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A Life Everlasting: The Extraordinary Story of One Boy's Gift to Medical Science
A donor mother’s powerful memoir of grief and rebirth that is also a fascinating medical science whodunit, taking us inside the world of organ, eye, tissue, and blood donation and cutting-edge scientific research.
When Sarah Gray received the devastating news that her unborn son Thomas was diagnosed with anencephaly, a terminal condition, she decided she wanted his death—and life—to have meaning. In the weeks before she gave birth to her twin sons in 2010, she arranged to donate Thomas’s organs. Due to his low birth weight, they would go to research rather than transplant. As transplant donors have the opportunity to meet recipients, Sarah wanted to know how Thomas's donation would be used.
That curiosity fueled a scientific odyssey that leads Sarah to some of the most prestigious scientific facilities in the country, including Harvard, Duke, and the University of Pennsylvania. Pulling back the curtain of protocol and confidentiality, she introduces the researchers who received Thomas’s donations, held his liver in their hands, studied his cells under the microscope.
Sarah’s journey to find solace and understanding takes her beyond her son’s donations—offering a breathtaking overview of the world of medical research and the valiant scientists on the horizon of discovery. She goes behind the scenes at organ procurement organizations, introducing skilled technicians for whom death means saving lives, empathetic counselors, and the brilliant minds who are finding surprising and inventive ways to treat and cure disease through these donations. She also shares the moving stories of other donor families.
A Life Everlasting is an unforgettable testament to hope, a tribute to life and discovery, and a portrait of unsung heroes pushing the boundaries of medical science for the benefit of all humanity.
When Sarah Gray received the devastating news that her unborn son Thomas was diagnosed with anencephaly, a terminal condition, she decided she wanted his death—and life—to have meaning. In the weeks before she gave birth to her twin sons in 2010, she arranged to donate Thomas’s organs. Due to his low birth weight, they would go to research rather than transplant. As transplant donors have the opportunity to meet recipients, Sarah wanted to know how Thomas's donation would be used.
That curiosity fueled a scientific odyssey that leads Sarah to some of the most prestigious scientific facilities in the country, including Harvard, Duke, and the University of Pennsylvania. Pulling back the curtain of protocol and confidentiality, she introduces the researchers who received Thomas’s donations, held his liver in their hands, studied his cells under the microscope.
Sarah’s journey to find solace and understanding takes her beyond her son’s donations—offering a breathtaking overview of the world of medical research and the valiant scientists on the horizon of discovery. She goes behind the scenes at organ procurement organizations, introducing skilled technicians for whom death means saving lives, empathetic counselors, and the brilliant minds who are finding surprising and inventive ways to treat and cure disease through these donations. She also shares the moving stories of other donor families.
A Life Everlasting is an unforgettable testament to hope, a tribute to life and discovery, and a portrait of unsung heroes pushing the boundaries of medical science for the benefit of all humanity.
281 pages, Kindle Edition
First published September 27, 2016
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September 19, 2024
In 2009, Sarah Gray, 35, and her husband Ross, were ecstatic to learn that she was pregnant with twins. The road to parenthood opened ahead of them. But it was not long before Gray would be informed that one of her twins had a rare condition, anencephaly, a failure of the skull and brain to form properly, leaving the developing brain unprotected. The causes of this rare condition are not well understood. The diagnosis was grim. Thomas Ethan Gray’s life, if he got to have one at all, would be a very short one.
Sarah Gray - from TED talks
Gray was not your garden variety horrified parent-to-be. She was working at the time at the National Institute for the Severely Disabled, where she had established the AbilityOne Speakers Bureau (since renamed the SourceAmerica Speakers Bureau), helping secure speaking opportunities for disabled people of diverse sorts, and helping them craft their stories. Her mother was a nurse in Boston. She experienced the devastation anyone in her position would suffer. But Gray’s professional experience and connections, and access to medical intel from within her own family gave her a firmer base of knowledge from which to inform her response. When she realized that it would be possible for some of Thomas’s organs to be used to help others she set about making it happen, giving the loss she and her husband would experience and the short life her baby would know new meaning.
Gray’s case was unusual in that Thomas’s donations were used for research, not transplant. After a short period of time, she grew curious about how they were being put to use, so began tracking where they had gone. Once she identified the places, she started calling and asking to tour their facilities, a totally new thing for those labs. It is not unusual for the families of transplant donors to contact recipients, sometimes building lasting relationships, but it was pretty much unheard of for the families of organ donors to get in touch with research labs to see how the donations were being used.
Thomas Ethan Gray - from Radiolab
One thing Gray found on this quest was that the researchers were thrilled to hear from a donor’s family, heartily welcoming the interest. Unlike the transplant world, there is almost never a face or a name to put to a research donation. But lives are saved as a result of such gifts, particularly when there is an acute shortage of research material, which there often is.
There are several elements to A Life Everlasting. Sarah and Ross’s experience as expectant parents is beautifully told, and is as moving as one could hope for. There is enough stress entailed in having a first child. I know. But adding the harsh decisions that the couple had to face was truly a heavy burden. Thomas’s birth, short life, and passing are among the most moving passages I have ever read. Have a box of tissues at the ready.
Sarah with hubby, Ross, and son, Callum - from NBC News
But this is not, ultimately, a sad book. It is a hugely hopeful and uplifting one. And in Sarah Gray learning about what is possible, she educates us as well. She pushed the boundaries of what the families of donors could know, which will benefit not only those families, but everyone. When people are aware that their loved one’s remains might be able to help others, more are likely to choose donation instead of immediate burial. And researchers facing a shortage of needed materials will be better able to move ahead with their work if more people choose this option.
