当我怀上双胞胎3个月后
I was three months pregnant with twins
丈夫罗斯陪我去做 二次超声波检查
when my husband Ross and I went to my second sonogram.
当时我35岁
I was 35 years old at the time,
我知道这意味着
and I knew that that meant we had a higher risk
胎儿有先天缺陷的风险会更大
of having a child with a birth defect.
因此罗斯与我做了一些有关常见的先天缺陷的调查
So, Ross and I researched the standard birth defects,
觉得自己已经准备好了
and we felt reasonably prepared.
但我们万万没有想到
Well, nothing would have prepared us
等待我们的是这样的结果
for the bizarre diagnosis that we were about to face.
医生告诉我们 其中一个孩子托马斯
The doctor explained that one of our twins, Thomas,
患有一种致命的先天无脑畸形
had a fatal birth defect called anencephaly.
他的大脑发育不完整
This means that his brain was not formed correctly
缺少一部分颅骨
because part of his skull was missing.
患有这种疾病的婴儿一般无法出生
Babies with this diagnosis typically die in utero
即使出生也会很快夭折
or within a few minutes, hours or days of being born.
而另一个孩子 Callum
But the other twin, Callum,
根据医生的诊断 看起来很健康
appeared to be healthy, as far as the doctor could tell,
但这两个孩子可是双胞胎啊
and these twins were identical,
他们的基因完全相同
genetically identical.
为什么会这样 我们感到疑惑不解
So after a lot of questions about how this could have possibly happened,
我们讨论了选择性流产的方案
a selective reduction was mentioned,
尽管有可能成功
and while this procedure was not impossible,
但我和健康的那个孩子 要冒很大风险
it posed some unique risks for the healthy twin and for me,
于是我们决定不做流产手术
so we decided to carry the pregnancy to term.
这就是当时我的处境怀孕三个月 还有六个月要等
So there I was, three months pregnant, with two trimesters ahead of me,
我还要想办法 控制自己的血压和心理压力
and I had to find a way to manage my blood pressure and my stress.
那感觉就像有人在你房间 拿着上膛的枪持续六个月指着你
And it felt like having a roommate point a loaded gun at you for six months.
但我盯着枪口看了那么久
But I stared down the barrel of that gun for so long
居然从枪管的尽头看到了一丝曙光
that I saw a light at the end of the tunnel.
既然悲剧已无法避免
While there was nothing we could do to prevent the tragedy,
我想让托马斯短暂的生命
I wanted to find a way for Thomas’s brief life
能产生些积极的影响
to have some kind of positive impact.
于是我询问了护士 关于器官捐赠的事情
So I asked my nurse about organ, eye and tissue donation.
她帮我联系了当地一家器官移植机构
She connected with our local organ-procurement organization,
“华盛顿地区器官移植联合体”
the Washington Regional Transplant Community.
他们跟我解释说
WRTC explained to me
托马斯太小了 他的器官不适合用来移植
that Thomas would probably be too small at birth to donate for transplant,
我非常震惊：
and I was shocked:
我根本没想过捐赠也能被拒绝
I didn’t even know you could be rejected for that.
但他们告诉我 捐赠给研究机构会比较合适
But they said that he would be a good candidate to donate for research.
这让我能以新的眼光看待托马斯
This helped me see Thomas in a new light.
他不仅仅是一名患者
As opposed to just a victim of a disease,
还有可能成为解开医学谜团的关键
I started to see him as a possible key to unlock a medical mystery.
2010年3月23日
On March 23, 2010,
两个孩子顺利出生了
the twins were born, and they were both born alive.
正如医生诊断那样
And just like the doctor said,
托马斯头顶的颅骨缺了一块
Thomas was missing the top part of his skull,
但他照样能喝奶
but he could nurse,
用奶瓶喝
drink from a bottle,
拥抱和抓住我们的手指
cuddle and grab our fingers
像一个正常的婴儿
like a normal baby,
躺在我们怀里睡觉
and he slept in our arms.
6天以后 托马斯在罗斯的怀中离开了我们
After six days, Thomas died in Ross’s arms
我们全家人都陪着他
surrounded by our family.
我们给WRTC打电话 他们派来一辆车
We called WRTC, who sent a van to our home
把托马斯带到国家儿童医学中心
and brought him to Children’s National Medical Center.
几个小时后我们接到电话 事情进展得很顺利
A few hours later, we got a call to say that the recovery was a success,
托马斯的器官被送到了四个不同的机构
and Thomas’s donations would be going to four different places.
他的脐带血被送到了杜克大学
His cord blood would go to Duke University.
他的肝脏被送到了达勒姆 一家细胞治疗公司Cytonet
His liver would go to a cell-therapy company called Cytonet in Durham.
他的角膜被送到了斯格本斯眼科研究院
His corneas would go to Schepens Eye Research Institute,
从属于哈佛医学院
which is part of Harvard Medical School,
他的视网膜被送到了宾夕法尼亚大学
and his retinas would go to the University of Pennsylvania.
