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.
A heart transplant for Dean
From September of 2015 through the remainder of the year, Dean was in and out of the hospital. And in January, the Andersens were told Dean would need a heart transplant.
“When we asked what the options were, Dr. Blume basically said, ‘It’s not that your child won’t make it to first grade healthy; [without a transplant] he won’t make it to first grade,’” Janet says.
At that point, Janet and her husband Pete made it their goal to get Dean strong enough and stable enough for transplant. They didn’t know if the heart would come in time — or if it would come at all.
“You just kind of take every day, like it’s going to be THE day, or you talk about other things besides his heart.”
Minutes became milestones
Six months later, on an evening in June, Pete was at the hospital visiting Dean, while Janet was at home in Marshfield, Massachusetts, with Lou. Janet received a call from Pete. “Everything is OK,” he exclaimed. “Everything is going to be OK!”
The fact that this was going to be the start of another journey, that he was going to get that chance, we felt unbelievable joy.
Pete had just learned there was a heart for Dean.
“I think I fell to the ground. It’s just an overwhelming emotion, especially if you don’t expect it to happen — ever happen,” Janet says. “The fact that this was going to be the start of another journey, that he was going to get that chance, we felt unbelievable joy.”
Janet packed her bags and headed to the hospital. The transplant team took Dean into the operating room at 4 in the morning, and by 1 that afternoon, Janet and Pete were able to see their son.
“You’re super anxious, but they come out so often to update you, every step feels like a milestone,” explains Janet. “We have him under sedation. The heart is coming in. We’ve got the heart attached. It’s pumping on its own — all of those updates are like hurdles you are overcoming that mean you are one step closer.”
Life after 300
There are still more hurdles to overcome. With any transplant, there is a risk of the body rejecting the new organ, but Dean’s is compounded by the fact that his blood contains an unusually high number of antibodies, small particles in the bloodstream that attack foreign bodies.
Boston Children’s is one of only a few hospitals in the country that will perform a transplant despite a high percentage of antibodies against the donor heart. Biweekly immunoglobulin transfusions help to combat Dean’s risk of rejection, by forcing the body to slow down the production of antibodies.
Now back home, lucky number 300 is back to being Dean. Upon his return in July, he had some catching up to do, but soon he was crawling, standing with a little help and laughing with his brother Lou. “He’s a hilarious kid, and all of that was masked when he was sick,” says Janet. “It almost felt like he was missing for quite some time. It is so nice to see our boy again.”
Learn more about the Boston Children’s Hospital Heart Transplant Program.