The book touches on some closely related topics as well. There are some inherent conflicts between the demand for transplantable organs and the need for many of the same organs for research. Gray points out some of the advances that such research has produced, using donations like Thomas’s. She also notes in closing the emergence of new gene editing technology (CRISPR) that may offer science the ability to repair genetic damage before a child is born. Gray’s position is very much pro. "If you have the skills and the knowledge to fix these diseases," Gray said at a 2015 conference on gene-editing, "then freaking do it." But opinions vary as to the overall risks involved in such tampering. There is considerable controversy about how such tools might be applied. I included a link about this in EXTRA STUFF.
As a result of her quest and the ensuing attention she was paid by local and national media, Gray moved on to a new position, as Director of Communications for the American Association of Tissue Banks. Today, she speaks regularly to professionals involved in organ donation. She has included in an appendix a long list of relevant links for those interested in learning more about organ/tissue donation.
You will be moved, learn a lot, and perhaps be inspired to consider becoming an organ donor yourself if you were not already. Sometimes even the smallest of donations, resulting from the saddest of circumstances, can reap huge benefits. A Life Everlasting is a gift to us all.
Publication date – September 27, 2016
Review first posted July 15, 2016
=============================EXTRA STUFF
Links to the author’s personal, Twitter, and FB pages
Gray’s TEDMED talk
There are many links in her site to talks she has given.
Interviews
----- RadioLab – Gray’s Donation
-----Thomas Gray lived six days, but his life has lasting impact - from Philly.com - "Instead of thinking of our son as a victim," she said, "I started thinking of him as a contributor to research, to science."
Science
-----CDC link on anencephaly. There are more than a thousand a year in the USA. There is no known cure or standard treatment for anencephaly. Almost all babies born with anencephaly will die shortly after birth.
-----On the new gene-editing tool CRISPR
-----Here is another on CRISPR, brought to our attention by GR pal Jan - THE GENE HACKERS by Michael Specter - in the November 16, 2015 issue of The New Yorker
Sarah Gray - from TED talks
Gray was not your garden variety horrified parent-to-be. She was working at the time at the National Institute for the Severely Disabled, where she had established the AbilityOne Speakers Bureau (since renamed the SourceAmerica Speakers Bureau), helping secure speaking opportunities for disabled people of diverse sorts, and helping them craft their stories. Her mother was a nurse in Boston. She experienced the devastation anyone in her position would suffer. But Gray’s professional experience and connections, and access to medical intel from within her own family gave her a firmer base of knowledge from which to inform her response. When she realized that it would be possible for some of Thomas’s organs to be used to help others she set about making it happen, giving the loss she and her husband would experience and the short life her baby would know new meaning.
Gray’s case was unusual in that Thomas’s donations were used for research, not transplant. After a short period of time, she grew curious about how they were being put to use, so began tracking where they had gone. Once she identified the places, she started calling and asking to tour their facilities, a totally new thing for those labs. It is not unusual for the families of transplant donors to contact recipients, sometimes building lasting relationships, but it was pretty much unheard of for the families of organ donors to get in touch with research labs to see how the donations were being used.
Thomas Ethan Gray - from Radiolab
One thing Gray found on this quest was that the researchers were thrilled to hear from a donor’s family, heartily welcoming the interest. Unlike the transplant world, there is almost never a face or a name to put to a research donation. But lives are saved as a result of such gifts, particularly when there is an acute shortage of research material, which there often is.
There are several elements to A Life Everlasting. Sarah and Ross’s experience as expectant parents is beautifully told, and is as moving as one could hope for. There is enough stress entailed in having a first child. I know. But adding the harsh decisions that the couple had to face was truly a heavy burden. Thomas’s birth, short life, and passing are among the most moving passages I have ever read. Have a box of tissues at the ready.
Sarah with hubby, Ross, and son, Callum - from NBC News
But this is not, ultimately, a sad book. It is a hugely hopeful and uplifting one. And in Sarah Gray learning about what is possible, she educates us as well. She pushed the boundaries of what the families of donors could know, which will benefit not only those families, but everyone. When people are aware that their loved one’s remains might be able to help others, more are likely to choose donation instead of immediate burial. And researchers facing a shortage of needed materials will be better able to move ahead with their work if more people choose this option.
"The way I see it our son got into Harvard, Duke, and Penn. He has a job. He is relevant to the world. I only hope my life can be as relevant." - from the Philly.com articleGray adds the stories of some other people, including parents of donors, and a beneficiary of research that advanced life-extending treatment as a result of having access to such donations. Each is moving in its own way, and together, they support the message that many more people need to be aware of the potential benefits to be had from donations of this sort. Losing a child is all too common. Unfortunate things happen, but there can still be some silver linings to even the darkest clouds.
The book touches on some closely related topics as well. There are some inherent conflicts between the demand for transplantable organs and the need for many of the same organs for research. Gray points out some of the advances that such research has produced, using donations like Thomas’s. She also notes in closing the emergence of new gene editing technology (CRISPR) that may offer science the ability to repair genetic damage before a child is born. Gray’s position is very much pro. "If you have the skills and the knowledge to fix these diseases," Gray said at a 2015 conference on gene-editing, "then freaking do it." But opinions vary as to the overall risks involved in such tampering. There is considerable controversy about how such tools might be applied. I included a link about this in EXTRA STUFF.
