TEDMED 2015
Sarah Gray: How my son's short life made a lasting difference
莎拉•格雷: 我儿子短暂的一生如何造就了永恒的改变
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莎拉•格雷未出生的儿子托马斯被诊断出患有大脑缺失症——一种致命的疾病，她决定将这一家庭悲剧转变为非凡的馈赠，捐赠儿子的器官用于科学研究。她分享自己在失去中寻找意义的旅程，将希望传播给其他不幸的家庭，通过这种方式向生命和科学发现致敬。
Sarah Gray - Researchers' dream donator
Sarah Gray found meaning in tragic loss by donating the organs of her newborn son to advance scientific research. Full bio
Sarah Gray found meaning in tragic loss by donating the organs of her newborn son to advance scientific research. Full bio
Double-click the English transcript below to play the video.
00:13
I was three months pregnant with twins
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当我怀上双胞胎3个月后，
00:16
when my husband Ross and I
went to my second sonogram.
went to my second sonogram.
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我和丈夫罗斯一起
去做第二次超声波检查。
去做第二次超声波检查。
00:21
I was 35 years old at the time,
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当时我35岁，
00:23
and I knew that that meant
we had a higher risk
we had a higher risk
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我知道这意味着有很大风险
00:26
of having a child with a birth defect.
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我们的孩子会有先天缺陷。
00:29
So, Ross and I researched
the standard birth defects,
the standard birth defects,
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于是我跟罗斯
了解了一下常见的先天缺陷，
了解了一下常见的先天缺陷，
00:32
and we felt reasonably prepared.
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觉得自己已经准备好了。
00:35
Well, nothing would have prepared us
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但我们万万没有想到，
00:37
for the bizarre diagnosis
that we were about to face.
that we were about to face.
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等待我们的是这样的结果。
00:42
The doctor explained
that one of our twins, Thomas,
that one of our twins, Thomas,
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医生告诉我们
其中一个孩子托马斯，
其中一个孩子托马斯，
00:45
had a fatal birth defect
called anencephaly.
called anencephaly.
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患有一种致命的先天疾病
叫大脑缺失症。
叫大脑缺失症。
00:49
This means that his brain
was not formed correctly
was not formed correctly
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他的大脑发育不完整，
00:52
because part of his skull was missing.
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缺少一部分颅骨。
00:55
Babies with this diagnosis
typically die in utero
typically die in utero
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患有这种疾病的婴儿一般无法出生，
00:59
or within a few minutes, hours
or days of being born.
or days of being born.
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即使出生也会很快夭折。
01:05
But the other twin, Callum,
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而另一个孩子，卡勒姆，
01:08
appeared to be healthy,
as far as the doctor could tell,
as far as the doctor could tell,
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根据医生的诊断，看起来很健康，
01:12
and these twins were identical,
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但这两个孩子可是双胞胎啊，
01:16
genetically identical.
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他们的基因完全相同。
01:20
So after a lot of questions about
how this could have possibly happened,
how this could have possibly happened,
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为什么会这样，我们感到疑惑不解，
01:24
a selective reduction was mentioned,
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我们讨论了选择性流产的方案，
01:27
and while this procedure
was not impossible,
was not impossible,
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尽管有可能成功，
01:30
it posed some unique risks
for the healthy twin and for me,
for the healthy twin and for me,
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但我和健康的那个孩子
要冒很大风险，
要冒很大风险，
01:35
so we decided to carry
the pregnancy to term.
the pregnancy to term.
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于是我们决定不做流产手术。
01:39
So there I was, three months pregnant,
with two trimesters ahead of me,
with two trimesters ahead of me,
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这就是当时我的处境，怀孕三个月，
还有六个月要等，
还有六个月要等，
01:43
and I had to find a way to manage
my blood pressure and my stress.
my blood pressure and my stress.
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我还要想办法
控制自己的血压和心理压力。
控制自己的血压和心理压力。
01:49
And it felt like having a roommate
point a loaded gun at you for six months.
point a loaded gun at you for six months.
