Her Son Only Lived 6 Days but Made a Lifetime of Change

When Sarah Gray learned, early in her pregnancy, that one of the identical twins she was carrying would not survive, she was devastated. She had to carry the sick baby to term in order to protect his healthy twin, so she made a decision that would end up changing her life and the lives of others.

"Instead of thinking of our son as a victim, I started thinking of him as a contributor to research, to science," she told Philly magazine.

In March 2010, Gray gave birth to sons Thomas and Callum. Although Callum was perfectly healthy, Thomas was born with only part of his brain. Gray spent the next six days caring for him until he died. Within hours, his organs were recovered and sent off.

Not satisfied with just donating his eyes, liver, and umbilical cord blood, Sarah soon began a quest to find out the impact, if any, Thomas had made.

Over the next five years, she traveled the nation to see what had become of her son's donations. What she found out was truly remarkable: his corneas, sent to a research institute affiliated with Harvard Medical School in Boston, were used in a study that could one day help cure corneal blindness.

James Zieske, the institute's senior scientist, said "infant eyes are worth their weight in gold" because of their regenerative properties. He also wrote to Gray: "Your visit helped to remind me that all the eyes we receive are an incredibly generous gift from someone who loved and cared about the person who provided the eyes. I thank you for reminding me of this."

At the Duke Center for Human Genetics in North Carolina, scientists made a unique discovery that, despite Thomas being an identical twin, the twins' cord blood had epigenetic differences that could one day help prevent his fatal defect. A biotech company called Cytonet used the baby's liver in a trial to determine the best temperature to freeze liver tissue. And at the University of Pennsylvania, his retinas were used in efforts to cure retinoblastoma, the most common form of children's eye cancer.

"Our son got into Harvard, Duke, and Penn," Gray said. "He has a job. He is relevant to the world."

Now, Sarah is the director of marketing for the American Association of Tissue Banks, where she makes it her life mission to encourage families to donate, not just for transplant, but for research. Often, doctors are too uncomfortable to ask when a child is dying, but, she notes, the result is life-changing in innumerable ways.

Just this week, in fact, a researcher at Pennsylvania showed her inside a locked refrigerator that housed hundreds of test tubes and pointed to two in particular that belonged to Thomas.

"It helped her get over the loss," Sarah's husband, Ross, said. "It was part of the healing process, seeing that there's still research going on five years after. His life was worthwhile. He's brought a lot of good to the world."