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

譯者: Jin Wu 審譯者: Howard Chuang

I was three months pregnant with twins

我剛懷雙胞胎三個月，

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

我丈夫羅斯陪我照第二次超音波。

I was 35 years old at the time,

當時我三十五歲。

and I knew that that meant we had a higher risk

這意味著我們的孩子

of having a child with a birth defect.

患有先天缺陷的風險非常高。

So, Ross and I researched the standard birth defects,

羅斯跟我便研究常態的先天缺陷，

and we felt reasonably prepared.

我們也覺得可以應付。

Well, nothing would have prepared us

但我們根本沒料到，

for the bizarre diagnosis that we were about to face.

會有不尋常的診斷。

The doctor explained that one of our twins, Thomas,

醫生告訴我們其中 一個胎兒，也就是湯瑪斯，

had a fatal birth defect called anencephaly.

得了致命的先天缺陷──無腦畸型。

This means that his brain was not formed correctly

就是他的腦袋發育不正常。

because part of his skull was missing.

因為他部分頭骨沒有成形。

Babies with this diagnosis typically die in utero

這類嬰兒通常會在死在子宮裡，

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

或在出生後數分鐘至數日內死亡。

But the other twin, Callum,

但是另一孩子，也就是卡勒，

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

根據醫生所判，似乎是健康的。

and these twins were identical,

兩人是同卵雙胞胎。

genetically identical.

基因組合相同。

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

關於為何如此， 我們也問過醫生一堆問題，

a selective reduction was mentioned,

醫生提出減胎的建議。

and while this procedure was not impossible,

這個辦法或許行得通，

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

但可能會為我和另一個 健康的胎兒帶來風險，

so we decided to carry the pregnancy to term.

於是我們決定讓他足月出生。

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

那時我懷孕三個月， 還要等待 6 個月，

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

而且要妥善控制自己的血壓和情緒。

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

感覺有如一個室友在那六個月裡 用上膛的槍指著我。

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

而我瞪著那個槍口良久，

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

直到我從黑暗中看到一線曙光。

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

雖然我們不能避免悲劇，

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

但我為湯瑪斯短暫的一生，

to have some kind of positive impact.

找到了些許積極的影響。

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

於是我問護士有關捐贈器官等事情。

She connected with our local organ-procurement organization,

她聯絡了本地的器官捐贈組織，

the Washington Regional Transplant Community.

華盛頓地區移植協會（WRTC）。

WRTC explained to me

這所協會向我解釋

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

湯瑪斯出生時可能太小， 難以把他的器官移植到其他人。

and I was shocked:

我很震驚：

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

我不知道竟然連你們 也會拒絕接受捐贈。

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

但他們說他很適合捐贈做硏究。

This helped me see Thomas in a new light.

這樣令我對湯瑪斯有了新看法，

As opposed to just a victim of a disease,

與其只是做一個疾病的受害者，

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

我倒發覺他會是打開 醫學謎團的鎖匙。

On March 23, 2010,

2012 年 3 月 23 日，

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

雙胞胎出生了，兩人都活下來，

And just like the doctor said,

正如醫生說過，

Thomas was missing the top part of his skull,

湯瑪斯失去了頭骨的頂部，

but he could nurse,

但他可以喝奶，

drink from a bottle,

喝奶瓶裡的奶。

cuddle and grab our fingers like a normal baby,

像正常的嬰兒般依偎和 抓緊我們的手指。

and he slept in our arms.

還躺在我們的臂彎睡覺。

After six days, Thomas died in Ross's arms

六天後，湯瑪斯躺在羅斯懷裡逝世，

surrounded by our family.

全家人都陪伴著他。

We called WRTC, who sent a van to our home

我們通知 WRTC 後，他們派車

and brought him to Children's National Medical Center.

把他送到國家兒童醫療中心。

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

數小時後，我們收到器官 摘除成功的通知，

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

捐贈的器官將會送到 4 處不同的地方。

His cord blood would go to Duke University.

他的臍帶血送到社克大學。

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

肝臟送到位於德罕城的 一所叫 Cytonet 細胞治療公司。

His corneas would go to Schepens Eye Research Institute,

眼角膜送到 Schepens 眼科硏究院，

which is part of Harvard Medical School,

它隸屬於哈佛大學醫學院，

and his retinas would go to the University of Pennsylvania.