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那感觉就像有一个人在你房间，
整整六个月拿着一把上膛的枪对着你
整整六个月拿着一把上膛的枪对着你
01:55
But I stared down
the barrel of that gun for so long
the barrel of that gun for so long
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但我盯着枪口看了那么久
02:00
that I saw a light
at the end of the tunnel.
at the end of the tunnel.
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居然从枪管的尽头看到了一丝曙光。
02:03
While there was nothing we could do
to prevent the tragedy,
to prevent the tragedy,
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既然悲剧已无法避免，
02:06
I wanted to find a way
for Thomas's brief life
for Thomas's brief life
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我想让托马斯短暂的生命
02:09
to have some kind of positive impact.
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能产生些积极的影响。
02:11
So I asked my nurse about organ,
eye and tissue donation.
eye and tissue donation.
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于是我询问了
护士关于器官捐赠的事情。
护士关于器官捐赠的事情。
02:16
She connected with our local
organ-procurement organization,
organ-procurement organization,
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她帮我联系了
当地一家器官移植机构，
当地一家器官移植机构，
02:19
the Washington Regional
Transplant Community.
Transplant Community.
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“华盛顿地区器官移植联合体”。
02:23
WRTC explained to me
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他们跟我解释说，
02:25
that Thomas would probably be too small
at birth to donate for transplant,
at birth to donate for transplant,
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托马斯太小了，
他的器官不适合用来移植，
他的器官不适合用来移植，
02:30
and I was shocked:
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我非常震惊：
02:31
I didn't even know
you could be rejected for that.
you could be rejected for that.
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我根本没想过捐赠也能被拒绝。
02:33
But they said that he would be
a good candidate to donate for research.
a good candidate to donate for research.
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但他们告诉我，也许
捐赠给研究机构会比较合适。
捐赠给研究机构会比较合适。
02:38
This helped me see Thomas in a new light.
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这让我看到了新的希望。
02:40
As opposed to just a victim of a disease,
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托马斯不仅仅是一名患者，
02:43
I started to see him as a possible key
to unlock a medical mystery.
to unlock a medical mystery.
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还有可能成为一项医学奇迹的关键。
02:48
On March 23, 2010,
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2010年3月23日，
02:51
the twins were born,
and they were both born alive.
and they were both born alive.
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两个孩子顺利出生了。
02:55
And just like the doctor said,
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正如医生诊断那样，
02:57
Thomas was missing
the top part of his skull,
the top part of his skull,
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托马斯头顶的颅骨缺了一块，
03:00
but he could nurse,
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但他照样能喝奶，
03:02
drink from a bottle,
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用奶瓶喝，
03:03
cuddle and grab our fingers
like a normal baby,
like a normal baby,
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能像普通的宝宝一样抓我们的手指，
03:07
and he slept in our arms.
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躺在我们怀里睡觉。
03:10
After six days, Thomas died in Ross's arms
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6天以后，托马斯
在罗斯的怀中离开了我们，
在罗斯的怀中离开了我们，
03:13
surrounded by our family.
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我们全家人都陪着他。
03:16
We called WRTC, who sent a van to our home
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我们给WRTC打电话，
他们派来一辆车，
他们派来一辆车，
03:21
and brought him to Children's
National Medical Center.
National Medical Center.
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把托马斯带到了
国家儿童医学中心。
国家儿童医学中心。
03:24
A few hours later, we got a call to say
that the recovery was a success,
that the recovery was a success,
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几个小时之后，我们接到电话，
事情进展得很顺利，
事情进展得很顺利，
03:28
and Thomas's donations
would be going to four different places.
would be going to four different places.
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托马斯的器官
被送到了四个不同的机构。
被送到了四个不同的机构。
03:32
His cord blood would go
to Duke University.
to Duke University.
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他的脐带血被送到了杜克大学。
03:35
His liver would go to a cell-therapy
company called Cytonet in Durham.
company called Cytonet in Durham.
