Rebounding from extraordinary challenges

When 15-year-old point guard Ben Thornton wheeled onto the court for the Bay Area Outreach and Recreation Program’s (BORP) youth wheelchair basketball West Coast Conference Championship at Stanford’s Arrillaga Family Recreation Center in March, it was a game he was certain to play with heart —the same heart, in fact, that he received at Lucile Packard Children’s Hospital Stanford nearly 12 years ago.

In 2006, at just 3 1/2 years old, Ben underwent a heart transplant at Packard Children’s Hospital to treat a rare heart condition. Cal Hi Sports Bay Area recently featured Ben’s story:

It started in April 2006 when Ben’s parents, Angel and Gary, took him to see a pediatrician near their home in Santa Rosa, California, because he had a persistent cough. They were concerned he may have pneumonia, but a chest x-ray revealed something much more severe: Ben had an enlarged heart. He was diagnosed with restrictive cardiomyopathy, a rare congenital heart defect that causes the heart muscle to stiffen and restricts its ability to effectively pump blood. “It is a very dangerous form of cardiomyopathy, in which the heart muscle is not only weak, but also becomes very stiff and unable to effectively fill with and pump blood,” explained Daniel Bernstein, MD, Ben’s pediatric cardiologist at Packard Children’s.

A month later, Ben began experiencing swelling in his face and ankles. Concerned, his parents brought him to Packard Children’s. As doctors were making their morning rounds to his room a few hours later, Ben’s heart stopped. After 60 minutes of performing chest compressions and administering oxygen through a hose, the doctors were able to resuscitate Ben. They placed him on a heart-lung bypass machine called ECMO (extracorporeal membrane oxygenation), which took over the work of his heart and lungs.

Three days later he was placed on the Berlin Heart – an external heart pump that attaches to the body with tubes, and which sustains patients for longer periods of time as they await heart transplant. The Berlin Heart was not yet approved by the FDA at the time, but it was available on a case-by-case compassionate-use basis for patients with life-threatening heart disease. Ben was a candidate under this pathway, and he became one of the youngest patients in the United States to be placed on the device.

On the left, Ben’s enlarged heart pre-transplant. On the right, Ben’s chest today with his transplanted heart.

“Day after day after day, you’re in a holding pattern,” Gary told Cal Hi Sports as he described waiting for Ben’s heart transplant. “You really don’t have many options other than to wait and try to stay positive.”

In August 2006, 55 days later, the Thornton family received the call they had been waiting for — there was a donor heart available for Ben.

Ben’s transplant was successful, but he was challenged even further as he recovered.  One risk associated with ventricular assist devices (VADs) such as the Berlin Heart, is the formation of blood clots in the device, and that risk is higher with the smaller devices used in children than it is in adults. In Ben’s case, doctors believe a small blood clot formed and entered his blood stream and traveled to an artery supplying his spinal cord, leading to partial paralysis of his legs. Ben worked with physical therapists following his transplant and began walking with the support of a walker, but by November of 2006 Ben had regressed to crawling around the house, and an electromyographic (EMG) muscle scan confirmed his partial paralysis. Today Ben continues to attend physical therapy once a week and is making progress on his mobility. He is able to straighten his legs while seated in his wheelchair and can walk short distances with the support of walking sticks.

“At first, I didn’t know what I was going to do and I didn’t know where I was going to go,” Ben told Cal Hi Sports. “I started getting into sports more — that’s how I got into wheelchair basketball. And now I’m really happy with it. I would rather be in a wheelchair than be able to walk at this point in my life,” he added.

In the years since Ben’s transplant, Dr. Bernstein explains that this risk has been significantly reduced as doctors have become better able to manage clotting in the Berlin Heart and other VADs and as a new generation of devices that are smaller and, in some cases, implanted directly into the chest have become available for use.

Despite Ben’s paralysis, today he is thriving as an active, successful adaptive sports athlete. He is the point guard on BORP’s Jr. Road Warriors youth wheelchair basketball team, which has allowed him to connect with other teens his age living with similar challenges. This year, the Jr. Road Warriors finished the season ranked #7 in the West Coast Conference after winning their first game of the championship tournament against Portland. The game was played at Stanford.

“When I first started playing, it really gave me a boost of self-esteem,” Ben said. “The people that are here really lifted me up. They are similar to me; they all have disabilities. They are my best friends, and I wouldn’t replace them for anything.”

“I get a lot of joy from seeing Ben’s success,” Dr. Bernstein said. “In spite of his spinal injury, Ben is living every part of a normal child’s life, and it doesn’t seem to be slowing him down. He’s really amazing.”

As we celebrate National Donate Life Month this April, we recognize that Ben is alive today not only because of the life-saving Berlin Heart, his team of doctors and nurses, and the support of his family, but also because one family, who in their moment of greatest grief opted to help another family through the ultimate gift of organ donation. To learn more about organ donation, visit Donate Life America.

Discover more about heart transplant.