Chris Smith: Ben Thornton is headed to college, thriving with a second heart and a set of wheels
Being 3 years old wasn't anywhere near as much fun for Ben Thornton as for typical preschoolers - nowhere near as light on everyday worries and pain.
At this time in 2006, the boy and his folks and his new baby sister were living in Cloverdale. A persistent cough led to a harrowing discovery: Ben's heart was enlarged and besieged by a rare and menacing congenital defect.
Time froze for Angel and Gary Thornton the moment they heard that their son's life depended on him having his heart removed and replaced.
“I pretty much jumped out of my chair,” recalled Angel, now a legal assistant in Santa Rosa.
Elaborate medical measures kept Ben alive while he awaited the transplant of a healthy heart from an anonymous, deceased donor. The technology that sustained Ben before the surgery was not without consequences: A blood clot lodged in an artery to his spine, and by impeding blood flow the clot partially paralyzed his legs.
At last a suitable donated heart was found. Early in August 2006, at Lucile Packard Children's Hospital at Stanford University, a high-risk transplant surgery reset and renewed the severely ill boy's life. Ben recovered well, but the spinal cord damage caused by the clot made walking so arduous and wobbly that he opted to move about on wheels.
“He didn't like taking forever to get from Point A to Point B,” said his dad, a Sonoma County Sheriff's deputy. Gary Thornton remembers that not long after Ben took a test ride in a manual wheelchair “he was zipping around in that thing.”
Years later Ben was on the cusp of his teens and living with his family in Santa Rosa when the then-quiet and tentative kid discovered something that brought him a world of joy and confidence and independence: highly competitive wheelchair basketball. He poured himself into the sport. It and his coach utterly changed his life.
Today Ben Thornton is 17, about five months from turning 18. He awaits the pandemic-disrupted graduation of the Maria Carrillo High School Class of 2020.
It's bittersweet for him to be wrapping up his nearly seven-year run with a youth wheelchair basketball team out of the East Bay. But he's got plans.
Ben is anticipating, with all his heart, making a start at the University of Arizona - on full-ride athletic and disability-related scholarships.
Had he not discovered adaptive basketball, says a young man awash in gratitude, “I don't know where I'd be.”
Ben's folks are as grateful and proud as would be any parents of a high school senior awarded scholarships to a respected university, and maybe a pinch more so.
They know better than anyone what their son has gone through. And they know that 14 years ago they nearly lost him forever.
Gary and Angel Thornton had just welcomed daughter Ava into the family when, in April 2006, they agreed that Ben should see his pediatrician. He'd developed a stubborn cough that caused his folks to worry that he might have pneumonia. If only the malady were that simple.
A chest X-ray showed that Ben's heart was enlarged. Further testing revealed pediatric restrictive cardiomyopathy, a rare cardiac disease that makes the heart muscle rigid and incapable of filling with and pumping blood. The boy would need a new heart.
With that, the Thorntons' all-consuming medical saga began.
About a month after the initial doctor's visit, swelling appeared in Ben's face and hands. His folks took him for the first time to the esteemed children's hospital at Stanford.
He was admitted and the following morning was in a room when he went into full cardiac arrest.
Doctors rushed to him to commence chest compressions and administer oxygen through a hose.
They were at it an hour when, at last, Ben's heartbeat and breathing resumed. His parents count as something of a miracle the finding that he'd suffered no brain damage from going so long in a lifeless state.
In May, the Cloverdale tyke with a damaged heart was connected to a heart-lung bypass machine. And on June 7, he became one of the youngest patients in the U.S. to be surgically attached to a Berlin Heart, an external, computerized pump connected to tubes that pulled blood from the left ventricle and sent it to the aorta.
Invented and manufactured in Germany, and affixed to Ben by a German doctor, the Berlin Heart would not receive FDA approval for another 5 years. In 2006 the device was allowed for use in the U.S. on a case-by-case basis.
“We didn't have any other options,” Angel Thornton said.
Her boy was kept alive by the Berlin Heart at Packard Children's hospital for more than 50 days as he awaited a replacement heart.