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他的肝脏被送到了达勒姆
一家细胞治疗公司，叫Cytonet。
一家细胞治疗公司，叫Cytonet。
03:40
His corneas would go
to Schepens Eye Research Institute,
to Schepens Eye Research Institute,
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他的角膜被送到了
斯格本斯眼科研究院，
斯格本斯眼科研究院，
03:43
which is part of Harvard Medical School,
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从属于哈佛医学院，
03:45
and his retinas would go
to the University of Pennsylvania.
to the University of Pennsylvania.
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他的视网膜被送到了
宾夕法尼亚大学。
宾夕法尼亚大学。
03:50
A few days later, we had a funeral
with our immediate family,
with our immediate family,
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几天后，我们举行了一个葬礼，
只有直系亲属参加，
只有直系亲属参加，
03:54
including baby Callum,
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包括小卡勒姆，
03:56
and we basically
closed this chapter in our lives.
closed this chapter in our lives.
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我们几乎算是将这一段翻篇儿了。
03:59
But I did find myself wondering,
what's happening now?
what's happening now?
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但我老是在想，事情怎么样了？
04:03
What are the researchers learning?
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那些学者们发现什么了吗？
04:05
And was it even worthwhile to donate?
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托马斯的遗体捐赠真的值得吗？
04:09
WRTC invited Ross and I
to a grief retreat,
to a grief retreat,
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WRTC邀请罗斯和我
参加了一个互助会，
参加了一个互助会，
04:12
and we met about
15 other grieving families
15 other grieving families
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见到了其他15个不幸的家庭，
04:15
who had donated their loved one's
organs for transplant.
organs for transplant.
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他们都将自己亲人
的器官捐赠了出去。
的器官捐赠了出去。
04:19
Some of them had even received letters
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有些人甚至收到了信，
04:21
from the people who received
their loved one's organs,
their loved one's organs,
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来自那些接受捐赠的人，
04:24
saying thank you.
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向他们表示感谢。
04:27
I learned that they
could even meet each other
could even meet each other
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我了解到他们甚至可以见面
只要双方都签一份弃权声明，
04:29
if they'd both sign a waiver,
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就像开放式领养一样。
04:30
almost like an open adoption.
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04:32
And I was so excited,
I thought maybe I could write a letter
I thought maybe I could write a letter
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我非常兴奋，我觉得我也可以写信
或者让他们给我写，
来了解事情的进展。
来了解事情的进展。
04:35
or I could get a letter
and learn about what happened.
and learn about what happened.
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但后来我很失望，因为我了解到
04:38
But I was disappointed to learn
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只有那些捐赠器官
用于移植手术的人才能这么做。
用于移植手术的人才能这么做。
04:39
that this process only exists
for people who donate for transplant.
for people who donate for transplant.
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04:43
So I was jealous.
I had transplant envy, I guess.
I had transplant envy, I guess.
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我很嫉妒。嫉妒那些器官移植的人。
04:46
(Laughter)
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（笑声）
04:48
But over the years that followed,
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但在接下来的几年里，
04:50
I learned a lot more about donation,
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我越来越了解器官捐赠，
04:52
and I even got a job in the field.
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甚至在这领域找到了一份工作。
04:54
And I came up with an idea.
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我有了一个念头。
04:57
I wrote a letter that started out,
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我写了一封邮件，开头是这样的，
04:59
"Dear Researcher."
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“亲爱的研究者，”
05:02
I explained who I was,
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我介绍了我自己，
05:04
and I asked if they could tell me
why they requested infant retinas
why they requested infant retinas
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问他们可不可以告诉我，
为什么在2010年3月的时候，
为什么在2010年3月的时候，
05:08
in March of 2010,
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需要新生儿的视网膜，
05:10
and I asked if my family
could visit their lab.
could visit their lab.
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我还请求带家人参观他们的实验室。
05:13
I emailed it to the eye bank
that arranged the donation,
that arranged the donation,
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我把这封邮件发给了
当初安排捐赠的眼睛库，
当初安排捐赠的眼睛库，
05:17
the Old Dominion Eye Foundation,
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“弗吉尼亚眼睛基金会”，
05:19
and asked if they could
send it to the right person.
send it to the right person.
