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What families should know about organ donation

Posted 8:03 a.m. Tuesday

Lillie Kaster poses for a portrait with a picture of her son, Roger Vulgamore, on Thursday, Nov. 3, 2016, at the location where his ashes will be scattered in Buhl. Kaster says she had to fight with the hospital to respect her son's wishes of being an organ donor because his death was part of an active police investigation. "It's the ultimate gift you can give, so why isn't more being done?" Kaster asks. (Deseret Photo)

When the surgeon took her only daughter's heart out, Lacey Erickson was lying in her bed at home, four blocks away.

It was 2:30 in the morning on a Sunday in August, 11 days after the worst phone call the single mom in Idaho Falls, Idaho, had ever received. The words of the caller sent her racing to the hospital, so fast that she beat the ambulance there.

Although Erickson’s daughter, Makayla, lived long enough to tell her mother that she loved her, she could not recover from the injuries she sustained when she was thrown from a moving ATV six weeks before her 18th birthday.

And now, with Erickson’s permission, surgeons were removing her daughter's organs in the middle of the night — without anesthesia, because even though Makayla was still breathing with the help of a ventilator, she was officially dead. She was, in the cold, clinical language of medicine, a beating-heart cadaver.

In her bed, Erickson heard the whine of the helicopter coming to pick up pieces of her daughter that would be flushed with preservative and packed in ice, its pilot a participant in the multi-layered dance of precision that enables organ donation, the only good thing about the calamity that had befallen Makayla and her family.

For Makayla Erickson died perfectly in one way — under conditions that allow the donation of a heart: in a hospital, while on a ventilator, from a brain injury.

Most people don't.

That's why even though 3 out of 4 Americans over the age of 50 are registered as organ donors, most will be buried or cremated with their organs intact, even while 22 people die every day while waiting for a transplant.

"Only 1 to 2 percent of us die in a way where we're potential organ donors," said Anne Paschke, spokeswoman for the United Network for Organ Sharing in Richmond, Va. "The big factor is that in order to utilize organs from a deceased donor, the oxygenated blood has to keep flowing to the organs. If I have a heart attack and die at home, I can be a tissue donor, but not an organ donor."

Even if you meet the conditions and your organs are removed after your death, they may not find their way to another human being. Government data released in 2012 showed that 25 to 30 percent of pancreases and 18 percent of kidneys were ultimately used in research or incinerated with medical waste because of their poor condition or because a suitable recipient couldn't be found.

Their overall health also affects many Americans' ability to donate. Many potential liver donors are rejected because they had non-alcoholic fatty liver disease, most common in people who are overweight or obese. People with active cancer cannot donate unless they have brain cancer that hasn't spread.

Despite the challenges of finding suitable donors, in 2015, the number of transplant operations in the U.S. exceeded 30,000 for the first time. But about 120,000 people are on a waiting list for one or more organs, according to the United Network for Organ Sharing, the nonprofit that runs the transplant system in the U.S. via a contract with the federal government.

To meet the need, many organ-donation groups try to generate interest with edgy advertising campaigns; the U.S. Department of Health and Human Services recently proposed evaluating and rewarding hospitals based on their organ-donation education programs.

Some countries don’t wait for volunteers. Scandinavian countries have switched to a system where citizens have to opt out of donation, instead of opting in, as Americans do. China is under fire for its suspiciously high transplant rate, enabled by its use of organs from executed prisoners. And people in Pakistan have been kidnapped and forcibly had a kidney removed by criminal groups that NPR has called "kidney mafias."

In America, there's no shortage of people who want to donate. Almost all religious groups in America endorse organ donation, and 95 percent of Americans say they support it. But few of us will have the opportunity to give another human being our heart or lungs, or even to witness the extraordinary chain of events that allow a transplant to occur.

Here’s how it happened in two recent cases handled by Intermountain Donor Services in Salt Lake City.

The girl with the rainbow hair

Makayla Erickson had just texted her mother.

The 17-year-old, who tried on hair colors like others try on clothes, had moved out of her home a couple of months earlier, and was trying to make it on her own. She was struggling. She needed a loan.

A natural redhead who loved to sing and read — she was always several levels ahead of her class — Makayla was a "tough little stinker" who had dropped out of high school and was trying to find her place in the world, her mother, 37-year-old Lacey Erickson, said.

When the text arrived at 8:23 p.m., Erickson hesitated. A single mother with three other children still at home, she was unsure whether she should give her daughter the money, but a few minutes later, she texted back that she would if Makayla would pay her back.