而視網膜被送到賓卅大學。

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

數日後，我們舉行了喪禮，

including baby Callum,

當日嬰兒卡勒也有出席，

and we basically closed this chapter in our lives.

大致上我們人生的這一節 已告一段落。

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

但我感到納悶現在發生什麼事？

What are the researchers learning?

硏究學者正在硏習什麼？

And was it even worthwhile to donate?

是否值得捐贈？

WRTC invited Ross and I to a grief retreat,

WRTC 邀請我和羅斯參加哀傷靜修。

and we met about 15 other grieving families

我們見了 15 個喪親家庭，

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

他們把心愛親人的器官捐贈出來。

Some of them had even received letters

有些家庭甚至收到

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

來自那些器官捐贈獲得者的感謝信。

saying thank you.

I learned that they could even meet each other

我聽說雙方甚至為了見面

if they'd both sign a waiver,

要簽署棄權聲明，

almost like an open adoption.

就好像是公開領養一樣。

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

我非常興奮，心想或許可以寫一封信

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

或者收到一封信，知道後來怎樣。

But I was disappointed to learn

但是我非常失望，因為得知這些過程

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

只有捐贈器官移植的家庭才會經歷。

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

我猜想自己可能忌妒別人移植器官。

(Laughter)

（笑聲）

But over the years that followed,

但是接下來的幾年，

I learned a lot more about donation,

我對器官捐贈認識了不少，

and I even got a job in the field.

甚至在這個領域找到工作。

And I came up with an idea.

跟著我有一個想法。

I wrote a letter that started out,

我寫了一封信，開始是這樣說：

"Dear Researcher."

「親愛的硏究學者。」

I explained who I was,

我先解釋自己是誰，

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

然後問他們可否告訴我

為什麼在 2010 年 3 月 需要嬰兒的視網膜，

in March of 2010,

and I asked if my family could visit their lab.

還問他們讓我們參觀那𥚃的實驗室。

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

我電郵到負責安排捐贈事宜的眼庫

the Old Dominion Eye Foundation,

「老自治領州眼睛基金會」，

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

我問他們可否轉寄給我要找的人。

They said that they had never done this before,

他們說以往從未做過這樣的事情，

and they couldn't guarantee a response,

而且不能擔保有回應，

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

但他們不會作難， 他們一定幫忙轉寄。

Two days later, I got a response

兩日後，我收到答覆，

from Dr. Arupa Ganguly of the University of Pennsylvania.

那是來自賓州大學的艾魯芭博士。

She thanked me for the donation,

她感謝我的捐贈，

and she explained that she is studying retinoblastoma,

還説她正在硏究視網膜細胞瘤，

which is a deadly cancer of the retina

那是一種致命的視網膜癌症，

that affects children under the age of five,

影響五歲以下的小童，

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

她邀請我們到訪她的實驗室。

So next we talked on the phone,

其後我們電話交談，

and one of the first things she said to me

其中有一件事她最想對我說，

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

就是她無法想像我們的感受，

and that Thomas had given the ultimate sacrifice,

湯瑪斯終極的奉獻

and that she seemed to feel indebted to us.

令她感到好像虧欠了我們。

So I said, "Nothing against your study,

於是我說：「我不是反對妳的硏究，

but we didn't actually pick it.

我們其實無從選擇，

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

我們捐贈到體制內， 它選擇了你的研究。

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

其次是每天都有兒童 發生不幸的事情，

and if you didn't want these retinas,

如果妳不要這些視網膜，

they would probably be buried in the ground right now.

它們很可能已經長埋地下。

So to be able to participate in your study

所以能夠為妳的硏究出一分力，

gives Thomas's life a new layer of meaning.

將會為湯瑪斯的生命添上新意義。

So, never feel guilty about using this tissue."

請不要因為採用這些組織而內疚。」

Next, she explained to me how rare it was.

跟著她向我解釋那些組織非常罕有，

She had placed a request for this tissue six years earlier

她早在 6 年前已向 國家疾病交流硏究院

with the National Disease Research Interchange.

要求採用這些組織。

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

最後只得一個組織樣本 符合她的要求，

and it was Thomas's.

那就是湯瑪斯的組織。

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

其後我們安排了日子到訪實驗室，

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

選擇了 2015 年 3 月 23 日， 那天是雙胞胎的 5 歲生日。

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

掛斷電話後，我電郵了幾張 雙胞胎照片給她，

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

數星期後，我收到這件 郵寄送來的 T 恤。

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

再過幾個月後，羅斯、卡勒和我

and we went for a road trip.

