Nineteen-year-old Joshua has been a patient at Boston Children’s Hospital his entire life. Born with hypoplastic left heart syndrome, a congenital heart disease, Josh required five open-heart surgeries along his journey, and on Aug. 4, 2014, he received a heart transplant. Four months later, family members gathered for Thanksgiving dinner, each giving thanks. When it came time for Josh to speak, he said, “I am thankful for my new heart, and I am thankful to give it a very good home.”
Josh’s mom Barbara shares the family’s extraordinary journey.
When the phone rang at the Natale family home in Loudonville, New York, during the early morning hours of Jan. 12, 2013, Nathan Natale knew exactly what it meant.
“My little sister had someone sleeping over. And I was like, ‘hello parents of friend, we gotta go.’”
The phone call was from Boston Children’s Hospital. A donor match had been found. The Natales quickly packed, hopped in the car and began the three-hour journey to the hospital for Nathan’s kidney and intestine transplant. But Nathan’s transplant journey didn’t begin here. It began five years earlier following a routine surgery. …
Eighteen-year-old Maggie Mansfield, a communications major at Boston College, is a two-time double-lung transplant recipient — once, at age 4, due to a condition called pulmonary hypertension in which blood pressure in the arteries of the lungs is abnormally high, and again at age 7, when her body rejected the first transplant. Since then, Maggie has remained relatively healthy due in part to her strict medication regimen.
“Timing is the most challenging part of taking my medications,” Maggie says. “As I get older, I get busier. It’s not always easy to stop what I am doing and take my pills, but I try to keep my timing the same so I don’t throw off my labs.”
Medication adherence is critical to the long-term health of an organ recipient. But taking upwards of 20 medications per day is often overwhelming, particularly for adolescents and young adults as they become more independent.
“I equate it to learning how to drive a car,” says Kristine McKenna, PhD, a psychologist in the Boston Children’s Hospital Pediatric Transplant Center. “We don’t just toss over the keys. There are a lot of steps to learning — getting a learner’s permit, practicing driving with a parent. And, again, we don’t just send them out to drive across the country when they get their license.” …
When a vital organ is damaged beyond repair, the only path to health is transplantation — replacing the dysfunctional organ with an organ from the body of a donor. The experience can be physically, psychologically and emotionally trying for patients and families, especially when the patient is a child or teen.
Experience Journal, a project of the Boston Children’s Hospital psychiatry program, interviewed numerous children, teens, young adults and parents about their experience through the transplant journey — from accepting their diagnoses to waiting for the donor organ to connecting with the donor’s family.
This letter was written on Christmas Eve by the mother of a transplant patient to the family that donated a kidney to her son:
This is the first Christmas greeting I am sending. It is also the most important note I will ever send. I guess the thing that makes this so strange is that you are someone who I may never know. …