几天后 我们举行了一个葬礼 只有直系亲属参加
A few days later, we had a funeral with our immediate family,
包括小卡勒姆
including baby Callum,
这件事也算在我们生活中过去了
and we basically closed this chapter in our lives.
但我总是在想 后来怎么样了？
But I did find myself wondering, what’s happening now?
那些学者们发现什么了吗？
What are the researchers learning?
托马斯的遗体捐赠真的值得吗？
And was it even worthwhile to donate?
WRTC邀请罗斯和我参加了一个互助会
WRTC invited Ross and I to a grief retreat,
还认识了其他15个悲伤的家庭
and we met about 15 other grieving families
他们都将自己亲人的器官捐赠了出去
who had donated their loved one’s organs for transplant.
有些人甚至收到了信
Some of them had even received letters
来自那些接受捐赠的人
from the people who received their loved one’s organs,
向他们表示感谢
saying thank you.
我了解到他们甚至可以见面
I learned that they could even meet each other
只要双方都签了弃权协议
if they’d both sign a waiver,
就像开放式领养一样
almost like an open adoption.
我非常兴奋 我觉得我也可以写信
And I was so excited, I thought maybe I could write a letter
或者研究人员给我写信
or maybe I could get a letter
来让我了解事件的进展
and learn about what happened.
但我失望的发现
But I was disappointed to learn
那种联络机制只适用于器官移植捐献者
that this process only exists for people who donate for transplant.
因此我很嫉妒 我可能是嫉妒器官移植了
So I was jealous. I had transplant envy, I guess.
（笑声）
(Laughter)
但在接下来的几年里
But over the years that followed,
我越来越了解器官捐赠
I learned a lot more about donation,
甚至在这领域找到了一份工作
and I even got a job in the field.
我有了一个念头
And I came up with an idea.
我写了一封邮件 开头是这样的
I wrote a letter that started out,
亲爱的研究员们
“Dear Researcher.”
我介绍了我自己
I explained who I was,
我问他们为什么在2010年3月的时候
and I asked if they could tell me why they requested infant retinas
需要新生儿的视网膜
in March of 2010,
我还请求带家人参观他们的实验室
and I asked if my family could visit their lab.
我把这封邮件发给了 当初安排捐赠的眼睛库
I emailed it to the eye bank that arranged the donation,
“弗吉尼亚眼睛基金会”
the Old Dominion Eye Foundation,
请他们把这封邮件转发给相关人员
and asked if they could send it to the right person.
他们说以前从未做过类似事情
They said that they had never done this before,
不保证能得到回应
and they couldn’t guarantee a response,
但他们会帮我把邮件转发出去
but they wouldn’t be an obstacle, and they would deliver it.
两天后 我收到了回应
Two days later, I got a response
来自宾夕法尼亚大学的阿鲁帕•甘古丽博士
from Dr. Arupa Ganguly of the University of Pennsylvania.
她对我们的捐赠表示感谢
She thanked me for the donation,
她说自己在研究眼癌
and she explained that she is studying retinoblastoma,
那是一种致命的视网膜肿瘤
which is a deadly cancer of the retina
主要影响5岁以下的孩子
that affects children under the age of five,
她同意邀请我们 参观她的实验室
and she said that yes, we were invited to visit her lab.
之后我们通了电话
So next we talked on the phone,
她对我说的第一件事就是
and one of the first things she said to me
她无法想象我们经历了什么
was that she couldn’t possibly imagine how we felt,
托马斯做出了巨大的奉献
and that Thomas had given the ultimate sacrifice,
她觉得自己亏欠我们很多
and that she seemed to feel indebted to us.
我说并不是针对你的研究
So I said, “Nothing against your study,
但真的不是我们自己选的
but we didn’t actually pick it.
我们只是进行了捐赠 是系统选择了你的研究
We donated to the system, and the system chose your study.
我说 而且每天都有许多孩子经历不幸
I said, “And second of all, bad things happen to children every day,
如果你们不用这些视网膜
and if you didn’t want these retinas,
它们也不过是长埋于地下
they would probably be buried in the ground right now.
能够参与你们的研究
So to be able to participate in your study
也算是托马斯生命的另一层意义
gives Thomas’s life a new layer of meaning.
所以千万不要觉得亏欠我们
So, never feel guilty about using this tissue.”
之后她向我解释样本有多么难得
Next, she explained to me how rare it was.
她在6年前就向国家疾病研究交流中心
She had placed a request for this tissue six years earlier
提交了视网膜需求申请
with the National Disease Research Interchange.
而她收到的唯一符合标准的样本
She got only one sample of tissue that fit her criteria,
就来自托马斯
and it was Thomas’s.
随后我们需要确定参观实验室的时间
Next, we arranged a date for me to come visit the lab,
我们选在2015年3月23日 双胞胎5岁生日当天
and we chose March 23, 2015, which was the twins’ fifth birthday.
