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Nebraska donors make lasting contributions to medical research

March 13, 2019

Zackary Williams was a strong, determined and happy little boy — especially considering he was born with a rare heart defect called T.A.P.V.R. as well as pulmonary hypertension.

Despite beginning his life with machines that helped him breathe and acquiring brain damage after open-heart surgery, “what he had on the inside of his body never showed on the outside,” said his dad Richard Myers.

Richard and Zackary’s mother, Andi Williams, continued to watch their young boy beat the odds and live a life full of smiles, happiness and human connection.

But in June 2018 shortly after summer break had started, Zackary was back in the hospital. His heart and lungs began to get worse, and he went into cardiac arrest. When the doctors told Andi there was nothing more they could do, she and Richard only needed 30 minutes to decide what they would do next.

They decided to move forward with organ donation in the hopes that Zackary could save and heal others.

And he did just that. Zackary’s kidney went to a father of four children.

His pancreas was recovered for research purposes.

“Zackary was here for a reason,” Andi said of her first-born son. “His whole life I’ve known he was supposed to teach somebody something, and now after his death he’s able to do that.”

One organ donor has the potential to save eight lives, and one tissue donor could heal and enhance the lives of more than 100 people.

These statistics are known within the donation community and are beginning to spread farther as people learn more about donation.

But something many might not realize about donation is the ability for a donor to affect many more than hundreds of people. This can happen through research.

When a potential donor is identified, many medical tests take place to determine which organs and tissues are suitable for transplantation to someone in need, either on the transplant list or in need of healing procedures or surgeries.

When a donor is cleared to donate but not all organs are suitable for transplantation, a donor’s story doesn’t have to end there. The organs and tissues not suitable for transplant may be donated for research purposes instead.

“Even though the benefit of research isn’t immediate like transplantation, it does benefit all humankind by helping understand disease processes, evaluating medicine efficacy, etc.,” said Live On Nebraska’s Chief Operations Officer Tom Woodford.

This ability and profound impact on medicine is something many family members and loved ones of a potential donor find healing.

“Our donor families want their loved one to help as many people as possible,” said Family Services Manager Amanda Brewer.

Brewer and her team of family support coordinators work with families and loved ones throughout the entire donation process and provide 13 months of aftercare following a donor’s donation.

“Medical research and education are another way to touch the lives of others,” Brewer added.

In cases where organs and tissues are donated for research purposes, the donor family receives information about the research project or projects through the donor family aftercare program, including how the research will help develop new medications, develop treatments or lead to understanding a disease process.

It’s an ability that heals families and loved ones and is not lost on medical professionals, either.

While the immediate effects of an organ transplant can be seen by many and certainly has a profound effect on the recipient and their loved ones, research could lead to an even greater benefit, according to several Nebraska doctors.

“A lot of times if you donate a kidney and it gets someone off dialysis or if you donate an artery or a vein and that takes over temporarily for an infected bypass, transplanting that organ or tissue is great and very helpful,” said Dr. Alexey Kamenskiy. “But if you donate for research, it’s not instant gratification, but years down the road it could be the thing that eliminates dialysis and the need for transplant at all, potentially changing the lives for millions of people.”

Live On Nebraska sent 60 organs to research professionals in 2018. Twenty-seven organs were recovered for research in 2017, and 32 were recovered in 2016.

In addition to the six organs that can be donated for transplant, Live On Nebraska has provided many other organs and tissues for research and education, including stomachs, esophagus, testes, ovaries and bladders.

Live On Nebraska also participates in neonatal research. In the same instances when a child has been identified as a donor but not all organs are suitable for transplant, those organs and tissues are recovered for research.

Researchers have been using recovered livers from these newborn donors to find potential cures for disease or to find a way to successfully complete organ transplantation later.

These are just several uses of organs and tissues for research and education, which have lasting impacts on the medical field.

Many times, researchers have access to diseased or animal tissue but not healthy human tissue to conduct research, Woodford said. Therefore, they don’t have good controls for their research.

“Our donors, even though an organ cannot be transplanted, still do not have certain disease processes, therefore making the non-transplantable organ suitable for research and medical education,” Woodford said.

Live On Nebraska also received the University of Nebraska Medical Center Community Service to Research Award March 5. Live On Nebraska was nominated by Kamenskiy and Dr. Jason MacTaggart of UNMC. In the past five years, Nebraska tissue donors have contributed 574 arteries to these doctors’ research projects to learn more about arterial disease and lifesaving techniques. With the donated tissue samples, they have been able to build the largest collection of arteries in the world.

The difference donation makes

After going through the entire process of organ donation and donation for research, Andi and Richard now advocate for donation and hope to encourage others to register as donors.

Not only did the donation of Zackary’s organs provide closure and healing knowing their son’s story continued, but Andi and Richard also recognize the importance of the need of transplantations and lifesaving procedures.

Had Zackary been healthier, he would have been listed for a heart transplant to save his life.

“We won’t be able to see him or smell his hair again, but to know that we as parents did everything in our power, that sealed the deal for us,” Richard said. “You don’t realize whose life you’ll change through donation. Life is precious. We know that more than ever, and Zackary taught us that.”

You can make a difference and register as an organ, tissue and eye donor at http://www.nedonation.org/register-now.

This is part one of an eight-part series outlining the ways organ and tissue donors from Nebraska benefit many through research projects. Look for next week’s contribution discussing one of two projects that give insight into artery disease.

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