Taking up bagpipes is a huge milestone for Stensel-Byrnes, 35. In January 2004, she could run, swim, hike or do jazzercise; but by February 2004, she was on the operating table at Stanford, receiving a double-lung transplant.
"Two weeks before the surgery, I really fell apart," she said.
Stensel-Byrnes, a Redwood City resident, and her twin sister, Annabel Stensel, have cystic fibrosis, a genetic disease causing the body to produce sticky mucus that results in life-threatening lung infections and serious digestion problems. The sisters both had double-lung transplants, she said.
Last Wednesday, Stensel-Byrnes celebrated her lung power by performing on the bagpipes during the annual Heart, Heart-Lung and Lung Transplant Patient Reunion at Stanford Hospital and Lucile Packard Children's Hospital. Dozens of adults, children and their parents gathered to celebrate the gift of a second chance.
This year's gathering was especially celebratory, since three of the children received new hearts within an unprecedented 36 hours last August.
Sierra Bingham, then 6 years old, Peter Hanson, who was 2, and Ben Thornton, then 3, were among nine children awaiting hearts at the same time.
Sierra's condition was dire.
"She might not make it one more day," David Rosenthal, M.D., director of the Pediatric Heart Failure Program had said.
As a last-ditch effort, doctors at Packard Hospital prepared to put her on mechanical-heart support. Survival was uncertain. While she was being prepared for the device, a matching heart came in. Several hours later, she had a new heart.
The transplant was extraordinary; just 12 hours earlier, doctors had transplanted a heart into Ben's chest. Performing two pediatric heart transplants within 24 hours is exceedingly rare, according to Rosenthal.
"We only did 11 heart transplants during all of 2005," he said.
Peter had nearly died three days earlier, but on Aug. 4, he became the third lucky recipient of a pediatric heart within 36 hours. All of the surgeries were performed by Dr. Bruce Reitz, a professor of cardiothoracic surgery.
On May 4, the three children gathered around a miniature drum set. They took up hand drums, tambourines, maracas and other percussion instruments and began to bang out a heart-pounding rhythm. As the room pulsed with the semi-synchronous beat, the children smiled. They have survived, and now they are thriving.
"He was fading fast; he wouldn't have lasted," said Peter's father, Charles Hanson of Menlo Park. Peter is now back in day care. He can do things other children do: run around, take swimming lessons and gymnastics, Hanson said.
Ben, who lives in Cloverdale, received the sapphire-blue drum kit as a Christmas gift, his mother, Angel, said. He loves to play the drums, but Ben said he wants to be a nurse when he grows up. At Wednesday's gathering, he pounded out a steady beat. Usually, he's shy, but Wednesday he was caught up in the festivities, and he opened up, she said.
Sierra's mother, Stacy Bingham, recalled when her daughter's symptoms started. Sierra was playing T-ball in a field near their Baker, Ore., home.
"She couldn't walk across the field to practice. She would be so tired; she would lay there," she said.
But now Sierra, 7, is a pretty, bright-eyed girl brimming with energy. She plays softball and piano and does all of the things any 7-year-old can do, Bingham said.
Last year alone, Stanford Hospital and Lucile Packard performed 66 heart transplants, 28 lung transplants and four heart-lung transplants, according to a hospital press release. Lucile Packard is the only hospital in the Bay Area to perform pediatric heart transplants. Stanford performed the first adult heart transplant in the United States in 1968, and the world's first successful heart-lung transplant in 1981.
While the reunion brought hugs and smiles for the families of heart recipients, one little boy still needed a new heart. Shawn Stockwell, 8, of Eagle River, Alaska, has been waiting for a heart for 13 months, according to his parents, George and Trista.
Shawn was born missing the left side of his heart and is now in such extensive heart failure he must be on oxygen through the night, Trista Stockwell said.
"Looking at him, you wouldn't know he is in heart failure," she noted.
Shawn has lost weight. The visit to the reunion will exhaust him for two days, she added. He needs not only a heart his size, but also an O-blood-type heart. O-blood-type recipients can only receive hearts from like donors, she said.
As Shawn awaits a new heart, his parents worry they must soon consider other options, such as other medications or mechanical-heart support.
They know, however, that getting a new heart relies on someone else's misfortune.
"He is running out of time. He has trouble eating nowadays. His heart is sending a message to his brain that he (doesn't have the energy to) process one more calorie," she said.
This story contains 832 words.
Stories older than 90 days are available only to subscribing members. Please help sustain quality local journalism by becoming a subscribing member today.
If you are already a subscriber, please log in so you can continue to enjoy unlimited access to stories and archives. Subscriptions start at $5 per month and may be cancelled at any time.