[Times photo: John Pendygraft]
Bethany Fletcher, who will be 2 next week, watches with fascination as music paper scrolls by in a player piano at her grandmother's house.

By MONIQUE FIELDS

SEMINOLE -- Just shy of the terrible 2s, she has been fighting for her life since birth.

Bethany Lin Fletcher came into this world with an enlarged heart, a faulty heart valve and a hole in her heart that robbed her of oxygen.

On Saturday, her second birthday, this little tot will wear a red baseball cap and stroll in the American Heart Walk as a survivor of heart disease. Hers is a story of how technology is helping infants survive what could have been fatal complications at birth and how her family ensured she received the best care.

Bethany will be surrounded by her family at the walk. Within arm's reach will be her mother, fraternal twin brother, grandmother and grandfather, the one who survived a heart attack 20 years ago.

They will be among 10,000 bay area walkers who are expected to raise $800,000 for American Heart Association research that helps children like Bethany.

"I just look at her sometimes, and I just think she is a little piece of heaven on earth," said her mother, Kim Fletcher.

"She's our little miracle," her grandmother Linda Butler chimed in.

That she is.

Bethany has Ebstein's anomaly, a congenital heart disease, that affects one in 10,000 births. Its cause remains a mystery.

The Fletchers said doctors told them that five years ago their daughter would have died. Today, technology called an Extra Corporeal Membrane Oxygenator -- or ECMO -- a heart and lung bypass machine, can keep a little heart pumping.

Tampa doctors detected Bethany's heart defect when her mother was 27 weeks pregnant. They noticed during an ultrasound exam that her heart was enlarged.

The news sent her father, Brian, to the Internet. There, he researched the disease, and the hospitals and doctors who specialize in treating it.

As a result, the Fletchers moved to Boston for three months to be near Children's Hospital Boston. Brian Fletcher knew he couldn't control his daughter's destiny, but he wanted to feel as if he and his wife had taken the right actions to give their daughter the best chance at survival.

"From the time we got there, we had a good feeling about the quality and the doctors," he said.

Their children were born at Brigham and Women's Hospital in Boston, but Bethany spent the first seven weeks of her life in Children's Hospital. Both hospitals are teaching centers for Harvard Medical School.

Soon after Bethany was born, she underwent a procedure called ablation to pinpoint where her arrhythmia, an abnormal heart beat, was occurring. After doctors found the area, they burned the tissue to give her heart a normal pulse.

Still, doctors knew she needed surgery. Her right valve was abnormal. Blood was supposed to move forward in the valve, but it fell backward and enlarged her heart. The right side of the heart carries blue blood. Bethany had a hole in her heart between her atria, which allowed blue blood to cross to the other side of her heart and cause her skin to have a faint blue tint, said Dr. Gerald Marx, a pediatric cardiologist at Children's Hospital.

In July she had heart surgery, and doctors repaired her valve and made the hole in her heart much smaller, which gave her hope for life. Blue blood no longer leaks. Instead, it travels to her lungs to become oxygenated.

"She's doing terrific," Marx said. "Her immediate future is very good, and we hope her heart will become much smaller and will function better."

There is still one unknown. As she grows into adolescence and young adulthood, the patch in her heart might weaken, which would cause her valve to start leaking again.

"Oftentimes the valves have to be replaced," said Marx, who follows a dozen cases similar to Bethany's.

Last week, the only hint that something went wrong while Bethany and her brother, Dustin, were in the womb was the scar peeking out of Bethany's dainty white shirt.

Everything else appeared normal. She, like other children her age, knows how to get what she wants. When she wants her mother to soothe her with words, she utters, "Book." She has learned the power of "No," which she clearly pronounces when she doesn't want juice or a cookie. Finally, when the mood hits her, she is likely to request music and bounce to it.

Still, Kim Fletcher keeps close watch these days. Twice a day she gives Bethany two diuretics to flush fluid from her body and a powerful drug to help her heart pump -- the same medication her grandfather, Norman Butler, takes each day. At night, Bethany also takes aspirin, which helps thin her blood and ward off clots.

"The best thing for me is to know that other kids get through it, survive it," Kim Fletcher said.

Bethany has her own way of telling people how doctors saved her life. When asked by her mother where they were going to operate, she would pat her chest.

That's only one of the reasons why doctors and nurses nicknamed her "Tough Bird."

"She's tough," Marx said. "She's come a long way."

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