How my son's short life made a lasting difference | Sarah Gray

翻译人员: Hong Li 校对人员: Gu Yu

I was three months pregnant with twins

当我怀上双胞胎3个月后，

when my husband Ross and I went to my second sonogram.

我和丈夫罗斯一起 去做第二次超声波检查。

I was 35 years old at the time,

当时我35岁，

and I knew that that meant we had a higher risk

我知道这意味着有很大风险

of having a child with a birth defect.

我们的孩子会有先天缺陷。

So, Ross and I researched the standard birth defects,

于是我跟罗斯 了解了一下常见的先天缺陷，

and we felt reasonably prepared.

觉得自己已经准备好了。

Well, nothing would have prepared us

但我们万万没有想到，

for the bizarre diagnosis that we were about to face.

等待我们的是这样的结果。

The doctor explained that one of our twins, Thomas,

医生告诉我们 其中一个孩子托马斯，

had a fatal birth defect called anencephaly.

患有一种致命的先天疾病 叫大脑缺失症。

This means that his brain was not formed correctly

他的大脑发育不完整，

because part of his skull was missing.

缺少一部分颅骨。

Babies with this diagnosis typically die in utero

患有这种疾病的婴儿一般无法出生，

or within a few minutes, hours or days of being born.

即使出生也会很快夭折。

But the other twin, Callum,

而另一个孩子，卡勒姆，

appeared to be healthy, as far as the doctor could tell,

根据医生的诊断，看起来很健康，

and these twins were identical,

但这两个孩子可是双胞胎啊，

genetically identical.

他们的基因完全相同。

So after a lot of questions about how this could have possibly happened,

为什么会这样，我们感到疑惑不解，

a selective reduction was mentioned,

我们讨论了选择性流产的方案，

and while this procedure was not impossible,

尽管有可能成功，

it posed some unique risks for the healthy twin and for me,

但我和健康的那个孩子 要冒很大风险，

so we decided to carry the pregnancy to term.

于是我们决定不做流产手术。

So there I was, three months pregnant, with two trimesters ahead of me,

这就是当时我的处境，怀孕三个月， 还有六个月要等，

and I had to find a way to manage my blood pressure and my stress.

我还要想办法 控制自己的血压和心理压力。

And it felt like having a roommate point a loaded gun at you for six months.

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

But I stared down the barrel of that gun for so long

但我盯着枪口看了那么久

that I saw a light at the end of the tunnel.

居然从枪管的尽头看到了一丝曙光。

While there was nothing we could do to prevent the tragedy,

既然悲剧已无法避免，

I wanted to find a way for Thomas's brief life

我想让托马斯短暂的生命

to have some kind of positive impact.

能产生些积极的影响。

So I asked my nurse about organ, eye and tissue donation.

于是我询问了 护士关于器官捐赠的事情。

She connected with our local organ-procurement organization,

她帮我联系了 当地一家器官移植机构，

the Washington Regional Transplant Community.

“华盛顿地区器官移植联合体”。

WRTC explained to me

他们跟我解释说，

that Thomas would probably be too small at birth to donate for transplant,

托马斯太小了， 他的器官不适合用来移植，

and I was shocked:

我非常震惊：

I didn't even know you could be rejected for that.

我根本没想过捐赠也能被拒绝。

But they said that he would be a good candidate to donate for research.

但他们告诉我，也许 捐赠给研究机构会比较合适。

This helped me see Thomas in a new light.

这让我看到了新的希望。

As opposed to just a victim of a disease,

托马斯不仅仅是一名患者，

I started to see him as a possible key to unlock a medical mystery.

还有可能成为一项医学奇迹的关键。

On March 23, 2010,

2010年3月23日，

the twins were born, and they were both born alive.

两个孩子顺利出生了。

And just like the doctor said,

正如医生诊断那样，

Thomas was missing the top part of his skull,

托马斯头顶的颅骨缺了一块，

but he could nurse,

但他照样能喝奶，

drink from a bottle,

用奶瓶喝，

cuddle and grab our fingers like a normal baby,

能像普通的宝宝一样抓我们的手指，

and he slept in our arms.

躺在我们怀里睡觉。

After six days, Thomas died in Ross's arms

6天以后，托马斯 在罗斯的怀中离开了我们，

surrounded by our family.

我们全家人都陪着他。

We called WRTC, who sent a van to our home

我们给WRTC打电话， 他们派来一辆车，

and brought him to Children's National Medical Center.

把托马斯带到了 国家儿童医学中心。

A few hours later, we got a call to say that the recovery was a success,

几个小时之后，我们接到电话， 事情进展得很顺利，

and Thomas's donations would be going to four different places.

托马斯的器官 被送到了四个不同的机构。

His cord blood would go to Duke University.

他的脐带血被送到了杜克大学。

His liver would go to a cell-therapy company called Cytonet in Durham.

他的肝脏被送到了达勒姆 一家细胞治疗公司，叫Cytonet。

His corneas would go to Schepens Eye Research Institute,

他的角膜被送到了 斯格本斯眼科研究院，

which is part of Harvard Medical School,

从属于哈佛医学院，

and his retinas would go to the University of Pennsylvania.

