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

我剛懷雙胞胎三個月，

I was 35 years old at the time,

我丈夫羅斯陪我照第二次超音波時。

and I knew that that meant we had a higher risk

當時我三十五歲。

of having a child with a birth defect.

這意味著我們的孩子

So, Ross and I researched the standard birth defects,

患有先天缺陷的風險非常高

and we felt reasonably prepared.

魯斯跟我便研究常態的先天缺陷

Well, nothing would have prepared us

我們也覺得可以應付。

for the bizarre diagnosis that we were about to face.

但我們根本沒料到，

The doctor explained that one of our twins, Thomas,

會有不尋常的診斷。

had a fatal birth defect called anencephaly.

醫生告訴我們其中一個 胎兒，也就是湯瑪斯，

This means that his brain was not formed correctly

得了致命的先天缺陷-無腦畸型。

because part of his skull was missing.

就是他的腦袋發育不正常。

Babies with this diagnosis typically die in utero

因為他部分頭骨沒有成形。

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

這類嬰兒通常會在死在子宮裡

But the other twin, Callum,

或在出生後數分鐘至數日內死亡

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

但是另一孩子，也就是卡勒，

and these twins were identical,

根據醫生所判，似乎是健康的。

genetically identical.

兩人是同卵雙胞胎。

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

基因組合相同。

a selective reduction was mentioned,

關於為何如此，我們也問過醫生一堆問題，

and while this procedure was not impossible,

醫生提出減胎的建議。

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

這個辦法或許行得通，

so we decided to carry the pregnancy to term.

但可能會為我和另一個 健康的胎兒帶來風險

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

於是我們決定讓他足月出生

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

那時我懷孕三個月， 還要等待6個月

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

而且要妥善控制自己的 血壓和情緒

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

感覺有如一個室友在那六個月裡 用上膛的槍指著我

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

而我瞪著那個槍口良久

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

直到我從黑暗中看到一線曙光

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

雖然我們不能避免悲劇

to have some kind of positive impact.

但我為湯瑪斯短暫的一生

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

找到了些許積極的影響。

She connected with our local organ-procurement organization,

於是我問護士有關捐贈器官等事情

the Washington Regional Transplant Community.

她聯絡了本地的器官捐贈組織

WRTC explained to me

華盛頓地區移植協會（WRTC）

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

這所協會向我解釋

and I was shocked:

湯瑪斯出生時可能太小， 難以把他的器官移植到其他人

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

我很震驚：

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

我不知道竟然連你們 也會拒絕接受捐贈。

This helped me see Thomas in a new light.

但他們說他很適合捐贈做硏究。

As opposed to just a victim of a disease,

這樣令我對湯瑪斯有了新看法

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

與其只是做一個疾病的受害者，

On March 23, 2010,

我倒發覺他會是打開 醫學謎團的鎖匙。

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

2012年3月23日，

And just like the doctor said,

孖胎兒出生了，兩人都活下來

Thomas was missing the top part of his skull,

正如醫生說過

but he could nurse,

湯瑪斯失去了頭骨的頂部

drink from a bottle,

但他可以吃

cuddle and grab our fingers like a normal baby,

奶瓶裡的奶

and he slept in our arms.

像正常的嬰兒般依偎和 抓緊我們的手指

After six days, Thomas died in Ross's arms

還躺在我們的臂彎睡覺。

surrounded by our family.

六天後，湯瑪斯躺在魯斯懷裡逝世

We called WRTC, who sent a van to our home

全家人都陪伴著他。

and brought him to Children's National Medical Center.

我們通知 WRTC 後，他們派車

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

把他送到國家兒童醫療中心

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

數小時後，我們收到器官 恢復成功的通知

His cord blood would go to Duke University.

捐贈的器官將會送到4處不同的地方

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

他的臍帶血送到社克大學

His corneas would go to Schepens Eye Research Institute,

肝臟送到位於德罕城的 一所叫Cytonet 細胞治療公司。

which is part of Harvard Medical School,

眼角膜送到Schepens眼科硏究院，

and his retinas would go to the University of Pennsylvania.

它隸屬於哈佛大學醫學院，

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

而視網膜被送到賓卅大學。

including baby Callum,

數日後，我們舉行了喪禮

and we basically closed this chapter in our lives.