打完电话 我给她发了托马斯和卡勒姆的照片
After we hung up, I emailed her some pictures of Thomas and Callum,
几周后 我们收到了他们寄来的T恤
and a few weeks later, we received this T-shirt in the mail.
几个月后Ross、Callum和我坐上车
A few months later, Ross, Callum and I piled in the car
前往实验室
and we went for a road trip.
我们见到了阿鲁帕和她的团队
We met Arupa and her staff,
阿鲁帕说 当我告诉她不要觉得亏欠时 她感到了安慰
and Arupa said that when I told her not to feel guilty, that it was a relief,
她以前没以我们的角度思考过
and that she hadn’t seen it from our perspective.
她还告诉我们 托马斯有一个秘密代号
She also explained that Thomas had a secret code name.
就像亨瑞艾塔•拉克丝被称为“海拉”一样
The same way Henrietta Lacks is called HeLa,
托马斯被称作RES 360
Thomas was called RES 360.
RES是指“研究”
RES means research,
360是指 他是整个项目进行10年来
and 360 means he was the 360th specimen
第360个样本
over the course of about 10 years.
她还给我们展示了一份独特的文件
She also shared with us a unique document,
是当年的运输标签
and it was the shipping label
把托马斯的视网膜 从华盛顿运到费城
that sent his retinas from DC to Philadelphia.
这个运输标签现在成了我们的传家宝
This shipping label is like an heirloom to us now.
它的意义就如军功章或者结婚证一般
It’s the same way that a military medal or a wedding certificate might be.
阿鲁帕还告诉我们 她利用托马斯的视网膜和RNA
Arupa also explained that she is using Thomas’s retina and his RNA
试图让形成肿瘤的基因失活
to try to inactivate the gene that causes tumor formation,
她还展示了根据RES 360得到的研究成果
and she even showed us some results that were based on RES 360.
然后她把我们带到冷冻柜前
Then she took us to the freezer
给我们看她依然保存的两个样本
and she showed us the two samples that she still has
上面的标签写着RES 360
that are still labeled RES 360.
那是两份很小的样本
There’s two little ones left.
她说之所以保存它们
She said she saved it
是因为她不知道什么时候能再找到合适的样本
because she doesn’t know when she might get more.
随后我们来到会议室
After this, we went to the conference room
休息了一会 一起吃午饭
and we relaxed and we had lunch together,
实验室工作人员送给 卡勒姆一份生日礼物
and the lab staff presented Callum with a birthday gift.
是一套儿童试验装备
It was a child’s lab kit.
他们还给了他一个实习的机会
And they also offered him an internship.
（笑声）
(Laughter)
今天 我想向你们传达两条要旨 作为总结
So in closing, I have two simple messages today.
一是我们大部分人从未想过 捐赠器官用于研究
One is that most of us probably don’t think about donating to research.
因为我以前就没想过 我也是个普通人
I know I didn’t. I think I’m a normal person.
但我这样做了
But I did it.
这是美好的经历 我在此推荐给各位
It was a good experience, and I recommend it,
它给我们全家带来了平静
and it brought my family a lot of peace.
第二 如果你从事人体器官研究
And second is if you work with human tissue
考虑一下捐赠者和他们的家庭
and you wonder about the donor and about the family,
联系一下他们
write them a letter.
告诉他们你收到了捐赠 介绍一下你的工作
Tell them you received it, tell them what you’re working on,
邀请他们到你的实验室来参观
and invite them to visit your lab,
因此你会得到的满足
because that visit may be even more gratifying for you
可能比他们还多
than it is for them.
我还想请你们帮个忙
And I’d also like to ask you a favor.
如果你成功安排了这类访问
If you’re ever successful in arranging one of these visits,
请发邮件告诉我
please tell me about it.
关于我家故事的结尾就是
The other part of my family’s story
我们参观了全部四家接受了
is that we ended up visiting all four facilities
托马斯器官捐赠的机构
that received Thomas’s donations.
我们见到了许多了不起的人 他们在做了不起的事
And we met amazing people doing inspiring work.
我现在认为托马斯
The way I see it now
考入了哈佛大学
is that Thomas got into Harvard,
杜克大学和宾州大学
Duke and Penn —
（笑声）
(Laughter)
他还在Cytonet找到了工作
And he has a job at Cytonet,
他有很多同事
and he has colleagues and he has coworkers
都是本领域的顶尖人才
who are in the top of their fields.
他们的工作都离不开托马斯
And they need him in order to do their job.
一个原本看起来短暂而微不足道的生命
And a life that once seemed brief and insignificant
变得重要、永恒和充满意义
revealed itself to be vital, everlasting and relevant.
我只希望我的一生也能过得有意义
And I only hope that my life can be as relevant.
谢谢
Thank you.
（掌声）
(Applause)
（掌声）
(Applause)
（掌声）
(Applause)