Iowa Alumni Magazine | December 2007 | Features

Law and Medicine

By Kathryn Howe
Drafted by a UI professor, new national rules boost the life-saving potential of organ donation.

A healthy, happy Fletcher family (from left, Madeline, Ann, Mick, and Olivia) will never forget the generosity of a stranger who gave Maddy a second chance at life.

She barely survived the plane ride from Iowa City to Omaha.

Throughout her rescue flight, nine-year-old Madeline Fletcher retched violently and faded in and out of consciousness. Ann Fletcher could only hold her daughter's hand and pray. Oh, God, I don't want it to end like this.

Just hours earlier, doctors at University of Iowa Hospitals and Clinics (UIHC) had determined Madeline was in acute liver failure. Her only hope was a transplant, and they felt her best chance was with a pediatric liver specialist in Nebraska. With Maddy immediately placed on the national waiting list for a donated liver, her parents learned that their daughter had at best just a few days to live.

"I was so upset and wanted a liver so bad for her," says Ann Fletcher, 92BBA, 94MA. "Yet at the same time I was wishing for someone to die, for some other mother's heart to break."

Two years previously, Paula Sampson had paid the terrible price. When her 19-year-old son Jeffrey left their Carlisle home for his part-time job at Southtown Chrysler, she fully expected he would be home for dinner.

Instead, he died at 3:10 p.m. on a Tuesday, his vehicle hit by a 20-year-old driving a black BMW at 100 miles per hour. At the crossover of a four-lane highway north of Indianola, the young man with a wild mop of blond curls and dreams of owning his own construction company drew his last breath. The next morning, in a fog of grief and bewilderment, his parents found themselves on the phone with someone from the Iowa Donor Network, agreeing to donate their eldest son's skin, ligaments, and bone.

Every day, the unimaginable happens for families like the Fletchers and Sampsons. A grave diagnosis meets a tragic accident and suddenly worlds collide through the possibility of organ donation. Such families bring humanity to the cold statistics: nearly 100,000 people on the United Network for Organ Sharing's national waiting list currently need a lifesaving transplant. This year, 7,000 of those patients will die because the wait grows too long. Many others will have their names removed from the list because they become too sick for the procedure.

"We're victims of our own success," explains Alan Reed, chief of transplant surgery at UIHC. "Medical advances allow us to do more, to help people live longer. The difference between available organs and the people who need them is huge. It's the biggest issue we face in transplantation today."

Sheldon Kurtz UI law professor Sheldon Kurtz has helped draft a law that should help address the nation's shortage of organs for donation.

Honoring Last Wishes

To shrink the growing gap between supply and demand, University of Iowa law professor Sheldon Kurtz — as a member of the National Conference of Commissioners on Uniform State Laws — recently revised the Uniform Anatomical Gift Act (UAGA), which for almost 40 years has governed organ donations for the purpose of transplantation. Kurtz's new version makes clear the ethical principle of first-person consent.

"Older versions of this law basically said, 'We're prepared to honor your wishes, as long as your family doesn't object,'" says Kurtz, noting that in the emotional tidal wave of loss and uncertainty following a death, loved ones have at times opted not to follow through with a donation. "Our new act effectively bars anyone from making a gift of another person's organs when that person has signed a refusal, or from overturning a gift once a person has indicated a desire to donate."

In addition, the law aims to increase the number of organs available for transplant by improving collaboration among hospitals, organ procurement organizations, and medical examiners, who handle the majority of deaths that could result in donation. It also encourages states to establish donor registries, where potential donors can indicate exactly what organs they'd like to make available or whether they want their bodies used for medical research.

UAGA also respects the decisions of mature minors, stating that anyone old enough to get behind the wheel of a car can decide to become an organ donor without parental consent. Kurtz still gets chills when he tells the story of a group of North Dakota teenagers who recently marched into the Department of Motor Vehicles to have their organ donor preferences noted on their drivers' licenses. They made that choice to honor a classmate, who died waiting for a kidney.

Since 2001, Kurtz has helped draft rules on many such topics in an attempt to harmonize state laws across the country. After almost three years of work, the commission finalized the new UAGA last year and distributed the document to state legislatures for approval. So far, some 20 states have adopted UAGA, including Iowa, and Kurtz hopes to have all 50 on board by 2009. While he knows the organ shortage is more than UAGA can solve alone, it's still the most rewarding accomplishment of his law career.

"We're under no illusions that we're going to solve the whole problem," he says. "But we're going to solve some of it."

Waiting for a Miracle

For a start, the new law will help alleviate the suffering of families like the Fletchers.

Their ordeal ensued last May, when Maddy began feeling sick to her stomach. Her parents scheduled an appointment at UIHC's gastrointestinal specialty clinic, while their family doctor explored possible explanations such as acid reflux disease. Then during one Sunday lunch outing in July, Mick Fletcher, 89MBA, looked up from his plate to see that his daughter's eyes were yellow. At the emergency room, blood and urine samples proved Maddy's liver was not functioning properly.

Doctors strongly suspected Maddy had a rare genetic disorder called Wilson's disease, which causes copper to accumulate in the liver. Once specialists at the University of Nebraska medical center confirmed these suspicions, Maddy took her place on the transplant list less than 48 hours after she first walked into the ER. The Fletchers knew there were no guarantees she would ever leave the hospital alive.