他的视网膜被送到了 宾夕法尼亚大学。

A few days later, we had a funeral with our immediate family,

几天后，我们举行了一个葬礼， 只有直系亲属参加，

including baby Callum,

包括小卡勒姆，

and we basically closed this chapter in our lives.

我们几乎算是将这一段翻篇儿了。

But I did find myself wondering, what's happening now?

但我老是在想，事情怎么样了？

What are the researchers learning?

那些学者们发现什么了吗？

And was it even worthwhile to donate?

托马斯的遗体捐赠真的值得吗？

WRTC invited Ross and I to a grief retreat,

WRTC邀请罗斯和我 参加了一个互助会，

and we met about 15 other grieving families

见到了其他15个不幸的家庭，

who had donated their loved one's organs for transplant.

他们都将自己亲人 的器官捐赠了出去。

Some of them had even received letters

有些人甚至收到了信，

from the people who received their loved one's organs,

来自那些接受捐赠的人，

saying thank you.

向他们表示感谢。

I learned that they could even meet each other

我了解到他们甚至可以见面

只要双方都签一份弃权声明，

if they'd both sign a waiver,

almost like an open adoption.

就像开放式领养一样。

And I was so excited, I thought maybe I could write a letter

我非常兴奋，我觉得我也可以写信

or I could get a letter and learn about what happened.

或者让他们给我写， 来了解事情的进展。

但后来我很失望，因为我了解到

But I was disappointed to learn

that this process only exists for people who donate for transplant.

只有那些捐赠器官 用于移植手术的人才能这么做。

So I was jealous. I had transplant envy, I guess.

我很嫉妒。嫉妒那些器官移植的人。

(Laughter)

（笑声）

But over the years that followed,

但在接下来的几年里，

I learned a lot more about donation,

我越来越了解器官捐赠，

and I even got a job in the field.

甚至在这领域找到了一份工作。

And I came up with an idea.

我有了一个念头。

I wrote a letter that started out,

我写了一封邮件，开头是这样的，

"Dear Researcher."

“亲爱的研究者，”

I explained who I was,

我介绍了我自己，

and I asked if they could tell me why they requested infant retinas

问他们可不可以告诉我， 为什么在2010年3月的时候，

in March of 2010,

需要新生儿的视网膜，

and I asked if my family could visit their lab.

我还请求带家人参观他们的实验室。

I emailed it to the eye bank that arranged the donation,

我把这封邮件发给了 当初安排捐赠的眼睛库，

the Old Dominion Eye Foundation,

“弗吉尼亚眼睛基金会”，

and asked if they could send it to the right person.

请他们把这封邮件转发给相关人员。

They said that they had never done this before,

他们说以前从未做过类似事情，

and they couldn't guarantee a response,

不保证能得到回应，

but they wouldn't be an obstacle, and they would deliver it.

但他们会帮我把邮件转发出去。

Two days later, I got a response

两天后，我收到了回应，

from Dr. Arupa Ganguly of the University of Pennsylvania.

来自宾夕法尼亚大学 的阿鲁帕•甘古丽博士。

She thanked me for the donation,

她对我们的捐赠表示感谢，

and she explained that she is studying retinoblastoma,

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，

which is a deadly cancer of the retina

that affects children under the age of five,

主要影响5岁以下的孩子，

and she said that yes, we were invited to visit her lab.

而且她同意邀请 我们参观她的实验室。

So next we talked on the phone,

之后我们通了电话，

and one of the first things she said to me

她对我说的第一件事就是

was that she couldn't possibly imagine how we felt,

她无法想象我们经历了什么，

and that Thomas had given the ultimate sacrifice,

托马斯做出了巨大的牺牲，

and that she seemed to feel indebted to us.

她觉得自己亏欠我们很多。

So I said, "Nothing against your study,

我说，“并不是针对你的研究，

but we didn't actually pick it.

但真的不是我们自己选的。

We donated to the system, and the system chose your study.

我们只是进行了捐赠， 是系统选择了你的研究。”

I said, "And second of all, bad things happen to children every day,

我说，“而且， 每天都有许多孩子经历不幸，

and if you didn't want these retinas,

如果你们不用这些视网膜，

they would probably be buried in the ground right now.

它们也不过是长埋于地下。

So to be able to participate in your study

因此，能够参与你们的研究，

gives Thomas's life a new layer of meaning.

也算是托马斯生命的另一层意义。

So, never feel guilty about using this tissue."

所以，千万不要觉得亏欠我们。”

Next, she explained to me how rare it was.

之后，她向我解释一切发生得太巧。

She had placed a request for this tissue six years earlier

她在6年前就向 “国家疾病研究交流中心”

with the National Disease Research Interchange.

提交了视网膜需求申请。

She got only one sample of tissue that fit her criteria,

而她收到的唯一符合标准的样本，

and it was Thomas's.

就来自托马斯。

Next, we arranged a date for me to come visit the lab,

随后，我们需要确定 参观实验室的时间，

and we chose March 23, 2015, which was the twins' fifth birthday.