As a result of her quest and the ensuing attention she was paid by local and national media, Gray moved on to a new position, as Director of Communications for the American Association of Tissue Banks. Today, she speaks regularly to professionals involved in organ donation. She has included in an appendix a long list of relevant links for those interested in learning more about organ/tissue donation.
You will be moved, learn a lot, and perhaps be inspired to consider becoming an organ donor yourself if you were not already. Sometimes even the smallest of donations, resulting from the saddest of circumstances, can reap huge benefits. A Life Everlasting is a gift to us all.
Publication date – September 27, 2016
Review first posted July 15, 2016
=============================EXTRA STUFF
Links to the author’s personal, Twitter, and FB pages
Gray’s TEDMED talk
There are many links in her site to talks she has given.
Interviews
----- RadioLab – Gray’s Donation
-----Thomas Gray lived six days, but his life has lasting impact - from Philly.com - "Instead of thinking of our son as a victim," she said, "I started thinking of him as a contributor to research, to science."
Science
-----CDC link on anencephaly. There are more than a thousand a year in the USA. There is no known cure or standard treatment for anencephaly. Almost all babies born with anencephaly will die shortly after birth.
-----On the new gene-editing tool CRISPR
-----Here is another on CRISPR, brought to our attention by GR pal Jan - THE GENE HACKERS by Michael Specter - in the November 16, 2015 issue of The New Yorker
November 14, 2016
I received this wonderful book through the Goodreads giveaways - when I read the blurbs for it, I was absolutely certain that, if I didn't win it, I would be buying it. The story had me captivated from the start, following Sarah and her husband Ross through their meeting, courtship (long distance), marriage and then the joy of joys, finding out they were pregnant. The sorrow that quickly followed on their behalf, when the condition of one of the twins, Thomas, was discovered, then turned to amazement at the wonderful way that Sarah and Ross turned that sorrow into purpose, into acceptance and into something approaching joy, at the gift they were giving to medical science and research - the goal, to spare another parent, another child, another life - well, I have always been designated as a donor on my driver registratons, but, I made sure that my family were ALL immediately aware of my wishes should the unforeseen happen. This book is a gift, Thomas' brief life and death, and the aftermath, were a gift, and the author, Sarah Gray, is a gift to mankind and medicine - may she and Ross be blessed many times over. I passed this book along to my nephew's fiancee, who is active in the Donate Life program in OH (her father went thru illness, transplant and death), and I definitely encourage and challenge anyone who reads this review to purchase the book when it becomes available, read it and become a donor or volunteer or activist - this life, and this world are too short and temporary to take this gift to the grave. To LIFE!
September 3, 2016
I received an advanced copy of this book through a Good Reads giveaway. This book is a very emotional ride for the first half. The description of the author's experiences, which led to the writing of this book, are heartbreaking. There is a lot of hope in the book. Once the book gets beyond the story of Thomas's death, it is an interesting look into the world of organ and tissue donation for both transplantation and science. The book concentrates on the research aspect of donations for scientific purposes. This look takes the reader behind doors which are usually closed to the general public and makes a case for opening those doors. It also brings up the argument for more scientific research donations to take place. I highly recommend this book to those who want to know where organ and tissue donations go.
January 29, 2017
A heart wrenching story of a child's death and a mothers journey, first to find places for his organs and then to see the benefits that Thomas has brought into the world during his so short life. Writing is good, but can get very technical at times. Moving and inspirational.
September 23, 2016
One of my selections for "Best Non-Fiction of 2016"
A LIFE EVERLASTING is the story of Thomas Ethan Gray. Thomas only lived for a few days, but he had--and continues to have--an impact in helping medical researchers around the world.
Thomas' story begins in a doctor's office, with the physician giving the expectant mother the bad news: “I’m sorry to tell you that Baby A has a lethal birth defect.” Of the twins, one baby would be fine; the other twin, "Baby A," would not survive for long after birth. For reasons unknown, Baby A, who would be named, "Thomas," had developed anencephaly, a lethal condition. He might not even survive birth.
Of course, the news was devastating to the family, and especially to Sarah: "Giving birth to one healthy baby and one dead baby seemed like a sick joke.. What did I ever do to deserve this?" Nevertheless, Sarah eventually adjusted to the tragic news, and decided to do something positive--something that would create something good out of a tragic circumstance: "I decided that if Thomas’s death was inevitable, at least it could be productive. If our suffering helped mitigate the future suffering of just one other parent, then that was better than nothing."
Thomas did not die immediately after birth, but did pass just a few days after. As the family planned, his organs were made available to different research organizations. The story of Thomas didn't stop there, however. Sarah decided to do something unique--she decided to track down what happened to Thomas' organs. She wanted to see how they arrived, where they went, and how they were used.
Not sure of what her response would be, Sarah began calling the labs, explaining that her son had donated organs for their research. At the labs, the author was met with surprised, but kindly people who appreciated what her son had done. Perhaps the most poignant encounter was when Sarah met the scientist who had used parts of Thomas' eyes in important research. Here, Sarah learned something surprising about Thomas' donation. It turned out that her son's organs were "much more valuable than I had even dared imagine. . . His donation exposed me to a world of scientific and medical advancements I would not have even imagined before."
