Long Island middle school teacher Carole Going texts her student Jessica every day. Even just a simple exchange of “How are you feeling today?” and “Good, thanks!” can calm Going’s nerves. “I didn’t know her very well before the event happened,” she says. “We only had eight classes by that point.”
A month and a half ago, Jessica was in science class when she suffered a sudden cardiac arrest.
Going says it was her co-teacher, Ann Marie Carlson, who first noticed Jessica appeared weak: “She started to ask ‘Are you OK?’” but couldn’t even get all the words out before Jessica fell back on the floor.”
In recent years, the Boston Children’s Hospital Heart Failure team has made significant strides in slowing the progress of heart failure in children. In some cases, disease progression has been slowed enough for the patient to be taken off of the heart transplant list for being “too well.”
The following is part two of a four-part series featuring Heart Center patients who were once listed for transplant but were removed thanks to successful medical management of his or her heart disease.
Maverick Chenkus was born with hypoplastic left heart syndrome (HLHS), a very serious heart condition in which the left side of the heart is underdeveloped.
Soon after birth, Maverick had his first open-heart surgery but then developed heart failure. He spent his first 8 months fighting for his life at a hospital near his home in New York. Doctors there told his parents, Nikki and Charlie, their son would need a heart transplant in order to survive. But the doctors refused to place Maverick on the heart transplant list. …
Over the past few decades, more and more children with congenital heart defects have been receiving life-saving surgery soon after birth. As surgical techniques improve, some children who would have died within the first few weeks of life are able to survive — but many still have residual heart failure. Transplant is often the optimal therapy for such patients, but the number of hearts available to transplant has not changed much over the last several years.
“The number of patients listed for transplant is much greater than the number of donor hearts,” says Dr. Elizabeth Blume, director of the Heart Center’s Heart Failure program. “Due to this limitation, we’ve dedicated an entire service to optimizing care for children living with heart failure.”
In recent years, the Heart Failure team has made significant strides in slowing the progress of heart failure in children. In some cases, disease progression has been slowed enough for the patient to be taken off of the heart transplant list for being “too well.”
Each Monday for the next four weeks, Thriving is highlighting a very special Heart Center patient who was once listed for transplant, but was removed from the list thanks to successful medical management of her heart disease.
Kenny Laferriere has been working for the New England Organ Bank for eight years, and in January 2016, he will celebrate the 15th anniversary of his heart transplant at Boston Children’s Hospital.
Kenny says he was drawn to a career that would allow him to give back. “I do a lot of talks at the Organ Bank for new hire orientation to give people some perspective on why we’re here. I’m living proof transplantation works; it saved my life and allowed me to be with my family. Eventually, it allowed me to create new life and start a family of my own.” (Kenny has a four-year-old son, Kameron, and another son on the way).
Kenny emphasizes the ripple effect of every transplant; it doesn’t save just one life — it touches many others. …