How the Dead Give Life
by Fran Withrow
Sarah Gray was overjoyed to find out she was pregnant with twins in 2010. However, one twin, Thomas, was diagnosed in utero with anencephaly, a fatal illness in which part of the brain and skull does not develop, and the infant dies shortly after birth.
This was devastating news, but Gray and her husband decided to make sure that Thomas’ short life counted for something. They chose to donate his body for research. She and her husband did so as a way of commemorating Thomas’ life, while simultaneously welcoming the birth of his healthy twin brother, Callum.
This was not enough for Gray, whose gift of her son to science felt incomplete. Though she knew Thomas was helping others, she did not know exactly how. So she went on a quest to discover where her son’s donated organs and tissues ended up. Her quest became this book: an insider’s peek into organ donation, research laboratories, and cutting edge medical advances.
Gray began by asking to meet with researchers and found that, incredibly, no one had ever made this request before. She became a trailblazer: visiting researchers, touring their labs, learning what valuable work they were doing, and giving the laboratory staff members a face—Thomas’—to put on the cells under their microscopes.
Gray discovered not only how Thomas’ tissues were used, but also how critical viable, healthy human organs are for researchers. Some projects wait years for the arrival of appropriate human organs to advance their studies. One such researcher is Dr. Arupa Ganguly, who received Thomas’ retinas for his studies of retinoblastoma, a rare cancer typically found in very young children. Healthy tissue, particularly from infants, is difficult to obtain. It is so valuable that some researchers only use part of what they receive, as scientists did with Thomas’ liver, and freeze the rest for a later date. They don’t know when, or if, they will ever get another sample.
Gray also gives examples of how researchers, using donated whole bodies and tissues, have made crucial advances in the treatment of critical illnesses and disease. Her description of how Scotty Bolleter and a company called Vidacare used an infant donor to redesign a device for inserting IV’s in critically ill children, as well as for teaching how to secure an airway in such tiny bodies, was riveting.
Bolleter waited an astounding eight years for a donor and the chance to prove that his device worked and could save lives.
Exploring what happens to donors, especially to Thomas, so profoundly changed Gray that she left her job and became director of communications for the American Association of Tissue Banks. She does not push anyone to become an organ donor, but her quote from Rebecca Cummings-Suppi, manager of tissue recovery and preservation at Gift of Life Donor Program in Philadelphia, summed it up for me.
“I don’t believe in putting anything of value in the ground. Whether it’s a diamond ring that can be passed down to another generation, or if it’s tissue for transplant or research,” she said. “That’s how cures happen.”
“A Life Everlasting: The Extraordinary Story of One Boy’s Gift to Medical Science”
by Sarah Gray