At 8:42 p.m., the phone rang, and Erickson picked it up expecting that it was Makayla calling to thank her. Instead, it was Makayla's boyfriend, saying she'd been thrown from an ATV. Erickson thought he was joking. No, he insisted, the ambulance is on its way. Erickson, who had just gotten home from her job as the special-needs director at a child-care center, ran to her car and raced to the hospital a half-mile away.

The next day, police investigating the accident told Erickson that her daughter wasn't wearing a helmet when she overcorrected and flipped the ATV. The point of impact was the back of her head. In the intensive-care unit, Makayla drifted in and out of consciousness for days, her mother at her side. Occasionally, she would open her eyes and squeeze her mother’s hand, and doctors started to talk about moving her to a rehabilitation facility.

But on Wednesday, as Erickson sat by her bed, the spirit that animated Makayla suddenly seemed to disappear. Her brain had swollen so much that blood could no longer get to it. Nurses rushed in; doctors were summoned, and at 5:30 p.m., she was pronounced brain-dead.

Before that happened, Intermountain Donor Service had already been called.

"We typically get notified when doctors are sure the injuries are going to lead to brain death. That way we can do a medical evaluation to see if the person can even be a donor before speaking with the family. We don’t want them on a roller coaster of losing a loved one, then thinking they can help save others only to find out their loved one can’t donate," said Alex McDonald, director of public relations and public education for IDS.

Because Makayla had already been cleared as a potential donor, all that remained was for her mother to give permission. It was an agonizing decision for Erickson, who was 19 when Makayla was born and who had lost her own mother just four years ago.

“It was the worst feeling ever, trying to comprehend that they're saying she was gone even though she was still breathing. Maybe she'd come back. Maybe she wasn't really dead. But as I came to realize she wasn't coming back, I started thinking, something good could come out of this really bad tragedy,” Erickson said.

Erickson talked to her father, and when he agreed it was a good idea, she told Intermountain yes; it was 9:30 p.m.

At that point, an odd transfer of power took place: Makayla was essentially discharged from the hospital, and re-admitted under the care of Intermountain Donor Services with a new patient ID number. This allows IDS to take over the hospital costs from that point on; the recipient covers the cost of organ donation. There is no charge to donor's family other than the costs of hospital care before authorization.

Within hours, a medical team had run the tests to confirm that Makayla's organs were healthy enough for transplant, the UNOS database offered a list of potential matches, and IDS coordinators began calling transplant centers to say they had organs available.

There are more than 4,000 Americans waiting for a new heart, more than 99,000 waiting for a new kidney. The ones whose phones rang that night were chosen because of their proximity to the surgery, their blood type, their body size relative to the donor, and their overall condition (for hearts and lungs, those who will die within three months are given priority).

These things will not be considered: their race, age or gender. A woman's heart can be transplanted into a man; a man's liver into a woman. What matters most is that the organs are a good fit, literally, according to Paschke, the spokeswoman for for the United Network for Organ Sharing.

Typically, it takes about 36 hours after the family's authorization to match the donor's organs with recipients, schedule the surgeons and the operating room, and arrange transport to the hospitals where the transplants will take place.

The time lapse also gives the family time to say goodbye.

Erickson kissed her daughter goodbye the day before the surgery. Even though her daughter's heart kept beating until the ventilator was turned off by a physician in the operating room, Erickson said she knew Makayla was no longer there. That didn't make it any less painful when she heard the helicopter fly over her house.

She buried Makayla in Burley, Idaho, next to her mom, who died in 2012. About a month later, she received a letter from Intermountain that gave her general information about who Makayla had helped. "She did her part. I couldn't be more proud of her," she said.

Erickson, who hadn't given much thought to organ donation before her daughter's death, plans to register as a donor herself. "I would also ask that others consider doing the same," she said. "I never thought much about it before but it really does help in an odd way. Just knowing that she helped so many people. That a little bit of good came from this tragedy."

A last act of kindness

Two months before he shot himself in the head after a high-speed police chase, Roger-David Vulgamore had gotten his driver’s license and signed up to be an organ donor.

It was a gesture in keeping with her 24-year-old son’s compassionate nature, his mother, Lillie Kaster of Buhl, Idaho, said. But the donation almost didn’t happen because of the manner of Vulgamore’s death.

Kaster still doesn’t know the chain of events that caused her son to race away when a police car tried to pull him over late on a Tuesday afternoon in mid-August.

