News: Waiting to Inhale

Seventeen-year-old Patrick Wood became too weak to attend school, a result of his ongoing battle with cystic fibrosis.

Children dying of lung disease can receive new lungs, and new life, thanks to the medicine of the 21st century — so long as their families can come up with enough cash.

Advances in the science of organ transplantation have enabled doctors to prolong the lives of children suffering from illnesses that 10 years ago were almost always fatal. But the system for financing health care remains nearly as primitive as in the days when country doctors made house calls and accepted chickens for payment. Today families struggle to pay for lifesaving treatment by holding bake sales and community dances and by placing collection jars in groceries and gas stations.

When catastrophic illness strikes a child, health-care financing ceases to be a debate about economics and turns into a fight for life. Such is the case for Natalie Gilday of Sunman, Ind., an energetic 7-year-old with big blue eyes who wears sparkly silver shoes; and Patrick Wood of Madeira, a 17-year-old with both of his ears pierced, his hair dyed blonde. Were it not for the oxygen they carry with them every minute of every day, you would hardly know they are ill. But in fact, both are awaiting double-lung transplants.

Natalie was born with bronchiolitis obliterans, a disease that causes her body to reject her own lungs. She is in "end stage" lung disease; doctors recommend she receive a double-lung transplant within a year.

"Her prognosis is grim without a double lung transplant," says her aunt, Brenda Gilday, who acts as family spokesman.

"Natalie only uses 19 percent of her lung capacity, and the doctors say she should be bedridden. The doctors are totally amazed because she is active, but not as active as other kids."

Patrick, a junior at Madeira High School, stands about 6 feet tall, talks about computers and Napster, but breathes heavily even with the liquid oxygen attached to him. Patrick has cystic fibrosis and has been on the organ transplant list since late last year. He had to stop going to school because he was too weak.

"Hopefully I'll be able to go back to school in the next few weeks," Patrick says. "Right now, I just have roller-coaster energy."

A double lung transplant costs between $300,000 and $400,000, with the post-transplant costs between $3,000 and $3,600 immediately after the operation and between $1,000 and $1,500 per month for the rest of the patient's life, according to Steve Agal, director of patient support services for the Children's Organ Transplant Association (COTA).

COTA, in Bloomington, Ind., acts as a bank for families whose children need an organ transplant. COTA's mission is that no child be denied a place on an organ transplant list because of money. COTA guarantees payment to a hospital, and in turn the patient's family holds fund raisers to repay COTA. The fund raisers can be anything that is legal and within the moral guidelines of the community, Agal says.

The costs are enormous.

"The operation is going to cost at least $600,000," Gilday says, "and my brother and sister-in-law's insurance caps off at $250,000. If we do not use a living donor, the cost will be between $400,000 and $450,000. If we do use living donors, which it looks like we might, each donor is an additional $80,000. That's an extra $160,000 — on top of the $400,000 for the operation. The post-operation and anti-rejection medicine will cost about $40,000 a year of Natalie's family's own money. The $300,000 we are raising now is basically to get her the operation. We are going to continually raise money, but right now it is to cover her medical expenses for the operation."

The costs of paying for a transplant exacerbate the stress caused by the child's illness itself.

"When my brother and sister-in-law found out how much everything was going to cost, their world crumbled," Gilday says. "They were talking about selling this and selling that, but then COTA came through, and COTA is overseeing our fund-raising. Everybody has been really helpful. We are really blessed that people have been so kind."

Something money can't buy
Patrick's COTA fund-raising began last week and has already raised $6,000. But as daunting as it might be to raise hundreds of thousands of dollars, that is not the biggest worry, according to Michael Wood, Patrick's father.

"The real issue isn't the fund-raising," Wood says. "If it's your kid, you will rob banks if you have to. But without the donations of the lungs, it's pretty frustrating."

Wood says he hopes to raise awareness about organ donations.

"It is important to have your entire family know your wishes," he says. "Just having it on your license isn't enough."

In most states, a driver license saying "organ donor" is not a legal document, and survivors make the decision about donating, according to Agal.

"We really should not have an organ shortage, because the same number of people die as are born each day," Gilday says. "But people are not donating their organs. There is a lot of taboo about being a donor. People do not want to go without all of their parts."

Since Nov. 28, Natalie's fund-raising campaign has raised approximately $200,000 — two-thirds of the goal — through dances, breakfasts, auctions and other events.

"(Natalie) was a little overwhelmed at the beginning of the fund-raising, but she acts like she was born to do this," Gilday says.

Natalie is now third on the organ recipient list. Once she becomes second on the list, her family has to move to St. Louis; the operation will be at St. Louis Children's Hospital. The girl who is first on the list has been waiting over a year, Gilday says.

"(Natalie) is not scared, not confused and very educated, and knows what the disease means, but she does not understand the consequences," Gilday says. "She asks questions about death, when people get their wings in heaven — right away, or do they have to wait a little while?"

Patrick had to stop going to high school last May after an eight-week hospital stay that depleted his energy.

"Even standing was hard," he says.

With the help of a tutor, Patrick keeps up with his schoolwork and plans to graduate next year.

"I went to the homecoming dance, and my school friends and I hang out all the time," he says.

Once Patrick becomes second on the organ transplant list, he and his family will move to North Carolina; his operation will be at the University of North Carolina Medical Center, at Chapel Hill.

"(Patrick) has been very brave and resourceful," says Dr. Robert Wilmont, his physician at Children's Hospital in Cincinnati. "He has a good sense of humor. He's inspired a lot of other people, and he does not feel sorry for himself. He stays very positive."

Patrick is looking forward to going scuba diving after his operation. "I am not Patrick Wood with cystic fibrosis," he says. "I am Patrick Wood with blue eyes. I like to prove the doctors wrong who said I can't do something. I never ask, 'Why me?' I always just deal with the task at hand."

For now, the task at hand is encouraging organ donations and raising money.

Donations for Natalie Gilday can be sent to COTA for Natalie, c/o Winton S&L Co. 5511 Cheviot Road, Cincinnati, OH 45247.