Optimism and Bravery Without a Cure

Bailey Hunsberger is no different than most teenagers. She loves music and hanging out with her two little sisters. She decorates her room with posters of her favorite heartthrobs like actor Patrick Dempsey, also known as "McDreamy" on the television show "Grey's Anatomy."

What makes Bailey different than other girls her age is that she is fighting for her life. Bailey's mother, Angie McGraw, remembered the moment she found out about her daughter's condition.

When Bailey was born she looked fine at first. She even scored a perfect 10 on the APGAR, a test doctors use to evaluate newborns.

"Fourteen hours later they came in and said, 'You have a very sick baby,'" McGraw said.

Bailey was born with aortic stenosis, a defective aortic valve that allows blood to back up into her lungs. Doctors told Bailey's parents she needed surgery, and her first operation took place when she was only 3 days old.

By the time she was 4, she'd had another one. After that there were little bumps in the road. Simple childhood illnesses such as ear infections or the common cold eventually turned into pneumonia. Bailey and her parents ended up in and out of the hospital. Her father, Scott Hunsberger, said, "You take the ordinary bumps in the road and multiply that by 100."

Even so, Bailey still did ordinary things, like riding her bike and playing ball. "She was happy. She thought she was perfectly healthy," McGraw said.

But in January 2005, the family was reminded of just how sick Bailey really was. Bailey told her parents she felt a little bloated -- it turned out she had retained enough water to increase her body weight by 15 percent. Her doctors said the fluid retention indicated that her heart was weakening.

At age 12, Bailey went into congestive heart failure. A documentary film team followed her, her family and her doctors at Riley Children's Hospital in Indianapolis as they searched for a way to keep Bailey alive.

In the film "Heart to Heart," Dr. Mark W. Turrentine, a pediatric cardiovascular surgeon at the Riley Hospital for Children, said Bailey wasn't doing as well as she appeared. Bailey's doctors wondered if she had scar tissue in her heart. They wanted to avoid a heart and lung transplant by cutting out that scarring.

Dr. Robert Darragh, a pediatric cardiologist at the Riley Hospital, said she would have a much better long-term chance of survival if her lungs were given a chance to heal. "She would be a candidate for just a heart transplant alone," he said.

After meeting with the doctors, Bailey's parents felt positive, but worried about the possibility of a double transplant.

"We knew what that meant in terms of Bailey's long-term viability," Scott said.

Hope Comes Half a World Away

The doctors acted quickly and planned a surgery to thin the lining of Bailey's heart in the hopes that her blood and lung pressures would go down. But they weren't sure her heart was strong enough to work on its own. They needed a back-up plan.

"They kind of told me everything they will do and everything that they might do," Bailey said. "Like I might need an assist device and that'll help my heart rest up so that it will be better."

Bailey's parents felt this device might buy them time while waiting for a donor heart. But the device, known as the Berlin Heart, lived half a world away in Germany.

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