But she knows that by the time Vulgamore was cornered, 24 police cars had joined the chase. Previously in trouble for drug use in 2015, Vulgamore put a gun to his head and pulled the trigger at 6:10 p.m.

Kaster was at a training session at the 4H Extension office in Twin Falls when it happened; her husband had to bring her the news an hour later. After they arrived at the hospital, Kaster had a heart attack; she was in the ICU when her son was declared brain-dead shortly before midnight, a few hours after he was put on life support.

At first, Kaster was told her son couldn’t be a donor because it would interfere with the police investigation, but she wouldn’t accept that.

“My son was shot in the head; his heart and all his other organs were still in good condition. You should be honored as a donor unless it interferes with an autopsy or the investigation,” Kaster said.

“He wasn’t a bad kid. He just made some bad choices,” she said. Vulgamore, who as a teenager had started a scholarship in memory of a beloved teacher who'd died unexpectedly, was living with friends and working in construction at the time of his death.

Determined that her son would be able to perform one last act of kindness, Kaster lobbied from the ICU for his organs to be donated. She got a doctor to call the coroner, and then the state pathologist, who agreed to the donation so long as it didn’t involve Vulgamore's hands, which were needed to study gun residue.

Though still grieving the loss of her son, Kaster plans to lobby law-enforcement across the nation to make sure it doesn’t happen again. “My child saved five peoples’ lives. How many others were told ‘no’ when they could have helped somebody?”

The surgery took place on Friday. Kaster and her husband weren’t there — “the only thing we regret.”

The funeral was Wednesday — the day after Vulgamore was cremated — and among the mourners was the mother of the late Cindra Brinkman-Henson, the teacher that Vulgamore had honored by starting a scholarship in her name after she died suddenly at age 36.

“She helped me out with a lot of stuff,” he told the local newspaper at the time. “I wanted to give something back.” He was 15 years old.

The scholarship is now self-supporting, and Kaster helps to choose the recipients. “Her mom is like family to us.”

That family is growing because of Vulgamore’s latest gifts — his heart, liver, kidneys, pancreas and lungs, which were removed in a surgery that lasted about four hours, then implanted in four other bodies.

“I don’t know if we’ll ever hear from the recipients, but as far as we’re concerned, they are part of our family, even if we never meet them,” his mother said.

Who makes it happen

A national organization — The United Network for Organ Sharing — handles the generalities of organ donation, but there are 58 regional groups, called organ-procurement organizations (or OPOs) that handle the specifics.

These groups, of which Intermountain Donor Services is one, make the calls, schedule the surgeries, book the helicopters and package the organs — and when necessary, put them on planes. When transported across the country, organs go through security, just like your carry-on bags, according to Paschke of the United Network for Organ Sharing. “Before 9/11, we could just run (an organ) out to the plane; now they can’t fly in the cockpit anymore,” she said.

The increased airport security has added a new wrinkle in a system that is already hamstrung by the ticking clock. To remain viable, hearts and lungs have to be transferred with four to six hours after their removal; other organs have up to two days.

When looking for a suitable match, the OPOs first seek to find someone local, then expand the search nationally. Factors that can figure in besides blood type and size include medical urgency (how likely a person is to die in the next 3 months without a transplant), how quickly the recipient can get to an operating room, and if he or she is otherwise healthy. A person who has the flu when the call finally comes in will have to continue waiting.

Once an organ-procurement agency makes an offer to a hospital, the hospital has one hour to let the agency know if it will accept it. If not, the search pool expands.

And although the health of specific organs matters, the age and overall health of the donor isn’t necessarily a factor. “Even people with active cancer can donate their corneas,” she said. "Everyone should consider themselves a donor and let the medical professionals decide at the time of death what organs and tissues can be used for transplant."

Although 95 percent of Americans say they approve of organ donation, only about half actually sign up. To close the gap, Intermountain and other organ-procurement organizations make public education a priority – even in schools, even though people can’t officially authorize donation for themselves until they turn 18.

“One of the things we do is reach out to junior-high health classes and senior high driver’s ed. Anybody can sign up (to be a donor) at any age, but until you turn 18, if something should happen, the parents have the right to override the decision,” McDonald said.

Intermountain also works to educate employees at the DVM about organ donation, since in all 50 states, people are asked if they want to be a donor when they get a driver’s license. People can also register by filling out a form online.

To sign up as a donor, visit the Intermountain Donor Services website, where Utah and Idaho residents can register online. Elsewhere in the U.S., register at the website of the United Network for Organ Sharing.

EMAIL: jgraham@deseretnews.com

TWITTER: @grahamtoday

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