Astonishing stories of patients who cheated death or permanent disability, and the physicians who saved their lives.
(page 1 of 8)
Photos by Becky Thurner Braddock
The presents had been spirited into the hospital and stashed. The Ball family was ready for Christmas morning — a makeshift, strained celebration, but Christmas morning nonetheless. They were determined to celebrate the holiday as a family with 6-year-old Luke, but his body just wouldn’t cooperate. “We were losing him,” recalls his father, John, a nuclear engineer for Westinghouse. “His body just couldn’t sustain anymore.”
On Dec. 24, 2010, Luke, who had been on the list for a heart transplant since early November, was moved into intensive care. The gifts went home, unopened. Although the Child Life team tried to raise their spirits, this holiday still felt very dark. The doctors had one more thing they could try: a last-ditch medication. And it worked, for the moment. The crisis ebbed, if not passed. But the Balls heard the clock ticking. They knew that more than 15 percent of kids on the donor list die waiting.
For kids with life-threatening heart complications, the problem is a familiar one: Not enough energy. Procedure after procedure, hope after hope and, finally, if the cards land the right way, a transplant. For Luke, it began in the Pacific Northwest in 2004, with a prenatal ultrasound that revealed a congenital defect — a single-ventricle heart that wasn’t sending enough oxygen to his body. After countless treatments and surgeries, a near-fatal seizure and even a stroke, John and Stacie Ball moved the family to Pittsburgh, and Luke found himself on an operating table under the care of three doctors at the Heart Institute at Children’s Hospital of Pittsburgh of UPMC: Dr. Victor Morell, the chief of cardiothoracic surgery; Dr. Peter Wearden, a pediatric heart surgeon; and Dr. Steven Webber, chief of pediatric cardiology.
At 4 a.m., on Dec. 29, 2010, the call came: A donor heart was available for Luke. How does a parent begin to process such feelings? “Elation. Fear. Anxiety,” Ball says. “And of course, as you go through these waves of emotions, you realize there’s this other family that is going through so much pain and anguish.”
The extended family spent that morning with Luke. They played checkers, Uno and Candyland (Luke’s favorite). Then they waited. At first, the post-transplant news was good — not much bleeding. Then he went through 10 more units of transfused blood, the beginning of a “very sketchy night.” Alarms went off every few minutes, all night long. But the doctors were calm, which, in turn, calmed the family. “We were terrified,” Ball says. “But somehow we were comfortable.”
After a few days, Luke was pointing, talking, communicating and sitting up. “We had him back,” Ball says. “You saw the look in his eyes. It was so different. It was so new.”
“If Luke had been born in the ’70s, he’d probably be dead,” Dr. Morell says. But techniques developed throughout the past two decades allow doctors to “redo the plumbing” of faulty hearts. When transplant time comes, though, surgeons have to essentially nullify that redoing to implant the healthy, properly working heart — which is what happened in Luke’s case.
“We’ve come a long way,” Dr. Wearden says. “And now he has a chance at many more years.”
Luke still struggles with his energy level, but he’s catching up. He’s playing baseball — and even basketball and soccer. And the terrain hasn’t been entirely rough: Luke’s experiences have brought some of his heroes to the foot of his hospital bed — including Pirates infielder Neil Walker and his brother-in-law, Tigers infielder Don Kelly.
The Balls know a transplant doesn’t exactly carry a lifetime guarantee. But a year after receiving the new heart, on Dec. 29, 2011 (the date that the Ball family calls “Happy Heart Day”), Luke celebrated. Kelly and Walker visited. Last year, Luke, who’s now 8, had the thrill of a lifetime when he threw out the first pitch at a Pirates game. That’s the first step in his plan to eventually become the team’s second baseman.
“We told the Pirates to look out,” his father says. “Because if Luke says he’s going to do it, I wouldn’t doubt it for one minute.”
— Ted Anthony