當日嬰兒卡姆勒也有出席

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

大致上我們人生的這一節 已告一段落

What are the researchers learning?

但我感到納悶現在發生什麼事？

And was it even worthwhile to donate?

硏究學者正在硏習什麼？

WRTC invited Ross and I to a grief retreat,

是否值得捐贈？

and we met about 15 other grieving families

WRTC 邀請我和魯斯參加哀傷靜修。

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

我們見了15個喪親家庭

Some of them had even received letters

他們把心愛親人的器官捐贈出來

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

有些家庭甚至收到

saying thank you.

來自那些器官捐贈獲得者的

I learned that they could even meet each other

感謝信。

if they'd both sign a waiver,

我聽說雙方甚至為了見面

almost like an open adoption.

要簽署棄權聲明，

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

就好像是公開領養一樣。

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

我非常興奮，心想或許可以寫一封信

But I was disappointed to learn

或者收到一封信，知道後來怎樣

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

但是我非常失望，因為得知這些過程

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

只有捐贈器官移植的家庭才會經歷

(Laughter)

我猜想自己可能炉忌別人移植器官。

But over the years that followed,

（笑聲）

I learned a lot more about donation,

但是接下來的幾年

and I even got a job in the field.

我對器官捐贈認識了不少

And I came up with an idea.

甚至這個領域找到工作。

I wrote a letter that started out,

跟著我有一個想法

"Dear Researcher."

我寫了一封信，開始是這樣說：

I explained who I was,

「親愛的硏究學者。」

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

我先解釋自己是誰

in March of 2010,

然後問他們可否告訴我為什麼在

and I asked if my family could visit their lab.

2010年3月需要嬰兒的視網膜

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

還問他們讓我們參觀那

the Old Dominion Eye Foundation,

我電郵到眼庫的舊眼科統籌基金

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

他們負責安排捐贈事宜

They said that they had never done this before,

我問他們可否分配給合適的人選

and they couldn't guarantee a response,

他們說以往從未做過這樣的事情

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

而且不能擔保有回應。

Two days later, I got a response

這樣難不倒我，他們一定回覆。

from Dr. Arupa Ganguly of the University of Pennsylvania.

兩日後，我收到答覆

She thanked me for the donation,

那是來自賓州大學的 Arupa Ganguly博士

and she explained that she is studying retinoblastoma,

她感謝我的捐贈

which is a deadly cancer of the retina

還説她正在硏究視網膜細胞瘤

that affects children under the age of five,

那是一種致命的視網膜癌症

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

影響五歲以下的小童

So next we talked on the phone,

她邀請我們到訪她的實驗室

and one of the first things she said to me

其後我們電話交談

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

其中有一件事她最想對我說

and that Thomas had given the ultimate sacrifice,

就是她無法想像我們的感受

and that she seemed to feel indebted to us.

湯瑪斯終極的奉獻

So I said, "Nothing against your study,

令她感到好像虧欠了我們

but we didn't actually pick it.

於是我說：「我不是反對妳的硏究

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

我們其實無從選擇

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

我們捐贈到體制， 它選擇了你的研究。

and if you didn't want these retinas,

其次是每天都有兒童發生不幸的事情

they would probably be buried in the ground right now.

如果你不要這些視網膜

So to be able to participate in your study

它們很可能已經長埋地下

gives Thomas's life a new layer of meaning.

所以能夠為妳的硏究出一分力

So, never feel guilty about using this tissue."

將會為湯瑪斯的生命添上新意義。

Next, she explained to me how rare it was.

請不要因為採用 這些組織而內疚。」

She had placed a request for this tissue six years earlier

跟著她向我解釋 那些組織非常罕有

with the National Disease Research Interchange.

她早在6年前已向 國家疾病交流硏究院

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

要求採用這些組織

and it was Thomas's.

最後只得一個組織樣本 符合她的要求

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

那就是湯瑪斯的組織

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

其後我們安排了日子到訪實驗室

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

選擇了2015年3月23日， 那天是雙胞胎的5歲生日。

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

掛線後，我電郵了幾張 雙胞胎照片給她

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

數星期後，我收到這件 郵寄送來的T恤

and we went for a road trip.

