erin Geraghty home from college. It’s not her birthday — she’s 21. It’s not her graduation — she’s a first-semester University of New Hampshire senior. And it’s not Valentine’s Day.
It’s her 20th year with the same heart.
Born with idiopathic dilated cardiomyopathy — a condition that causes the heart to pump blood inefficiently — Erin received a heart transplant at Boston Children’s Hospital when she was just 1 year old.
Her sister Katie, two years her senior, remembers Erin’s frequent visits to the hospital. “We didn’t understand why mom wasn’t with us, but we knew it was important.” …
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. …