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请他们把这封邮件转发给相关人员。
05:22
They said that they had
never done this before,
never done this before,
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他们说以前从未做过类似事情，
05:24
and they couldn't guarantee a response,
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不保证能得到回应，
05:26
but they wouldn't be an obstacle,
and they would deliver it.
and they would deliver it.
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但他们会帮我把邮件转发出去。
05:30
Two days later, I got a response
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两天后，我收到了回应，
05:32
from Dr. Arupa Ganguly
of the University of Pennsylvania.
of the University of Pennsylvania.
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来自宾夕法尼亚大学
的阿鲁帕•甘古丽博士。
的阿鲁帕•甘古丽博士。
05:36
She thanked me for the donation,
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她对我们的捐赠表示感谢，
05:38
and she explained
that she is studying retinoblastoma,
that she is studying retinoblastoma,
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她说自己在研究视网膜母细胞瘤，
那是一种致命的视网膜肿瘤，
05:41
which is a deadly cancer of the retina
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05:42
that affects children
under the age of five,
under the age of five,
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主要影响5岁以下的孩子，
05:45
and she said that yes,
we were invited to visit her lab.
we were invited to visit her lab.
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而且她同意邀请
我们参观她的实验室。
我们参观她的实验室。
05:48
So next we talked on the phone,
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之后我们通了电话，
05:50
and one of the first things she said to me
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她对我说的第一件事就是
05:52
was that she couldn't possibly
imagine how we felt,
imagine how we felt,
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她无法想象我们经历了什么，
05:55
and that Thomas had given
the ultimate sacrifice,
the ultimate sacrifice,
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托马斯做出了巨大的牺牲，
05:57
and that she seemed
to feel indebted to us.
to feel indebted to us.
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她觉得自己亏欠我们很多。
06:00
So I said, "Nothing against your study,
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我说，“并不是针对你的研究，
06:03
but we didn't actually pick it.
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但真的不是我们自己选的。
06:05
We donated to the system,
and the system chose your study.
and the system chose your study.
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我们只是进行了捐赠，
是系统选择了你的研究。”
是系统选择了你的研究。”
06:09
I said, "And second of all,
bad things happen to children every day,
bad things happen to children every day,
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我说，“而且，
每天都有许多孩子经历不幸，
每天都有许多孩子经历不幸，
06:14
and if you didn't want these retinas,
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如果你们不用这些视网膜，
06:16
they would probably
be buried in the ground right now.
be buried in the ground right now.
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它们也不过是长埋于地下。
06:18
So to be able to participate in your study
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因此，能够参与你们的研究，
06:22
gives Thomas's life
a new layer of meaning.
a new layer of meaning.
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也算是托马斯生命的另一层意义。
06:25
So, never feel guilty
about using this tissue."
about using this tissue."
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所以，千万不要觉得亏欠我们。”
06:29
Next, she explained to me how rare it was.
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之后，她向我解释一切发生得太巧。
06:32
She had placed a request
for this tissue six years earlier
for this tissue six years earlier
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她在6年前就向
“国家疾病研究交流中心”
“国家疾病研究交流中心”
06:36
with the National Disease
Research Interchange.
Research Interchange.
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提交了视网膜需求申请。
06:39
She got only one sample of tissue
that fit her criteria,
that fit her criteria,
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而她收到的唯一符合标准的样本，
06:42
and it was Thomas's.
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就来自托马斯。
06:44
Next, we arranged a date for me
to come visit the lab,
to come visit the lab,
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随后，我们需要确定
参观实验室的时间，
参观实验室的时间，
06:48
and we chose March 23, 2015,
which was the twins' fifth birthday.
which was the twins' fifth birthday.
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我们选择了2015年3月23日，
就在双胞胎5岁生日当天。
就在双胞胎5岁生日当天。
06:54
After we hung up, I emailed her
some pictures of Thomas and Callum,
some pictures of Thomas and Callum,
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打完电话，我给她发了
托马斯和卡勒姆的照片，
托马斯和卡勒姆的照片，
06:58
and a few weeks later,
we received this T-shirt in the mail.
we received this T-shirt in the mail.
