Also published on this date: Shelf Awareness for Monday, August 29, 2016

Monday, August 29, 2016: A Life Everlasting

HarperOne: A Life Everlasting by Sarah Gray

HarperOne: A Life Everlasting by Sarah Gray HarperOne: A Life Everlasting by Sarah Gray HarperOne: A Life Everlasting by Sarah Gray

A Life Everlasting: The Extraordinary Story of One Boy's Gift to Medical Science

by Sarah Gray

" 'I'm so sorry, Mr. Gray. When was the death?' the funeral director asked.
" 'We don't know,' Ross said. 'He's not even born yet.' "

Sarah Gray, director of communications for the American Association of Tissue Banks, shares the life-altering journey that began with the death of her child and resulted in more hope and healing than she could have ever imagined. A heart-smashing tragedy, a medical mystery, and an emotional journey, A Life Everlasting traces Gray's path as she discovers the ins and outs of the less-sung side of organ and tissue donation, that of donation to research causes. Readers will find inspiration in this story from a mother who gave her baby's life the purpose he would never have the opportunity to seek for himself.

Gray's relationship with her husband, Ross, began like something out of a romantic comedy: the American tourist meeting the handsome Scotsman in a pub during a scavenger hunt for someone called Nigel. After a transatlantic romance, the lovebirds married, settled in Washington, D.C., and prepared to start a family. Although they took two years to get pregnant, the first ultrasound showed twice the expected level of success--Gray was carrying identical twins. Despite the initial shock and worry about the cost of raising two children at once, the parents-to-be told their mothers the news with a sense of elation and started shopping for a bigger place to live. The doctor recommended a first trimester screening since, at 35, Gray fell into the "mothers of advanced age" category and therefore ran a heightened risk of conceiving a child with a birth defect. Before the appointment, the Grays did research and worried slightly that the babies might have Down syndrome, one of the most common issues. They certainly weren't prepared for the doctor's pronouncement: " 'I'm sorry to tell you that Baby A has a lethal birth defect.' "

Baby B had developed normally, but Baby A had anencephaly, a developmental defect that causes the skull to form incorrectly, leaving the brain exposed. Babies with the defect die in utero or shortly after birth; no correction for the flaw currently exists. In a flash, Gray's elation plummeted, replaced by self-recriminations. She wondered if she had somehow caused the condition, perhaps by using a hot spring on vacation before she realized she was pregnant.

Gray began to speculate: " 'Maybe after the birth, we could donate the baby's body to science?' " When her doctor told her it would be impossible, she let the question go. The couple took their home off the market and moved forward, preparing for the birth and homecoming of one baby, whom they named Callum, and the death and funeral of the other, whom they called Thomas. However, Sarah never quite forgot about the idea of donation for research, and so when she heard about a study at the Duke Center for Human Genetics that used cord blood from infants with anencephaly, she volunteered to donate Thomas's after the birth. When she learned about a family donating a deceased infant's liver cells, she called her local organ-procurement organization and asked to do the same. She realized, "A terrible thing was about to happen, but I was building meaning around it. This helped."

After the birth of the twins and Thomas's subsequent death, his donations traveled far and wide to various research facilities. At first, Gray comforted herself with the thought that she would see her departed son again in the afterlife. Before long, however, this assurance lost its efficacy, and she began "to feel like a piece of the puzzle was missing." At a donor-family support group meeting, she found herself experiencing "transplant envy," jealousy that families of transplant donors got to meet the donations' recipients. She realized she needed to know what had happened to her child's donations--where they went, who had used them and in which studies, and how they had benefited medical research.

Eventually, Gray picked up the phone and embarked on an odyssey to some of the finest research laboratories in the country, including the Schepens Eye Research Institute, which received Thomas's corneas; Duke University Medical Center, which received his cord blood; and Cytonet, a biotech company that received his liver. She toured facilities, asked questions and, most incredibly, met the researchers who study the mortal remains of her lost little boy, the professionals she considers "all the people who were part of his life now." Ross and Callum began to accompany her as well. Every step of the journey helped the family to heal as they saw the researchers' reverence for Thomas's contributions and heard how much good his donations had done toward finding cures and treatments for liver diseases, anencephaly, and corneal damage. Gray's plan for Thomas had paid dividends in ensuring his brief life was not in vain.

Gray provides an engaging, accessible look at a part of the medical field few laypeople ever see, clearly conveying her sense of wonder at the new discoveries it enables. She also explains how the red tape of privacy regulations safeguards information but can also create barriers to a donor family's access to their loved one's final story. Anecdotes describing similar situations in other families help to broaden the reader's view of the diverse options and emotional rewards awaiting families who feel donation is right for their circumstances. Gray advocates for greater education and connection between donor families and donation recipients. Some of the most touching parts of A Life Everlasting are the connections she made with the medical professionals studying her son's organs and cells, leading her to decide "[t]hey had been wondering about us, too." For the researchers, the chance to meet a donor family means the chance to thank the people whose generosity makes their work possible, and Gray's stories of the warm welcome her family found belies any stereotype of the cold, distant lab scientist.

Gray's passion for advancing awareness of donation for research is palpable, and the anecdotal and statistical evidence she offers to demonstrate the impact on medical science makes her fervor both understandable and contagious. Her account of Thomas's life is refreshingly honest and devoid of self-pity, adding a layer of extra depth to the tragedy as the reader can feel the maturity and strength she gained from surviving it. While her openness forces one to fully absorb the sorrow of the story's beginning, it also serves as the perfect conduit for an enlightening walk through a scientific world that might seem opaque and confusing in other hands. Concluding with information about donation resources, Gray's story is a moving memoir and a taut read about an option worthy of education and consideration. --Jaclyn Fulwood

HarperOne, $27.99, hardcover, 288p., 9780062438225, September 27, 2016

HarperOne: A Life Everlasting by Sarah Gray

Sarah Gray: Proud and Grateful

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

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