再過幾個月後，魯斯、卡勒姆和我

We met Arupa and her staff,

一起擠進車子踏上旅程。

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

我們跟Arupa和她的職員見面

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

Arupa 說當我叫她不要內疚時， 她不禁舒了一口氣

She also explained that Thomas had a secret code name.

還提到她沒有顧及我們的想法

The same way Henrietta Lacks is called HeLa,

她告訴我們湯瑪斯有一個密碼名字

Thomas was called RES 360.

就像海莉耶塔.拉克斯叫海拉一樣

RES means research,

湯瑪斯叫做 RES 360

and 360 means he was the 360th specimen

RES 的意思是硏究

over the course of about 10 years.

360 代表研究的十年過程中

She also shared with us a unique document,

他是第360個標本

and it was the shipping label

她還讓我們看一份不尋常的文件。

that sent his retinas from DC to Philadelphia.

那是一張船運標記

This shipping label is like an heirloom to us now.

表示湯瑪斯的視網膜 從華盛頓送到費城

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

現在這個標記仿彿 成為我們的傳家寶

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

等同軍事獎章或結婚證書

to try to inactivate the gene that causes tumor formation,

Arupa還說她正在利用 湯瑪斯的視網膜和RNA

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

試圖阻止那些形成腫瘤的基因活動

Then she took us to the freezer

她甚至給我們看根據 RES 360 硏究得到的結果

and she showed us the two samples that she still has

跟著她帶我們往冷涷櫃

that are still labeled RES 360.

然後展示兩個她一直保存的樣本

There's two little ones left.

仍舊標示 RES 360

She said she saved it

那裡剩下兩個小小的樣本

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

她說她保存下來

After this, we went to the conference room

因為她還未知道何時 或會有更多收穫。

and we relaxed and we had lunch together,

其後我們到了會議室

and the lab staff presented Callum with a birthday gift.

大家休息一會，然後吃午飯

It was a child's lab kit.

接著職員送給卡姆勒一份生日禮物。

And they also offered him an internship.

那是一份兒童實驗室工具包

(Laughter)

還聘請他做實習生。

So in closing, I have two simple messages today.

（笑聲）

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

最後我今天帶來兩個簡單的信息

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

一是大多數人不會想到 捐贈器官作硏究

But I did it.

我知道我以前一定不會 因為我認為自己是個普通人

It was a good experience, and I recommend it,

但我已經捐贈出來了。

and it brought my family a lot of peace.

那是一次很好的經歷，我樂意推薦

And second is if you work with human tissue

它讓我們一家人心情得以平伏。

and you wonder about the donor and about the family,

二是如果你從事人體組織的研究

write them a letter.

想到捐贈者和他（她）的家人

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

寫一封信給他們

and invite them to visit your lab,

告訴他們你收到了和正在做什麼工作

because that visit may be even more gratifying for you

邀請他們來探訪你的實驗室

than it is for them.

因為那次探訪可能令你

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

比他們還要高興。

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

我也想請求你們幫個忙

please tell me about it.

如果你們曾成功地做了 一次這樣的探訪

The other part of my family's story

請告訴我

is that we ended up visiting all four facilities

我們家庭其餘的經歷

that received Thomas's donations.

就是我們探訪了那些接受

And we met amazing people doing inspiring work.

湯瑪斯捐贈的所有四間機構

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

碰到出色的人材， 做令人鼓舞的工作。

Duke and Penn --

我覺得好像是湯瑪斯 進了哈佛大學

(Laughter)

社克大家和賓州大學

And he has a job at Cytonet,

（笑聲）

and he has colleagues and he has coworkers

而且他在 Cytonet 還有份工作

who are in the top of their fields.

他有同事和幫手

And they need him in order to do their job.

他們都是那行業的頂尖人物

And a life that once seemed brief and insignificant

需要湯瑪斯才能完成他們的工作

revealed itself to be vital, everlasting and relevant.

一個曾經似乎是短暫 而微不足道的生命

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

現在變得那麼重要、 永恆和意義重大

Thank you.

我只希望我的生命變得有意義。

(Applause)

謝謝。