One researcher explained to Sarah how valuable Thomas' eyes were: "Infant eyes are like gold to us.” Another scientist echoed the same thing about his retinas: "It had been the first healthy infant retina sample her lab had ever received, and it was vital to her work." Thomas' retinas were used in researching deadly cancer that affected young children.
The author later received a wonderful gift. Thomas' corneas had been used in a research study, and the authors sent her a copy of the study.
Through her journey, Sarah found new meaning in the brief life of her son. Thomas' life was more than just a few short days: "He has a job. He has coworkers. He has colleagues. He is a partner in their research, and relevant in this community. . . Maybe, thanks at least in part to him, babies of the future wouldn’t suffer from the awful affliction that took his own life. I was so proud of my son."
I found A LIFE EVERLASTING to be a wonderful book, and a cherished tribute to this little soul who lived such a short life, but continues to help so many. Here is how Thomas' mother sums it up:
"My son Thomas Ethan Gray donated his eyes, liver, and cord blood to medical research; in his short but treasured life, he contributed to the advancement of modern medicine. I only hope my life can be as relevant."
Amen to that.
http://www.bassocantor.com/blog/2016/...
A LIFE EVERLASTING is the story of Thomas Ethan Gray. Thomas only lived for a few days, but he had--and continues to have--an impact in helping medical researchers around the world.
Thomas' story begins in a doctor's office, with the physician giving the expectant mother the bad news: “I’m sorry to tell you that Baby A has a lethal birth defect.” Of the twins, one baby would be fine; the other twin, "Baby A," would not survive for long after birth. For reasons unknown, Baby A, who would be named, "Thomas," had developed anencephaly, a lethal condition. He might not even survive birth.
Of course, the news was devastating to the family, and especially to Sarah: "Giving birth to one healthy baby and one dead baby seemed like a sick joke.. What did I ever do to deserve this?" Nevertheless, Sarah eventually adjusted to the tragic news, and decided to do something positive--something that would create something good out of a tragic circumstance: "I decided that if Thomas’s death was inevitable, at least it could be productive. If our suffering helped mitigate the future suffering of just one other parent, then that was better than nothing."
Thomas did not die immediately after birth, but did pass just a few days after. As the family planned, his organs were made available to different research organizations. The story of Thomas didn't stop there, however. Sarah decided to do something unique--she decided to track down what happened to Thomas' organs. She wanted to see how they arrived, where they went, and how they were used.
Not sure of what her response would be, Sarah began calling the labs, explaining that her son had donated organs for their research. At the labs, the author was met with surprised, but kindly people who appreciated what her son had done. Perhaps the most poignant encounter was when Sarah met the scientist who had used parts of Thomas' eyes in important research. Here, Sarah learned something surprising about Thomas' donation. It turned out that her son's organs were "much more valuable than I had even dared imagine. . . His donation exposed me to a world of scientific and medical advancements I would not have even imagined before."
One researcher explained to Sarah how valuable Thomas' eyes were: "Infant eyes are like gold to us.” Another scientist echoed the same thing about his retinas: "It had been the first healthy infant retina sample her lab had ever received, and it was vital to her work." Thomas' retinas were used in researching deadly cancer that affected young children.
The author later received a wonderful gift. Thomas' corneas had been used in a research study, and the authors sent her a copy of the study.
Through her journey, Sarah found new meaning in the brief life of her son. Thomas' life was more than just a few short days: "He has a job. He has coworkers. He has colleagues. He is a partner in their research, and relevant in this community. . . Maybe, thanks at least in part to him, babies of the future wouldn’t suffer from the awful affliction that took his own life. I was so proud of my son."
I found A LIFE EVERLASTING to be a wonderful book, and a cherished tribute to this little soul who lived such a short life, but continues to help so many. Here is how Thomas' mother sums it up:
"My son Thomas Ethan Gray donated his eyes, liver, and cord blood to medical research; in his short but treasured life, he contributed to the advancement of modern medicine. I only hope my life can be as relevant."
Amen to that.
http://www.bassocantor.com/blog/2016/...
April 15, 2021
Halfway , it seems like an advertisement where she mentioned too many names and organisations involved.
But yea, between a donor and the recipient, theres a whole lot of procedure need to go through , a lot of people involved. Hundreds maybe and they all contribute something back to the society and advancement in the science and medical line.
How about you huh? Have you ever do something significant to others ? (Me scolding myself for being an inactive cocoon) even my respected guru said ‘stand up and be counted.’
Do something worthwhile. When you give back to others , you’re not only helping them , but yourself as well.
Okay back to the story.
James Selby’s Jr.’s poem,
For me to live ,
You had to die.
While my family rejoiced,
Your family cried.
It is a story of a couple , Ross and Sarah who were expecting a child but surprisingly get twins. Their happiness didnt last long as they found out one of the babies had an anencephaly (a neural tube defect) that usually result in death for few hours to day after born.
‘I had thought that if I was a decent person and follow the rules , my life would go as expected’
Nope it isnt.
At the same page , she realized that ‘none of us is really “supposed to have” anything. Life is more random than that. ‘
And that is the truth. Life is like opening a Pandora box. We never know what we will get , who we will meet what will happen before we died. Thats just how life works and we need to be grateful and live it as it is and worked out for the best.
‘I came to realize that we should have no expectations about how long we will live. ‘
Thats why when people are grieving we should be there to support them , not to condemn and ask them to be happy instead. The time will come for acceptance for now, just let them grief in their own way.
In the end she attached of the organ donors site to all the places in America. Makes me wonder do Malaysia have this kind of organisation too? How ignorant am I for not knowing this things.
