ORGAN DONORS: DECISION SHOULD BE DISCUSSED IN ADVANCE

In the event that one of them unexpectedly died, Kathy and Paul Breitenstein made clear to each other they wished to be organ donors.

While the Breitensteins supported organ and tissue donation, that support was tested in an unforeseen and tragic way.

On April 22, 1992, their son, Seth, died in an accident. Seth was two weeks shy of his fourth birthday.

"It is something Kathy and I had discussed between ourselves should something happen to the other," Paul Breitenstein said. "We didn't realize we would be faced with making that decision for one of our children."

The Breitensteins allowed Seth to be a donor.

Many people, unfortunately, don't consider the issue until a loved one actually dies. And when that situation arises, with the stress, shock and sorrow being experienced, organ donation is something people too often don't consider.

"At the time of death, this is not something you want to have to discuss," Breitenstein said. "You should have already had the discussion."

Despite the fact that someone has signed the organ and tissue donor information on the back of their driver's license, the final decision is in the hands of surviving family.

Gary Anderson, regional coordinator of Mid America Transplant Services, said that permission is granted from only 50 percent of potential donor families.

"The biggest barrier is family refusal," Anderson said. "Whether they have a signed donor card or not, we have to have the permission of the next of kin."

In the Southeast Missouri, Northern Arkansas and Southern Illinois region, which Anderson oversees, there are nearly 700 people in need of transplants on the waiting list with more constantly being added. In this region, only 350 to 400 of those on the list receive organs. Anderson said the number of donors is declining, partially due to the fact that the general population is getting older, meaning fewer eligible donors.

Contrary to popular belief, just because a person dies, their organs -- even though they may have been healthy and undamaged -- are usable for transplant less than 1 percent of the time.

Organs are only usable when the person's brain dies first. In that situation, the heart still functions temporarily, leaving time for the organs to be harvested. When the circumstance of death is otherwise, the organs suffer from a lack of oxygen, making them unfit for transplant.

However, virtually everyone else who dies is still eligible to donate tissue -- corneas, bone, skin or heart valves.

Cheri Huckstep Reed, a clinical nurse in the intensive care unit at the St. Francis Medical Center in Cape Girardeau, is charged with informing families who have just lost loved ones of the donor option.

"If a person has a signed driver's license, basically that just lets the family know what they want to be done," Reed said. "If they want to go against those wishes, that is their prerogative and you have to support them."

Surviving families often are unsure of what their loved one would have wanted.

"The main thing people say is, 'We never talked about it. I don't know what he wanted to do," Reed said.

Allowing Seth to be a donor gave the Breitensteins some measure of peace following his death. One week later, amid the other things on their minds, they had forgotten about giving approval for donation. Then they received notification from Mid America about the lives Seth had helped save or improve. That went a good way in helping the healing process.

"It is a way to memorialize Seth," Kathy Breitenstein said. "What a great tribute. Those people who received his tissue, they will never forget him even though they never knew him."

Since then, the Breitensteins have never regretted their decision. They have been outspoken supporters of organ and tissue donation, actively participating in activities to promote donor awareness. Transplant recipients they have met have been extremely grateful, which has made the Breitensteins even more dedicated.

A new state law that took effect Jan. 1 allows Missourians greater opportunity to make their wishes known.

Instead of leaving it up to those who renew their driver's licenses to fill out the information concerning organ and tissue donation, they are asked by the clerk when they apply for renewal. The law also allows them to donate $1 toward a fund to promote organ donation.

Paul Breitenstein can't understand why people who have considered the issue would refuse to become donors.

"When someone is drowning, you throw them a rope," he said. "That is what organ donation is, throwing a lifeline. Transplants do not take place without donors."