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  • I was three months pregnant with twins

    譯者: Jin Wu 審譯者: Howard Chuang

  • 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。

I was three months pregnant with twins

譯者: Jin Wu 審譯者: Howard Chuang

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B1 中級 中文 美國腔 TED 湯瑪斯 捐贈 視網膜 雙胞胎 收到

【TED】莎拉-格雷:我兒子短暫的生命如何產生了持久的差異(我兒子短暫的生命如何產生了持久的差異|莎拉-格雷)。 (【TED】Sarah Gray: How my son's short life made a lasting difference (How my son's short life made a lasting difference | Sarah Gray))

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