7 jan 2019 in our newspaper wrote that Malaysia is one of the country with the least amount of organ donors.
To save a life even after death , is purely a noble things to do. Not everyone have the courage to donate their organs to others. There’s a lot of people need it , if I can help even one person , especially after I die , well , I’ll be a happy corpse.
Advocate of the importance of donating organs not just for transplantation but for researchers to find out how to treat the disease. The awareness of organ donation is still minimum between our societies but nowadays they’re increasing thanks to the internet where people can search about it asap.
The deceased is a human too. Once someone who lived life just like us. They’re somebody. Even in death , respect is a must. I remember when we’re in our first year studying anatomy with dead bodies. The curiosity of who are they , what happened before they died ? Does their family know they were here?
And then theres this particular day where I was having a selfie with my friends in the cadaver room , our teacher reminds us that this is disrespectful to the bodies present there. We should be more empathy and sensitive towards them. Them being dead doesn’t diminish their rights as human being. They provide their bodies for us the new generations to learn and for that we should be thankful. For all the knowledge we get from them.
Thank you for this beautiful mindful book. We can learn so much about organ donation , the process , the pathway. Easier for the family and the doctors to work together to achieve the means. Not kept things hidden for confidentiality even to the donors not knowing where and how their organs doing.
But yea, between a donor and the recipient, theres a whole lot of procedure need to go through , a lot of people involved. Hundreds maybe and they all contribute something back to the society and advancement in the science and medical line.
How about you huh? Have you ever do something significant to others ? (Me scolding myself for being an inactive cocoon) even my respected guru said ‘stand up and be counted.’
Do something worthwhile. When you give back to others , you’re not only helping them , but yourself as well.
Okay back to the story.
James Selby’s Jr.’s poem,
For me to live ,
You had to die.
While my family rejoiced,
Your family cried.
It is a story of a couple , Ross and Sarah who were expecting a child but surprisingly get twins. Their happiness didnt last long as they found out one of the babies had an anencephaly (a neural tube defect) that usually result in death for few hours to day after born.
‘I had thought that if I was a decent person and follow the rules , my life would go as expected’
Nope it isnt.
At the same page , she realized that ‘none of us is really “supposed to have” anything. Life is more random than that. ‘
And that is the truth. Life is like opening a Pandora box. We never know what we will get , who we will meet what will happen before we died. Thats just how life works and we need to be grateful and live it as it is and worked out for the best.
‘I came to realize that we should have no expectations about how long we will live. ‘
Thats why when people are grieving we should be there to support them , not to condemn and ask them to be happy instead. The time will come for acceptance for now, just let them grief in their own way.
In the end she attached of the organ donors site to all the places in America. Makes me wonder do Malaysia have this kind of organisation too? How ignorant am I for not knowing this things.
7 jan 2019 in our newspaper wrote that Malaysia is one of the country with the least amount of organ donors.
To save a life even after death , is purely a noble things to do. Not everyone have the courage to donate their organs to others. There’s a lot of people need it , if I can help even one person , especially after I die , well , I’ll be a happy corpse.
Advocate of the importance of donating organs not just for transplantation but for researchers to find out how to treat the disease. The awareness of organ donation is still minimum between our societies but nowadays they’re increasing thanks to the internet where people can search about it asap.
The deceased is a human too. Once someone who lived life just like us. They’re somebody. Even in death , respect is a must. I remember when we’re in our first year studying anatomy with dead bodies. The curiosity of who are they , what happened before they died ? Does their family know they were here?
And then theres this particular day where I was having a selfie with my friends in the cadaver room , our teacher reminds us that this is disrespectful to the bodies present there. We should be more empathy and sensitive towards them. Them being dead doesn’t diminish their rights as human being. They provide their bodies for us the new generations to learn and for that we should be thankful. For all the knowledge we get from them.
Thank you for this beautiful mindful book. We can learn so much about organ donation , the process , the pathway. Easier for the family and the doctors to work together to achieve the means. Not kept things hidden for confidentiality even to the donors not knowing where and how their organs doing.
February 21, 2021
So, this book made me cry, repeatedly, and surprisingly, in a good way. I'd had this book on my to-read pile for a while and I was reluctant to read it because books about dead babies don't exactly make for fun, light reading. Thankfully, this book, while heartbreaking at times, is also filled with hope and gratitude. After learning that one of her twin sons had a fatal condition and would not live long, the author made the decision to donate his remains to medical research and this book tells the tale of how those donations were used and the incredible resulting research. There's a lot of information about how organ donation works, the medical research which can only be done with human tissue donation, and intriguing hope for treatments made possible by donations. And yes, I'm sentimental enough that a story about people helping others and medical research that leads to curing disease brings me tears of joy.
dnf
February 9, 2020DNF. Kinda boring and then I lost the book while packing so. Rip.
July 7, 2017
In my world of reviewing hundreds of transplant related books, A Life Everlasting stands out not only for its very engaging writing style but especially its unique subject matter. In spite of the tragic loss of one of their newly born twins, Sarah Gray succeeds in sharing her celebration of the contribution that comes out of a realization of the impact that his life of only a six days is making in the world of science and medical research.
What begins as a hopeful story of typical family growth in expecting twins turns tragic when one of the in vitro babies, given the name Thomas, is found to have anencephaly, a terminal condition involving birth with an exposed brain. The foundation story may move the reader to tears in its telling (I cried while reading the birthing story), but their courage in finding some positive outcome in a decision to donate his organs, eyes and blood to research carries us into the uniqueness of this book as Sarah searches for how those donations come to be used.
