Anything for His Girl
updated 12/08/2008 AT 01:00 AM EST
•originally published 12/08/2008 AT 01:00 AM EST
Tiana had cardiomyopathy, a disease affecting 1 in 100,000 children that prevented her heart from pumping blood through her body. She needed a transplant, but finding an infant donor could take months—time Tiana didn't have. Weeks later, sedated, hooked up to a heart-lung bypass machine and suffering from an infection, "she had gone downhill," says Tillman. "She was losing her will."
Doctors then raised another option: the Berlin Heart, a small external cardiac pump [see box]. Without it, "the chance of Tiana dying while waiting for a donor would have been very high," says one of her surgeons, Dr. Sunjay Kaushal of Children's Memorial Hospital in Chicago. While pumps for adults are available in the U.S., none for infants have yet been approved by the Food and Drug Administration. (The device is currently in trials at 15 hospitals around the country.)
Desperate, the Tillmans asked the FDA for a "compassionate use" waiver for the Berlin Heart, which has been used to treat 500 babies worldwide since 1990, and 180 in the U.S. and Canada. Within a week their request was granted, parts were shipped to Chicago, and doctors immediately attached the device to Tiana's tiny coronary arteries. The next day she opened her eyes for the first time in two weeks. "Her hands and feet felt warm again. She stopped urinating blood. It was amazing," says Jackie, 27, a homemaker.
But the clock was still ticking: Berlin Hearts are meant to be interim measures until a donor organ is available or the patient heals. Remarkably, two days later a donor was found. "I was happy, but I struggled with another kid dying for my kid to live," says Tillman. "I didn't want anyone to sacrifice other than myself."
After an eight-hour surgery, Tiana had a new heart. In a month she came home to join sister Talya, 3. And while she takes medication so her body won't reject the heart, doctors say she can expect an active life. Today she is a "very happy" baby, says her dad, who even thrills at dirty-diaper changes. "I'm looking at a miracle," he coos to Tiana. "You're a stinky miracle."