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Ravell Call, Deseret News
Keri Stephens, mother of Anthony Whitaker, an organ donor, listens during a panel discussion encouraging organ donation at the Salt Lake Main Library, Tuesday, April 30, 2013.
We're always in the top five or six states in the country for the percentage of people registered, but you have to remember that only about 2 percent of deaths are actually eligible for organ donation. It's sometimes hard to get that point across. —Alex McDonald

SALT LAKE CITY — Hundreds of Utahns on organ transplant lists are waiting on a remaining 30 percent of Utahns to give them hope to survive.

It may be that the person who can provide a matching lifesaving organ just isn't registered to be an organ donor. While 70 percent of Utahns have joined the list, some are still holding back for one reason or another.

Throughout April, Intermountain Donor Services held various events to push for increased participation in Utah's Organ Donor Registry, but so far, the only thing that is up is the number of hits on its website, said Alex McDonald, director of public education for the organization.

McDonald said there's no way to tell how many people have been moved to action, but "this is one thing where every person has the potential to make a difference."

"We're always in the top five or six states in the country for the percentage of people registered, but you have to remember that only about 2 percent of deaths are actually eligible for organ donation," he said. "It's sometimes hard to get that point across."

Lori Haglund of Murray knows the pain of losing a loved one who was waiting on an organ transplant list.

Haglund's son, Brock Butler, died in September, eight days after his 21st birthday, while awaiting a coveted liver, the most dire of organs ailing individuals need, as there is no medical method available to keep the old one alive and functioning much longer after it quits working.

She had imagined picking him up from swimming practice after getting the call that a lifesaving organ was ready for him, and he always told her he wanted to include a trip to the barber on his way to the hospital to receive his new liver.

"That was how we lived our lives, feeling hopeful and that it would happen, never thinking for a second that it wouldn't," Haglund said.

Butler was diagnosed at age 10 with Crohn's disease and later was hit with the complicating diagnosis of an autoimmune disease of his liver. From that point, Haglund said, "we always knew that a liver transplant would be in his future, and we hoped it would be when he was an old man. We never imagined it would happen to us in this way."

Although it is painful to talk about, Haglund wants people to understand the tragedy that can occur when someone says no to donation.

"A year ago today, he was working part time and going to school and playing music with his friends and riding his bike and being a kid," she said. "If you knew about his disease, you could tell his skin was yellow and he'd tire more quickly than the average 20-year-old, but he was upbeat and happy about life. A lot of people didn't even know he was sick."

As of Tuesday, 730 Utahns were similarly awaiting lifesaving organs. Of those, 176 were waiting for a new liver, as theirs also may have deteriorated from a disease or other condition. About 475 people are awaiting kidneys, three are needing a new pancreas, 18 need a kidney/pancreas combination, 52 need a new heart, and six are awaiting lung transplantation.

More than 100 of those awaiting organs in Utah are under age 34; 107 are ages 35 to 49; 311 are between 50 and 64; and 143 are older than 65, according to the United Network of Organ Sharing, a national nonprofit organization that manages the country's transplant system under contract with the federal government.

"A lot of people are right in the prime of their life when they need these organs," McDonald said. Some are merely children and have much life to live.

"A void in our hearts"

Vittoria Frandsen died when she was just 8 years old. Despite a congenital heart condition present at birth, her mother said Vittoria "never let the physical challenges hold her back."

"We waited and prayed for a heart while she struggled daily to stay alive," Valeria Frandsen said. "Life has never been the same since then. Our grief and pain has not lifted one bit. She left a void in our hearts and our lives."

Wait time for organs, McDonald said, depends not only on the organ needed, but also the severity of a person's condition and the blood type to determine a match.

Tissue donation, which can come from any circumstance of death, may not be lifesaving, but "it definitely changes lives," McDonald said. Eye, heart, bone, skin, tendon and some vein tissues have the potential to be transplanted and therefore enhance a person's quality of life.

When Anthony Whitaker suffered a brain injury, his mother knew almost immediately that she had lost him. Keri Stephens began contemplating organ donation, and her son's organs, tissue and eyes were able to help save at least five lives and help two people see.

"It's the most positive thing that can come of something so terrible," Stephens said. "Because of donation, I know my son is still alive."

She carries a book with her that contains letters and photographs from the families of those whose lives were saved by the death of her son.

"It is the story of his gift to all these people," Stephens said. "It reminds me there is something more important."

McDonald said people not on the donor registry often have one of several concerns, including that they won't get the best medical care available if they ended up in a hospital.

Emergency room physicians, however, don't have access to information regarding organ donation, he said. At the point of admission to the emergency department, they also wouldn't know who is waiting for what and what blood types might be involved.

"Doctors and nurses have no incentive to let any patient die," McDonald said. "They will do everything they can to save them. Organ donation doesn't even cross their minds until they've exhausted every approach. And it is amazing the things they do, the lifesaving measures they try."

Other concerns

Another common concern involves superstition, that by signing up, something bad will then happen.

"Everyone dies someday," McDonald said, and most people aren't likely to know when that will happen.

Others not on the list, he said, exclude themselves because they think they're not suitable donors because of diabetes, high blood pressure or a previous cancer diagnosis or some other medical issue.

"There's really no medical exclusion except for HIV or full-blown AIDS, or active cancer, with the exception of some cancers," McDonald said.

He stressed that one organ donor can save up to nine lives and have an impact on 50 or 60 lives if tissues are also transplanted.

But with all the effort to sustain life, some awaiting organs ultimately die before receiving them. Haglund's son was just one of many in Utah last year, and she is hoping to spread word of how that impacted her family and his many friends.

"We felt like we had to do something to see some good come out of it," she said. "If we could help prevent some family from having to go through this, it would give him a legacy."

In addition to volunteering with Intermountain Donor Services, Haglund and her family are building the Brock Strong Foundation, which will embark on fundraising events to raise awareness about the importance of organ donation and "honor the life he lived."

Nearly 5,000 Utahns have given their organs after death in the organization's 11-year history. Each of those names are listed at the Celebration of Life Memorial at Library Square. The list also includes live kidney donors and individuals who have given significant amounts of blood in their lifetime. New names are ceremoniously added to the list each August.

"This isn't just a donor and a recipient. The donor has friends, family and maybe children," McDonald said. "The death of that person has touched an awful lot of people and probably will continue to for a lot of years. The same is true for recipients and everyone who is excited they are alive.

"It is affecting whole families, and that can be a huge number of people," he said.

To register as an organ donor, visit www.yesutah.org.

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