The search takes her into uncharted territory as such donations typically move through as anonymous sources, various ‘gifts’ (as such donations are known) going to different research organizations with government mandated tracking codes that protect the anonymity of the donors, yet still provide ways to communicate back up the chain if health issues arise, but not to the donor family. Against such odds, Sarah is driven to first, identify the organizations that received Thomas’ gifts, then to contact each and convince researchers to open up to contact and sharing of how those gifts are used in improving treatments in the future when research is successful. It is in the individual stories of Sarah’s search that we find how unique it is for those organizations to ever encounter and eventually meet their donor families. Sarah succeeds in inviting us along as she faces and overcomes each obstacle blocking her from making that connection. Researchers who daily work with anonymous source specimens as an object of study are moved in encountering the human family and person behind that donation in a very rewarding and touching description of the encounters. Very special relationships develop from those encounters and that becomes the heart touching core that makes this beautifully written book so unique and enjoyable.
The author explains much of the organ and tissue donation process and even complex medical topics in clear and user friendly terms, many included in a helpful appendix listing of abbreviations and acronyms. Her family’s story is complimented by several other donor families’ stories (I cried with Jodi’s story too) that are included to broaden the conceptual understanding of how impactful research donations are to living patients and the future of medicine in general. We also get to hear firsthand from recovery staff what it is like for them to participate in organ and tissue recoveries, supporting the donor families at their time of tragedy, another powerful insight seldom visible to the general public. In a closing Resources section the author lists helpful contact information and advice for donor families and organ/tissue transplant recipients, including contact information for the 58 organ procurement organizations that serve across the United States.
Anyone involved in organ and tissue donation – including transplant patients and families, organ procurement staff and medical professionals that benefit from research – will be moved and educated from this very open sharing. But donor families, especially those who are asked to donate to research when their gifts are not able to be used directly for transplant, will take a new positive outlook in responding to that question, or if that is in their past, an appreciation of how helpful their decision was (or could have been) when originally asked.
Be prepared in that Sarah’s powerful and touching storytelling that brought me to tears more than once, so have tissues handy. As she reminds us, “People say, ‘No parent should have to bury a child.’ But there is no should in life.” Coming to accept that fact ‘was good enough for me. Until it wasn’t.’ And that led her to find the missing pieces of the puzzle that results in the amazing journey we join with her in reliving this very inspiring story of a life’s impact and meaning no matter how long one lives. Sarah, thank you for allowing us to come along side you in this amazing life experience, and especially for sharing your own “Dreamworld” vision in the book’s Epilogue, a must read to the very end.
What begins as a hopeful story of typical family growth in expecting twins turns tragic when one of the in vitro babies, given the name Thomas, is found to have anencephaly, a terminal condition involving birth with an exposed brain. The foundation story may move the reader to tears in its telling (I cried while reading the birthing story), but their courage in finding some positive outcome in a decision to donate his organs, eyes and blood to research carries us into the uniqueness of this book as Sarah searches for how those donations come to be used.
The search takes her into uncharted territory as such donations typically move through as anonymous sources, various ‘gifts’ (as such donations are known) going to different research organizations with government mandated tracking codes that protect the anonymity of the donors, yet still provide ways to communicate back up the chain if health issues arise, but not to the donor family. Against such odds, Sarah is driven to first, identify the organizations that received Thomas’ gifts, then to contact each and convince researchers to open up to contact and sharing of how those gifts are used in improving treatments in the future when research is successful. It is in the individual stories of Sarah’s search that we find how unique it is for those organizations to ever encounter and eventually meet their donor families. Sarah succeeds in inviting us along as she faces and overcomes each obstacle blocking her from making that connection. Researchers who daily work with anonymous source specimens as an object of study are moved in encountering the human family and person behind that donation in a very rewarding and touching description of the encounters. Very special relationships develop from those encounters and that becomes the heart touching core that makes this beautifully written book so unique and enjoyable.
The author explains much of the organ and tissue donation process and even complex medical topics in clear and user friendly terms, many included in a helpful appendix listing of abbreviations and acronyms. Her family’s story is complimented by several other donor families’ stories (I cried with Jodi’s story too) that are included to broaden the conceptual understanding of how impactful research donations are to living patients and the future of medicine in general. We also get to hear firsthand from recovery staff what it is like for them to participate in organ and tissue recoveries, supporting the donor families at their time of tragedy, another powerful insight seldom visible to the general public. In a closing Resources section the author lists helpful contact information and advice for donor families and organ/tissue transplant recipients, including contact information for the 58 organ procurement organizations that serve across the United States.
Anyone involved in organ and tissue donation – including transplant patients and families, organ procurement staff and medical professionals that benefit from research – will be moved and educated from this very open sharing. But donor families, especially those who are asked to donate to research when their gifts are not able to be used directly for transplant, will take a new positive outlook in responding to that question, or if that is in their past, an appreciation of how helpful their decision was (or could have been) when originally asked.
Be prepared in that Sarah’s powerful and touching storytelling that brought me to tears more than once, so have tissues handy. As she reminds us, “People say, ‘No parent should have to bury a child.’ But there is no should in life.” Coming to accept that fact ‘was good enough for me. Until it wasn’t.’ And that led her to find the missing pieces of the puzzle that results in the amazing journey we join with her in reliving this very inspiring story of a life’s impact and meaning no matter how long one lives. Sarah, thank you for allowing us to come along side you in this amazing life experience, and especially for sharing your own “Dreamworld” vision in the book’s Epilogue, a must read to the very end.