我们选择了2015年3月23日， 就在双胞胎5岁生日当天。

After we hung up, I emailed her some pictures of Thomas and Callum,

打完电话，我给她发了 托马斯和卡勒姆的照片，

and a few weeks later, we received this T-shirt in the mail.

几周后， 我们收到了他们寄来的T恤。

A few months later, Ross, Callum and I piled in the car

几个月后，罗斯、 卡勒姆和我收拾行装，

and we went for a road trip.

开车上路。

We met Arupa and her staff,

我们见到了阿鲁帕和她的团队，

and Arupa said that when I told her not to feel guilty, that it was a relief,

阿鲁帕说，当我告诉她 不要觉得亏欠时她真的松了一口气，

and that she hadn't seen it from our perspective.

她以前从来没有 像我们一样来看这件事。

She also explained that Thomas had a secret code name.

她还告诉我们 托马斯有一个秘密代号。

The same way Henrietta Lacks is called HeLa,

就像亨瑞艾塔•拉克丝 被称为“海拉”一样，

Thomas was called RES 360.

托马斯被称作RES 360。

RES means research,

RES是指“研究”，

and 360 means he was the 360th specimen

360是指他是 整个项目进行10年来

over the course of about 10 years.

第360个样本。

She also shared with us a unique document,

她还给我们展示了一份独特的文件，

and it was the shipping label

是当年的运输标签，

that sent his retinas from DC to Philadelphia.

把托马斯的视网膜 从华盛顿运到费城。

This shipping label is like an heirloom to us now.

这个运输标签现在 成了我们的传家宝。

It's the same way that a military medal or a wedding certificate might be.

它的意义就如 军功章或者结婚证一般。

Arupa also explained that she is using Thomas's retina and his RNA

阿鲁帕还告诉我们，她利用 托马斯的视网膜和RNA

to try to inactivate the gene that causes tumor formation,

试图让形成肿瘤的基因失活，

and she even showed us some results that were based on RES 360.

她还展示了根据RES 360 得到的一些研究成果。

Then she took us to the freezer

然后她把我们带到冷冻柜前，

and she showed us the two samples that she still has

给我们看她依然保存的两个样本，

that are still labeled RES 360.

上面的标签写着RES 360。

There's two little ones left.

那是两份很小的样本。

She said she saved it

她说之所以保存它们

because she doesn't know when she might get more.

是因为她不知道什么时候 能再找到合适的样本。

After this, we went to the conference room

随后我们来到会议室，

and we relaxed and we had lunch together,

休息了一会，一起吃午饭，

and the lab staff presented Callum with a birthday gift.

实验室工作人员 送给卡勒姆一份生日礼物。

It was a child's lab kit.

是一套儿童试验装备。

And they also offered him an internship.

他们还给了他一个实习的机会。

(Laughter)

（笑声）

So in closing, I have two simple messages today.

最后，我想传递两个简单的信息。

One is that most of us probably don't think about donating to research.

第一，我们大部分人可能从未想过 捐赠器官用于研究。

I know I didn't. I think I'm a normal person.

因为我以前就没想过， 我也是个普通人。

But I did it.

但我这样做了。

It was a good experience, and I recommend it,

这是一次不错的经历 我建议你们也试试，

and it brought my family a lot of peace.

它给我的家庭带来了平静。

And second is if you work with human tissue

第二，如果你从事人体器官研究，

and you wonder about the donor and about the family,

考虑一下捐赠者和他们的家庭，

write them a letter.

联系一下他们。

Tell them you received it, tell them what you're working on,

告诉他们你收到了捐赠， 介绍一下你的工作，

请他们你的实验室看一看，

and invite them to visit your lab,

你因此得到的满足

because that visit may be even more gratifying for you

than it is for them.

可能比他们还多。

And I'd also like to ask you a favor.

我还想请你们帮个忙。

If you're ever successful in arranging one of these visits,

如果你成功 安排了这么一次参观，

please tell me about it.

请发邮件告诉我。

The other part of my family's story

关于我家故事的结尾就是

is that we ended up visiting all four facilities

我们参观了全部四家接受了

that received Thomas's donations.

托马斯器官捐赠的机构。

And we met amazing people doing inspiring work.

我们见到了许多了不起的人， 他们在做了不起的事。

The way I see it now is that Thomas got into Harvard,

我现在认为托马斯 考入了哈佛大学，

Duke and Penn --

杜克大学和宾州大学。

(Laughter)

（笑声）

And he has a job at Cytonet,

他在Cytonet找到了工作，

and he has colleagues and he has coworkers

他有很多同事，

who are in the top of their fields.

都是本领域的顶尖人才。

And they need him in order to do their job.

他们的工作都离不开托马斯。

And a life that once seemed brief and insignificant

一个原本看起来短暂 而微不足道的生命

revealed itself to be vital, everlasting and relevant.

变得重要、永恒和充满意义。

And I only hope that my life can be as relevant.

我只希望我的一生也能过得有意义。

Thank you.

谢谢大家。

(Applause)

（掌声）