A longtime nurse, Barb Rakel knows all too well the nightmare they endured. Now a faculty member in the College of Nursing, Rakel was once the heart/lung transplant coordinator at UIHC. She evaluated and educated candidates for transplant, cared for them while they waited, comforted them when an organ never materialized. She'll never forget the young man who waited more than a year, the last six months hospitalized on drips, after a virus had attacked his heart. Time ran out. He died.

"It was extremely upsetting to see him not make it because there wasn't an organ available," says Rakel, 70BSN, 88MA, 02PhD, who was a member of the UI surgical team that performed the state's first heart transplant in 1985. "These people become your family. You hope with them and listen to their plans and dreams."

On the other hand, Rakel was the person lucky enough to make those unforgettable phone calls: We have a heart; how soon can you get here? Those calls inevitably came in the middle of the night, and patients would stumble through the hospital doors, nervous and excited. The improvement in their health after surgery always amazed Rakel — the return of color to their cheeks, their renewed energy. It was magic. A miracle. That's what the Fletchers needed for Maddy.

Luckily, their wait was short. But it was still excruciating. Maddy seemed to know what she was up against and asked her mother: "What if you can't find another liver? What's going to happen to me?"

Twenty-eight hours after Maddy's name appeared at the top of the waiting list, the Fletchers learned the hospital had acquired a liver.

"We only waited a little more than a day," says Ann, "but it felt like an eternity."

Finding the Perfect Match

Paul Sodders, public affairs manager for the Iowa Donor Network, is hopeful that UAGA will deliver similar experiences — and briefer waits for healthy organs — to more and more families.

"We know UAGA has already made a difference here and decreased our waiting list numbers," says Sodders. "This act will assure us that when we travel to Missouri or Kansas to bring back a liver for someone waiting in Iowa, the laws are going to be the same."

When coordinators at organ procurement organizations become aware of a suitable donor, they access a national computer system to find the best match for the healthy organs, eyes, or tissues. The sickest patients, like Maddy, receive first consideration. The process not only takes into account severity of illness, but also length of time on the waiting list, tissue match, and geography (hearts can't travel far or they'll lose viability, while hardier kidneys last longer). Coordinators match hearts, livers, and lungs by blood type and body size; kidneys and pancreas require tissue-typing tests to guarantee the best possible genetic match. If the computer can't pinpoint suitable recipients within the coordinator's own service area, it considers the rest of the region and the nation.

Maddy received an adult liver, which was split in half to fit inside her small frame. That's all the Fletchers know about the person who saved their little girl.

The Sampsons don't know much more about the dozens of people Jeffrey helped. They just know that they made the right decision.

Like many families, the Sampsons hadn't talked about organ donation with Jeff. But, at the time of his son's death, Claude Sampson was training to teach driver's education at the Meskwaki Settlement School near Tama. Part of the curriculum requires instructors to share information on organ donation with their students. The morning after the collision, Claude knew what he had to do. "My motivation was strictly personal," he says. "I wanted Jeff to live on through others. I was not ready to let go of my son."

For people like Jeff who haven't indicated their wishes prior to death (or signed a refusal), UAGA expands the eligible "surrogates" who may make an anatomical gift on their behalf. Beyond parents and spouses, this group now includes anyone acting under a healthcare power of attorney, guardians, adult grandchildren, and close friends. If you're listed as a donor on your driver's license or through a state registry, it's still important to tell your loved ones. Even though UAGA ensures that consent no longer hinges on the approval of family members, the process is far smoother if they're aware.

Because Jeffrey died at the scene of a traffic collision, the Sampsons couldn't donate his organs (organs must stay oxygenated, so the ones received for transplant usually come from people who've died on a respirator in the hospital). They were able to donate his skin, leg ligaments, and bone. The Sampsons later learned that Jeff's bones benefited more than 50 people across the U.S., in some cases completely changing their quality of life.

"You never expect to find yourself in this situation. You look for explanations; there are none," says Claude, who now serves on the Iowa Donor Network's board and gives presentations on donation to drivers' education classes throughout central Iowa.

"Jeff wasn't a donor; we made him one. It heals me to know that, even in the midst of our shock, we were able to make this decision, to move past the anger and know that our child could still do some good for some people. This is how we stand for our son."

From the Frontlines

As a participant in the committee meetings to revise the Uniform Anatomical Gift Act (UAGA), Paul Sodders offered valuable perspective on how organ donation really works in the U.S. He also explained the obstacles.

"One of our biggest barriers has been families who've never had a conversation about donation with their loved ones, so they're unsure what that person would've wanted," says Sodders, public affairs manager for Iowa Donor Network, the state's official organ procurement organization. "Many other times, our nurses have been frustrated because they knew a person had checked 'yes' on a driver's license or carried a donor card, but the family still said 'no.'"

Prior to the new law, transplant coordinators needed written consent from a family member to honor a potential donor's wish. Now, they don't.

Sodders emphasizes that UAGA will not change how donor network staffers approach, educate, and console grieving families. Each year, the Iowa Donor Network receives more than 12,000 calls from hospital staff reporting deaths that may make organs available for donation. The network sends nurses to evaluate potential donors and discuss options with families.

While transplant professionals wholeheartedly support efforts to maximize organs and preserve the autonomy of donors, they remain sensitive to the needs of family members who are often mourning the unexpected death of a young person.

Transplant staff must strike a delicate balance between the urgency to act on behalf of a sick patient and respect for the bereaved. They need all their political and social skills to turn a horrific situation into a life-saving opportunity.