February 6, 2017
The author had a anencephalic child, one of identical twins (the other is normal). The affected child died (as anencephalics do) after birth. The author went to great lengths to find meaning in her dying child's life, either through organ donation or some other means. As it turns out, his tissues became parts of research projects through a research donation, not being suitable for donation. At the time the author approved the donation, it was a fairly unusual event. In the book she describes the her husband and her experiences of the short life of the affected child, and her quest to find out what happened to the research samples, to the extent of going to research institutes to meet the investigators involved. As a scientist, I was gratified that her experiences were very positive both for her and her family and also for the researchers. Personally, I also thank her for her book and her story, which will hopefully encourage others to participate in donation. In the book, the author's story is interspersed with several other stories detailing participation in tissue donation and one story on a clinical trial. The book got a little repetitious but the passion of the author for the topic certainly shines through.
December 24, 2016
One of Sarah Gray's babies was diagnosed with anencephaly, a fatal birth defect. Her brave memoir is a moving and honest account of her grief and donation of her baby's tissue for research purposes. It is an eye-opening account of how rare donor tissue is made eligible and allocated, as well as how desperately vital it is to develop medications and learn about other diseases. Sarah follows the route of her son's donated tissue and develops poignant relationships with the grateful researchers at world class medical institutions. While it is not uncommon for donor families to connect with organ recipients, the researchers Sarah met never received such request and identified the tissue by anonymous identification codes. The clinical barrier of privacy and researcher distance is broken down, cultivating compassionate relationships which underscore the generosity and profundity of both the donation and research. This is an important story and I have the utmost respect for Mrs. Gray and her advocacy, but I sobbed through most of it.
August 31, 2016
I thought this book was amazing. To find out you were pregnant with twins only to then find out that one of them was going to die. I could not imagine how that family felt. Then to be faced with the decision they had to make is a parents worst nightmare. Their decision to donate his organs to medical research so his life had meaning was so inspiring. They turned something so heartbreaking into joy. Which is a lesson we all need to learn and be reminded of. This book made me very proud to be an organ donor. My parents never wanted to be so when I told them that I was going to be they weren't very happy. I think if more people read this book they might change their minds. I love the part in this book that said "Donating had lifted my burden, not made it heavier" I try to spend my life helping other people and knowing that when I die my organs could still help people is a piece of mind. I will be recommending this book to my friends!
November 28, 2016
I received an ARC of A Live Everlasting from Shelf Awareness. Thank you. Emotional, heart wrenching, uplifting. The author's ability to relate what happened to their family is overwhelming. I appreciated how she moved from such a possibly horrible event into a quest of helping others. While the detail about the organizations slowed the flow of the book, I think it was important to include.
February 17, 2017
I enjoyed the first half of the book better which was more of her memoir about having her son and then discovering how his body was used to help others. At the end, it seemed to get more rambling and less focused on the general field of organ donation and recovery for science and I felt the message was less strong.
November 20, 2016
10 stars! The title states it all. This is indeed a remarkable story about a twin, Thomas, who was diagnosed as having anencephaly, a terminal condition. He was not expected to live once he was born. His skull stopped near his eyebrows and his brain was exposed at the top. It was a miracle that he survived six days. To read what his mother did to achieve Thomas' place in medical science is remarkable.
I was so impressed with the book that I looked up Sarah Gray on goodreads to ask her a question and found out that she is currently writing another book. I cannot wait to read it.
For science and medical lovers, you will be engrossed plus there are several case studies. I couldn't put the book down once I started reading it.
My thanks to Will for writing such an excellent and compelling review.
I was so impressed with the book that I looked up Sarah Gray on goodreads to ask her a question and found out that she is currently writing another book. I cannot wait to read it.
For science and medical lovers, you will be engrossed plus there are several case studies. I couldn't put the book down once I started reading it.
My thanks to Will for writing such an excellent and compelling review.
January 12, 2018
Doomed at conception, Thomas Ethan Gray’s outlook to survive until birth is very slim. Early sonogram previewed a lethal neural tube defect of Baby A. His identical twin Baby B was normal but his life could be endangered as the growth of the twin’s progress. After a failed termination of Baby A to increase the survival of Baby B, parents Ross and Sarah Gray were determined to carry the twins and find consolation in the growth, the abnormality, and the soon-to-be brief life of Thomas, not just for them, but for his twin Callum too. This is the inspiring story and on-going research of this magnificent baby that was recorded from cord blood, eye, and liver donation. Numerous advancements, research, and documented evidence accompanies the Gray family’s journey in the past five years-one that twin Callum will be proud of his entire life!
November 21, 2017
A couple's six-day-old son dies, and they agree to donate body parts and tissue to research. Later, the mother, Sarah Gray, decides to find out where each of the parts have gone and what research is involved. It's not hard to compare this book with The Immortal Life of Henrietta Lacks, as both stories involve medical research. Henrietta's cells were harvested and preserved without her family's consent or knowledge, and when the family learns about it decades later, they are confused and bewildered. Sarah's journey from lab to lab is a celebration for her. Both families, however, come to the conclusion that their loved one lives on as a partner in research, continuing to touch lives long after their deaths.