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几周后，
我们收到了他们寄来的T恤。
我们收到了他们寄来的T恤。
07:03
A few months later, Ross, Callum
and I piled in the car
and I piled in the car
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几个月后，罗斯、
卡勒姆和我收拾行装，
卡勒姆和我收拾行装，
07:05
and we went for a road trip.
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开车上路。
07:07
We met Arupa and her staff,
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我们见到了阿鲁帕和她的团队，
07:10
and Arupa said that when I told her
not to feel guilty, that it was a relief,
not to feel guilty, that it was a relief,
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阿鲁帕说，当我告诉她
不要觉得亏欠时她真的松了一口气，
不要觉得亏欠时她真的松了一口气，
07:14
and that she hadn't seen it
from our perspective.
from our perspective.
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她以前从来没有
像我们一样来看这件事。
像我们一样来看这件事。
07:18
She also explained that Thomas
had a secret code name.
had a secret code name.
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她还告诉我们
托马斯有一个秘密代号。
托马斯有一个秘密代号。
07:22
The same way Henrietta Lacks
is called HeLa,
is called HeLa,
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就像亨瑞艾塔•拉克丝
被称为“海拉”一样，
被称为“海拉”一样，
07:26
Thomas was called RES 360.
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托马斯被称作RES 360。
07:29
RES means research,
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RES是指“研究”，
07:30
and 360 means he was the 360th specimen
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360是指他是
整个项目进行10年来
整个项目进行10年来
07:34
over the course of about 10 years.
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第360个样本。
07:37
She also shared with us a unique document,
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她还给我们展示了一份独特的文件，
07:41
and it was the shipping label
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是当年的运输标签，
把托马斯的视网膜
从华盛顿运到费城。
从华盛顿运到费城。
07:43
that sent his retinas
from DC to Philadelphia.
from DC to Philadelphia.
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07:48
This shipping label
is like an heirloom to us now.
is like an heirloom to us now.
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这个运输标签现在
成了我们的传家宝。
成了我们的传家宝。
07:52
It's the same way that a military medal
or a wedding certificate might be.
or a wedding certificate might be.
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它的意义就如
军功章或者结婚证一般。
军功章或者结婚证一般。
07:56
Arupa also explained that she is using
Thomas's retina and his RNA
Thomas's retina and his RNA
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阿鲁帕还告诉我们，她利用
托马斯的视网膜和RNA
托马斯的视网膜和RNA
08:02
to try to inactivate the gene
that causes tumor formation,
that causes tumor formation,
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试图让形成肿瘤的基因失活，
08:05
and she even showed us some results
that were based on RES 360.
that were based on RES 360.
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她还展示了根据RES 360
得到的一些研究成果。
得到的一些研究成果。
08:09
Then she took us to the freezer
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然后她把我们带到冷冻柜前，
08:11
and she showed us the two samples
that she still has
that she still has
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给我们看她依然保存的两个样本，
08:15
that are still labeled RES 360.
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上面的标签写着RES 360。
08:17
There's two little ones left.
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那是两份很小的样本。
08:19
She said she saved it
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她说之所以保存它们
08:21
because she doesn't know
when she might get more.
when she might get more.
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是因为她不知道什么时候
能再找到合适的样本。
能再找到合适的样本。
08:24
After this, we went to the conference room
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随后我们来到会议室，
08:26
and we relaxed and we had lunch together,
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休息了一会，一起吃午饭，
08:29
and the lab staff presented Callum
with a birthday gift.
with a birthday gift.
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实验室工作人员
送给卡勒姆一份生日礼物。
送给卡勒姆一份生日礼物。
08:34
It was a child's lab kit.
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是一套儿童试验装备。
08:36
And they also offered him an internship.
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他们还给了他一个实习的机会。
08:38
(Laughter)
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（笑声）
08:42
So in closing, I have two
simple messages today.
simple messages today.
