When Aidan was just 8 months old, his parents Patrick and Tavina received shocking news—their son had hypertrophic cardiomyopathy, a rare but serious disease that affects the muscle of the heart. Given his young age and severity of his condition, the early prognosis was bleak.
“Things didn’t look good at first,” remembers Patrick. “We were steeling ourselves for the real possibility that Aidan wouldn’t make it to see his first birthday.”
But, heart condition or not, little Aidan was a fighter, and with minimal medical management his condition stabilized. Over the years, he grew stronger and was seen periodically by doctors from Boston Children’s Hospital’s Heart Center who monitored his heart health. However, even though Aidan had fared much better than originally hoped, there was never any doubt that his condition would worsen with time—when his doctors spoke about a heart transplant, it was in terms of when not if.
A turn for the worse
In November 2012, with Thanksgiving just a few days away, the last thing on 10-year-old Aidan’s mind was a big turkey dinner. He had suddenly gotten sick—vomiting, shivering and feeling very tired. His worried parents took him to their local hospital where he was admitted and treated for a virus. After six days in the hospital, Aidan was feeling better and was scheduled to go home the following day when his health took a dramatic turn. That night, Aidan suffered a stroke, which doctors believed may have been triggered by blood pooling in his heart, likely the result of his left ventricle not being able to pump with any real strength.
Given the circumstances, doctors felt it was best that Aidan see his Boston Children’s cardiac team. Once the family had arrived in Boston, it was clear that the decision was a wise one—within minutes of entering Boston
Children’s Aidan was identified as being in severe heart failure and was rushed to the cardiac intensive care unit.
In the coming weeks, Aidan’s health stabilized with strong intravenous medications, but he never returned to full strength, making the hours of physical and occupational therapy required to regain full muscle movement after his stroke very difficult. The longer he spent in the hospital the more everyone realized that Aidan would need a new heart soon. As preparations were made for the transplant, the family was approached by Boston Children’s cardiologist Christina VanderPluym, MD, to discuss fitting Aidan with a ventricular assist device (VAD) that would not only sustain his health while he waited for a donor heart to become available, but could also vastly improve his quality of life while he waited.
A new lease on life
VanderPluym explained to Patrick and Tavina that Boston Children’s was working with a new generation of portable ventricular assist devices (VADs) that continuously pumps blood from a failing heart to the rest of the body. Approved for use in adults, but not specifically for children, Aidan would be one of the smallest patients to receive the device in the United States through a practice known as “off-label” use. (Learn about the Boston Children’s patient who became the first child in the U.S. to go back to school with this device.)
The pump is implanted directly into the heart with only a small power cord exiting the body, allowing Aidan to resume all types of activities, including spending time with friends and family at home and school, instead of being confined to a hospital room. His parents were receptive to the idea of Aidan using the device, especially considering the sense of normalcy it would provide their family as they waited for a heart to become available for their son.
“Without the VAD, Aidan would still be in the hospital, which would have split our family down the middle,” says Tavina, who stayed at their home in Rhode Island to care for the couple’s other son while Patrick stayed with Aidan in Boston during his three-month hospital stay. “The time we’ve already spent apart was hard. I really can’t overstate how much more difficult waiting for Aidan’s new heart would be if we weren’t able to all be together.”
But in addition to providing stability at home, the VAD offers Aidan time outside the house. He recently finished the fourth grade, attending class three days a week, which gave him enough time to rest, visit his care team at Boston Children’s and head off to school to see friends and teachers—important academic and social activities for a boy his age.
“Being in school to learn and interact with friends has been huge for him, and has had a very positive affect on his health,” says Tavina. “I honestly can’t imagine he’d be as strong as he is if he was in bed all day instead of living his life.”
But its not just Aidan who benefits from the freedom afforded by the VAD. His parents say they feel remarkably better since their son was fitted with the device. “Being in the hospital everyday can be exhausting, even when you’re not the patient,” Patrick says. “It may not seem like much, but just being able to sleep in your own bed, at your house after eating a home-cooked meal makes waiting for a donor organ less stressful. It really gives your life a sense of normalcy that you don’t fully appreciate until it’s gone.”
Before sending Aidan home with the VAD, VanderPluym trained Patrick and Tavina on how to monitor and manage the device, which they found surprisingly easy. “When you have a child who is very sick, you have to become a participant in his care, learning how to monitor the VAD is just an extension of that,” he says. “It didn’t take long to become comfortable with it. I think both Tavina and I had it figured out after the first lesson.”
“It’s actually easier than using the TV remote,” Tavina jokes. “There are fewer buttons to deal with!”
The future ahead
With his school year wrapped up Aidan is excited for the summer, especially for his 11thbirthday, which falls in July. And while Patrick and Tavina know what they’ll be wishing
for when Aidan blows out the candles on his birthday cake, they’re still very grateful for everything they have.
“A new heart sure would make a great birthday present, but until that’s available we’re just glad to have access to the VAD because of the way its kept everything running so smoothly,” Patrick says.
“That and Aidan’s whole team at Boston Children’s,” Tavina adds, “We communicate with them on a daily basis, and we couldn’t have asked for a better or more attentive group of people to care for our son.”
To learn more about the Heart Transplant Program at Boston Children’s, including its use of VADs, visit their website.