May 4, 2020
I went through this book in a day which is unusual, especially since I was crying for the first section of it. I found this heartbreaking story nicely written and it moves quickly so you aren’t crying for the whole thing as she moves into the world of donor research. I appreciated the author’s viewpoints of why bad things happen and she doesn’t try to explain it away with God. I think her view of whole body donation might be a bit too rosy as someone who has worked with cadavers and in medical centers, and there are more flaws in the donation process than she pointed out. But, overall, I agree with the importance of donation and the often overlooked piece of donating to research if not to people.
January 1, 2023
tbvh i cried! it's so heartbreaking to read those poor babies and mothers and their families to go through these painful moments. it is such an eye opening memoir to read about the importance of organ donation and how these organ donations are so vital bcs even the tiniest of cells can save and help so many people. i am just astonished to read about the author's journey as a mother losing her baby so young, becoming a donor parent and now an advocate for organ, eye, tissue & blood donation! def recommended for medical students and healthcare workers and anyone who is interested in knowing how donations, transplants can be such an impact in someone's life!
November 27, 2016
I really enjoyed this book, and had heard of the story from the author's radio interviews. As a children's hospital chaplain, I've accompanied many families through the process of organ donation and seen the meaning and comfort it brings. This book taught me a lot about the great needs and possibilities when organs and tissue are donated for research. Great book not just about the behind-the-scenes process of research dependent on organ and tissue donation, but also about the way a mom finds meaning and purpose after the death of her child.
July 12, 2017
Coming from a research lab where we accept pediatric organ donations for research, this book really hit home for me. It is an awesome gift that is truly irreplaceable in the world of science. Thank you to all families, organizations, doctors, staff, and anyone who is involved in the process of organ procurement and donation. It is incredible just how many people are involved in the effort to continue and further research from organ donation. An incredible and humbling read. Five stars doesn't say enough.
March 26, 2018
Another medical book that I stumbled upon right after I read Being Mortal. A mother conceives twins, identical, but one of them has most of his brain missing. The couple find out very early on in the pregnancy. They plan to try to abort the child to protect the other little boy. At the last minute, this did not happen. So she carried both children to term. It was riveting reading when it came to the birth of the boys.
The title explains the book. The author worked so hard finding out how her son's short life has been so helpful in medical research.
The title explains the book. The author worked so hard finding out how her son's short life has been so helpful in medical research.
November 2, 2019
The story of Sarah's twin pregnancy. Early in her pregnancy, she found out one of her identical twin boys had a fatal neural tube defect. They struggled with knowing the birth of Callum would mean the death of Thomas. They started to look into medical research and organ donation for Thomas, in hopes that their suffering would benefit others. They were able to donate his cord blood for a study at Duke, his corneas and his liver cells for research. Sarah was able to find out where his organs went and able to visit those places and find out about what they do and what research is being done.
August 30, 2017
A touching story with an inspiring message. This family took their grief and channelled it into a mission to spread the word about organ and tissue donation.
Be an organ donor! Be a tissue donor! Join a research study while you're still kicking! You have an opportunity to help advance medical science while you're still here, and to leave a legacy behind that's much greater than just rotting away six feet under.
Be an organ donor! Be a tissue donor! Join a research study while you're still kicking! You have an opportunity to help advance medical science while you're still here, and to leave a legacy behind that's much greater than just rotting away six feet under.
January 17, 2021
This is a true story. A young family discovers that they are expecting twins. During one of the office visits, they receive heart breaking news. One of the twins has a horrible birth defect. Even though the baby lives a few days, the tissues are used for research. Thus the child lives for ever. I learned so much from this book. Even though I was emotional during the reading of the book, the author/mother tells much about research that is being done.
September 15, 2025
This novel opened my eyes to more meaningful "Final Wishes."
I was deeply moved in reading this novel. I have worked in the medical field for over 35 years...from renal transplants, to cardiac anomalies, and lastly joint replacements.
I applaud the author for her perseverance in getting the answers she needed and becoming a powerful advocate for research. Sharing her personal story with the medical world...something not many lay people would have dared to attempt. Bravo!!!
I was deeply moved in reading this novel. I have worked in the medical field for over 35 years...from renal transplants, to cardiac anomalies, and lastly joint replacements.
I applaud the author for her perseverance in getting the answers she needed and becoming a powerful advocate for research. Sharing her personal story with the medical world...something not many lay people would have dared to attempt. Bravo!!!
July 5, 2017
This book was very well written. I got overwhelmed by all of the transplant organizations named etc... but that is not the authors fault. It definitely shined light on how important donation to research is. It was amazing to read about how something so positive could come out of something so heartbreaking.
October 9, 2017
A very uplifting, detailed documentary, from the viewpoint of the mother of a newborn organ donor that changed numerous medical practices. Although extremely scientific, it remained easy to understand. I would recommend to anyone who has lost a loved one and contributed to the organ donor program because it shows the way the healing process can be beautiful.
February 15, 2018
The story is touching and the writing is excellent. However, as the book progressed it felt that it was about the mother’s feeling and satisfying her sense of pride rather than telling the story of the child.i understand the enormity of the situation but the mother disposition at times seemed to be self serving.
There is wealth of information in this book.
There is wealth of information in this book.
June 18, 2018
Thanks for the great book, one all should read to see what one donation can do for medical research, she gave so many reasons for donations for the future. What a brave woman she is to have gone through this traumatic experience and used it to further medical research. She should make a change in anyone's life who reads it.
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