Mother uncovers lasting impact of baby son's organ donation

WASHINGTON -- An ultrasound showed one of Sarah Gray's unborn twins was missing part of his brain, a fatal birth defect.

His brother was born healthy, but Thomas lived just six days. Latching onto hope for something positive from the heartache, Gray donated some of Thomas' tissue for scientific research -- his eyes, his liver, his umbilical-cord blood.

Only no one could tell the Washington mother whether that donation made a difference. So Gray embarked on an unusual journey to find out, revealing a side of science laymen seldom glimpse.

"Infant eyes are like gold," a Harvard scientist told her.

"I don't think people understand how valuable these donations are," said Gray, who hadn't known until her yearslong quest brought her face-to-face with scientists. They had never met a relative of the donors so crucial to their work, either.

Families often find comfort in learning how many lives were saved if they donated a loved one's organs for transplant.

But donating a body for research gets less attention -- there are no headline-making "saves." Yet critical medical research in labs around the country depends on scientists' ability to work with human cells and organs, so they can study normal development and how disease does its dirty work.

"A lot of people, if the tissue doesn't get used for transplant, they think it's kind of second-rate tissue or something. I'd like them to know that people who do research with human tissue are doing worthwhile things that are going to, hopefully, lead to cures for all kinds of diseases," said Dr. James Zieske, a corneal specialist at Harvard and the Schepens Eye Research Institute, whose description of infant eyes spurred Gray's hunt.

Hoping to help other families facing similar decisions, Gray wrote a book, "A Life Everlasting, The Extraordinary Story of One Boy's Gift to Medical Science." Gray and two of the scientists she met in her quest spoke about donation for research.

Gray's obstetrician didn't think donation was an option for a baby with this birth defect, called anencephaly. Only when Gray persisted did she learn her baby's organs probably would be too small for transplant, but donation for research was an option.

Statistics from the United Network for Organ Sharing show organs from a dozen newborns, those younger than a month old, were donated last year for transplant.

On the research front, Dr. Arupa Ganguly of the University of Pennsylvania studies an eye cancer that attacks young children. Before receiving Thomas' tissue, she had waited six years for donation of a healthy young retina to compare with diseased ones.

Cells taken from younger tissue typically grow much better than an adult's, said Zieske, who could recall receiving infant corneas only two or three times in his career. Thomas' corneas were ordered to study how to repair blindness-inducing corneal damage.

In recovering tissue from deceased donors, hospitals consult a national registry of researchers' current needs.

On that day in 2010, Thomas died at home in his father's arms. The organ agency retrieved his body and recovered his eyes and liver. Blood from the umbilical cords of Thomas and his healthy identical twin Callum had been shipped to Duke University researchers studying anencephaly.

Two years later, all Gray knew was where Thomas' tissue had been shipped. So during a business trip to Boston, she called the Harvard-affiliated eye lab, identified herself as a donor mom and asked for a tour -- a first for the lab, and one that changed the scientists' perspective.

"I still think more about, when we get a donated cornea, who that came from," Zieske said.

Gray changed careers to work for the not-for-profit American Association of Tissue Banks. That brought her to a meeting where scientists debated whether it was ethical to test a new technology -- gene editing -- to fight inherited diseases.

"If you have the skills and the knowledge to fix these diseases, then freaking do it," she told the group, recounting how Thomas had suffered seizures each day of his brief life.