一起擠進車子踏上旅程。

We met Arupa and her staff,

我們跟艾魯芭和她的職員見面，

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

艾魯芭說當我叫她不要內疚時， 她不禁舒了一口氣，

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

還提到她沒有從我們的角度看事情。

She also explained that Thomas had a secret code name.

她告訴我們湯瑪斯有一個密碼名字，

The same way Henrietta Lacks is called HeLa,

就像海莉耶塔·拉克斯叫海拉一樣，

Thomas was called RES 360.

湯瑪斯叫做 RES 360。

RES means research,

RES 的意思是硏究，

and 360 means he was the 360th specimen

360 代表研究的十年過程中， 他是第 360 個標本。

over the course of about 10 years.

She also shared with us a unique document,

她還讓我們看一份不尋常的文件。

and it was the shipping label

那是一張送貨單，

that sent his retinas from DC to Philadelphia.

表示湯瑪斯的視網膜 從華盛頓送到費城。

This shipping label is like an heirloom to us now.

現在這張單子彷彿成為 我們的傳家寶，

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

等同軍事獎章或結婚證書。

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

艾魯芭還說她正在利用 湯瑪斯的視網膜和 RNA，

to try to inactivate the gene that causes tumor formation,

試圖阻止那些形成腫瘤的基因活動。

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

她甚至給我們看根據 RES 360 硏究得到的結果。

Then she took us to the freezer

跟著她帶我們往冷涷櫃，

and she showed us the two samples that she still has

然後展示兩個她一直保存的樣本，

that are still labeled RES 360.

仍舊標示 RES 360。

There's two little ones left.

那裡剩下兩個小小的樣本。

She said she saved it

她說她保存下來，

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

因為她不知道何時 才會收到更多樣本。

After this, we went to the conference room

其後我們到了會議室，

and we relaxed and we had lunch together,

大家休息一會，然後吃午飯，

and the lab staff presented Callum with a birthday gift.

接著職員送給卡勒一份生日禮物。

It was a child's lab kit.

那是一份兒童實驗室工具包，

And they also offered him an internship.

還聘請他做實習生。

(Laughter)

（笑聲）

So in closing, I have two simple messages today.

最後我今天帶來兩個簡單的信息，

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

一是大多數人不會想到 捐贈器官作硏究。

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

我知道我以前一定不會， 因為我認為自己是個普通人。

But I did it.

但我捐贈了。

It was a good experience, and I recommend it,

那是一次很好的經歷，我樂意推薦，

and it brought my family a lot of peace.

它讓我們一家人心情得以平伏。

And second is if you work with human tissue

二是如果你從事人體組織的研究，

and you wonder about the donor and about the family,

想到捐贈者和他的家人，

write them a letter.

寫一封信給他們。

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

告訴他們你收到了， 正在做什麼工作，

and invite them to visit your lab,

邀請他們來探訪你的實驗室，

because that visit may be even more gratifying for you

因為那次探訪可能令你

than it is for them.

比他們還要高興。

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

我也想請求你們幫個忙。

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

如果你們成功地 做了一次這樣的探訪，

please tell me about it.

請告訴我。

The other part of my family's story

我們家庭其餘的經歷，

is that we ended up visiting all four facilities

就是我們探訪了那些接受

that received Thomas's donations.

湯瑪斯所有捐贈的四間機構。

And we met amazing people doing inspiring work.

碰到出色的人材， 做令人鼓舞的工作。

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

我覺得好像是湯瑪斯進了哈佛大學、

Duke and Penn --

社克大學和賓州大學。

(Laughter)

（笑聲）

And he has a job at Cytonet,

而且他在 Cytonet 還有份工作。

and he has colleagues and he has coworkers

他有同事和幫手，

who are in the top of their fields.

他們都是那行業的頂尖人物，

And they need him in order to do their job.

需要湯瑪斯才能完成他們的工作。

And a life that once seemed brief and insignificant

一個曾經似乎是短暫 而微不足道的生命，

revealed itself to be vital, everlasting and relevant.

現在變得那麼重要、 永恆和意義重大。

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

我只希望我的生命變得有意義。

Thank you.

謝謝。

(Applause)

（掌聲）