|photo: Mark Walpole|
Sarah Gray is a donor parent and an organ, eye, tissue and blood donation advocate. She is director of communications for the American Association of Tissue Banks (AATB) in McLean, Va., and regularly speaks around the country. She lives in Washington, D.C., with her husband, Ross, and their son, Callum, and daughter, Jocelyn. We spoke with Gray about her passion for donation advocacy and how far her family has come in their journey of discovery. Their story is told in Gray's memoir, A Life Everlasting: The Extraordinary Story of One Boy's Gift to Medical Science (HarperOne).
What's the difference between donation for research versus donation for transplant?
Donation for transplant means that the organ, eye or tissue that is donated will be surgically implanted into another person to help improve or save their life. Patients who receive a transplant typically need this because a disease or a trauma damaged or destroyed their own tissue. The end goal of a transplant is to restore function in one person. From a donor's perspective, the upside of transplants is you may be responsible for saving or improving the lives of many, and there is potential that your family could meet these people, if they like. The downsides are that not every transplant is a success. Also, a transplant is like a Band-Aid; it fixes one person's symptoms.
Donation for research means that the organ, eye or tissue will be studied by researchers instead of being surgically implanted into a patient. The researchers are typically trying to understand why a disease functions the way it does so they can cure it or improve treatment. The downsides are that research takes months or years to produce results, and research involves trying many things that do not work before they discover what works. Your donation could show them something that does not work. The upsides are that even evidence that something does not work is an extremely valuable piece of information. And a donation for research is a step toward a cure, vaccine or treatment that can help thousands or millions of people. Your donation could be an important part of medical history, and could possibly mean that some people might never need transplants in the first place.
Tell us about your decision to visit the research institutes that received your son Thomas's donations.
The first visit, to Schepens Eye Research Institute, was a little intimidating. I wasn't sure if I was going to be welcome or not, but I decided I had to at least ask. Once I realized how positive the experience could be and how welcome I was, it was easier to contact the other facilities and basically invite myself over.
Why did you decide to write a book about your experience?
I had done some media interviews about different parts of the story, but the story kept going and going, and new things kept happening. I decided to write a book because it was getting harder to explain in one or two minutes, and I was being approached by people from all different walks of life who said that the story resonated with them--bereaved parents, research professionals, people with adoption experiences and people struggling with disease and involved in clinical trials. Writing it was difficult at times but also therapeutic. It helped me metabolize what happened and put some distance between where I am now and where I was then.
What do you tell Callum about his twin brother, Thomas?
My family is different from others, so what works in our family will not work for everyone. Ross and I decided from the beginning that we would never hide Thomas from Callum. We tell Callum that his brother died, and that dying is a normal part of life. Everyone will die at some point, but no one really knows when they will die. Usually you are older, but sometimes younger people die, if they have a disease or get in an accident. It is okay to be sad. I think my discoveries about Thomas's contributions have given my family something unexpected to be proud of.
How do Thomas's life and his gifts to science continue to affect you today?
I made one big change three years after he died: I switched careers. I am now the director of communications for the American Association of Tissue Banks. I continue to advocate for donation for research by speaking at conferences, helping with neonatal donor cases and serving on a variety of donation and biospecimen-related committees. I was honored to help Eversight, the largest eye bank consortium in the country, as they developed a new program to help donor families meet researchers. I am often contacted out of the blue by organ procurement groups who would like help arranging neonatal research donations and communicating with sensitivity, and I am honored to be able to help.
You encourage other donor families to share their stories with you. Do you have a favorite you can share?
Yes--one family in California heard our story on Radiolab. A few months later, they had twins and, unfortunately, one of them died unexpectedly. Because of the Radiolab story, the parents asked about donation for research. Their child was able to donate eight different tissues for research studies. The retinas actually went to the exact same study that Thomas's went to, so the donations are likely in the same freezer. These retina donations are extremely rare, so I was glad that Thomas's donation inspired that.
What's your next project?
We have had some inquires about turning the book into a play and a film. In addition, I am writing another book about other anonymous medical donations. For example, in childbirth with the twins, I received a transfusion from the blood of about 10 people. I have their donor ID numbers, and I am working on being able to meet these people and say thank you. Also, Ross and I just had another baby--a girl, Jocelyn. I was able to donate the placenta to be used as skin grafts for up to four burn survivors. I hope to track the donations and possibly meet the recipients. Also, we donated the umbilical cord and cord blood to a study at the Cleveland Clinic. I hope to be able to track that as well, and help increase awareness of these kinds of donations. Jocelyn received donated breast milk in the hospital, and I would like to see if I can meet the people who donated that milk as well. I might not be successful, but you never know. It's worth a try. --Jaclyn Fulwood