A brief chance to be a normal teen-ager

Lung transplant provided hope, a few good months

October 22, 2003|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

At 18, Heather Marie Beacham was finally getting her shot at being a teen-ager. For years, her cystic fibrosis had kept her on the couch or in the hospital, tied to a feeding tube at night and, later, an oxygen tank around the clock. Many of her old friends in Dundalk dropped her. And she almost died waiting for a double-lung transplant.

But after a recovering from that operation last Christmas, Heather was back at school, hanging with new friends. A week ago, she dressed up in an eggplant-colored, floor-length dress for her homecoming dance. A few days later, her mother stood by with proud tears as a photographer snapped Heather's senior portrait.

All Heather ever wanted, according to her 11-year-old sister, Candice, was a normal life. But after the pictures, when the other seniors went back to classes at Dundalk High, Heather's mother drove her to Johns Hopkins Children's Center to check out some back pain. Three days later, Heather died from chickenpox. Her weakened immune system couldn't fight off the childhood disease. She was buried yesterday.

"When these things happen, they can happen fast," said Dr. Peter Mogayzel Jr., Heather's longtime physician at Hopkins, after he knelt by her coffin at the funeral home Monday night.

Cystic fibrosis, a chronic genetic disease, scars and damages the lungs -- most patients need a transplant by their 20s or 30s to survive. Of those who receive lung transplants, half will survive for five years, doctors say. About 10 percent will die by the end of the first year.

But no one thought Heather, who had been doing so well, would end up in that group.

Since her transplant, the black marks under her light blue eyes had faded, and her pale face was flushed with color. The old smile, often forced, was now full and easy. She was eating and gaining weight. The hump that had formed on her back as a result of her condition wasn't as noticeable.

It was easier to go the mall and the movies. Heather didn't need to haul oxygen. She wasn't weak and drained, coughing and gasping. She could breathe again.

"Friends came out of the woodwork," said her mother, Cindy Ross Colaianni. "They said they wouldn't lose her this time. They'd stand by her."

Heather hadn't been in the classroom for a year and a half -- she did her work from home. But this fall, she was so excited about going back that she went shopping for clothes in July. She spent time with a boyfriend. One day, she climbed on her sister's bike and took off flying through the neighborhood.

Like other teen-agers who undergo transplants, she was weary of her medical burdens. She had a taste of what life could be, and over the summer it was sometimes hard to keep doctors' appointments or stick to her rigorous medication schedule.

"I think for the first time in so long, she actually felt so good that she wanted to be really normal," her mother said.

After years of not talking about her future, Heather was looking forward -- to spring break and graduation and beyond. She had never mentioned college; and suddenly, she was saving the pamplets that came in the mail. After she started an internship with the school nurse this fall, she decided she wanted to work with children.

A few weeks ago, at a family birthday party, she was like any other teen-ager, dancing with her cousins, chasing her 2-year-old brother, Kyle. Later, she stood up with her sister to sing "Daddy's Hands," a slow country tune, to her dad, Terry Colaianni.

"She couldn't do karaoke before," her mother marveled. "She didn't have enough air."

The trip to the hospital last week seemed almost routine at first. Everyone was used to seeing her bounce back. But by Wednesday evening, she needed a ventilator. Early Thursday, something woke her mother from a deep sleep. She had a terrible feeling.

At the hospital, red spots were appearing, and doctors realized a chickenpox virus was attacking Heather's organs. She was sedated and unconscious, but her mother held her hand, rubbed her hair and talked to her.

"I know you're scared, honey. If you can hear me, Mommy's here," Ross told her. "I know you're tired, sweetie. If you want to sleep, it's OK."

Through all Heather's illnesses, they hadn't talked much about this moment. Whenever one of them tried to say something about dying, they would end up crying, or Heather would change the subject. And lately, it had seemed as if they didn't need to talk about it at all.

Of this, her parents were sure: Heather had several good months from the transplant, and they didn't regret it. They only regretted that her organs were too damaged to donate to another patient.

They also knew one detail. A few years ago, Heather had mentioned to her mother that she wanted to give out angels at her funeral. So, after Heather's death, her mother and father scoured Hallmark stores, Walgreens and other outlets.

When the pallbearers carried out Heather's coffin yesterday morning, two lines of teen-agers formed on either side of the procession. They wore small pins: some silver, some gold, angels all.

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