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最后，我想传递两个简单的信息。
08:45
One is that most of us probably
don't think about donating to research.
don't think about donating to research.
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第一，我们大部分人可能从未想过
捐赠器官用于研究。
捐赠器官用于研究。
08:49
I know I didn't.
I think I'm a normal person.
I think I'm a normal person.
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因为我以前就没想过，
我也是个普通人。
我也是个普通人。
08:52
But I did it.
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但我这样做了。
这是一次不错的经历
我建议你们也试试，
我建议你们也试试，
08:53
It was a good experience,
and I recommend it,
and I recommend it,
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它给我的家庭带来了平静。
08:55
and it brought my family a lot of peace.
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08:57
And second is if you work
with human tissue
with human tissue
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第二，如果你从事人体器官研究，
09:00
and you wonder about the donor
and about the family,
and about the family,
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考虑一下捐赠者和他们的家庭，
09:03
write them a letter.
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联系一下他们。
09:04
Tell them you received it,
tell them what you're working on,
tell them what you're working on,
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告诉他们你收到了捐赠，
介绍一下你的工作，
介绍一下你的工作，
请他们你的实验室看一看，
09:07
and invite them to visit your lab,
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你因此得到的满足
09:09
because that visit may be
even more gratifying for you
even more gratifying for you
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可能比他们还多。
09:11
than it is for them.
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09:12
And I'd also like to ask you a favor.
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我还想请你们帮个忙。
如果你成功
安排了这么一次参观，
安排了这么一次参观，
09:14
If you're ever successful
in arranging one of these visits,
in arranging one of these visits,
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09:17
please tell me about it.
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请发邮件告诉我。
09:20
The other part of my family's story
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关于我家故事的结尾就是
09:21
is that we ended up visiting
all four facilities
all four facilities
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我们参观了全部四家接受了
09:24
that received Thomas's donations.
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托马斯器官捐赠的机构。
09:26
And we met amazing people
doing inspiring work.
doing inspiring work.
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我们见到了许多了不起的人，
他们在做了不起的事。
他们在做了不起的事。
09:30
The way I see it now
is that Thomas got into Harvard,
is that Thomas got into Harvard,
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我现在认为托马斯
考入了哈佛大学，
考入了哈佛大学，
09:35
Duke and Penn --
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杜克大学和宾州大学。
09:37
(Laughter)
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（笑声）
09:40
And he has a job at Cytonet,
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他在Cytonet找到了工作，
09:43
and he has colleagues and he has coworkers
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他有很多同事，
09:45
who are in the top of their fields.
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都是本领域的顶尖人才。
09:47
And they need him
in order to do their job.
in order to do their job.
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他们的工作都离不开托马斯。
09:51
And a life that once seemed
brief and insignificant
brief and insignificant
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一个原本看起来短暂
而微不足道的生命
而微不足道的生命
09:55
revealed itself to be vital,
everlasting and relevant.
everlasting and relevant.
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变得重要、永恒和充满意义。
10:02
And I only hope that my life
can be as relevant.
can be as relevant.
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我只希望我的一生也能过得有意义。
10:05
Thank you.
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谢谢大家。
10:06
(Applause)
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（掌声）
ABOUT THE SPEAKER
Sarah Gray - Researchers' dream donatorSarah Gray found meaning in tragic loss by donating the organs of her newborn son to advance scientific research.
Why you should listen
While struggling to cope with the loss of their infant son Thomas, Sarah Gray and her family met the researchers who received his eye, liver and cord blood donations. This journey garnered national and international media attention and brought profound peace to the Gray family.
Gray is the director of marketing and public affairs for the American Association of Tissue Banks and a member of the AATB Donor Family Guidance Document Committee. She is author of a forthcoming memoir from HarperOne, A Life Everlasting: The Extraordinary Story of One Boy's Gift to Medical Science.
Gray holds a BA in Communications from Marquette University and a Masters in Public Communication from American University, where her capstone topic was nondirected kidney donation. She lives in Washington, DC with her husband Ross and children, Callum and Jocelyn.
Sarah Gray | Speaker | TED.com