I was three months pregnant with twins when my husband Ross and I went to my second sonogram.
我剛懷雙胞胎三個月, 我丈夫羅斯陪我照第二次超音波。
I was 35 years old at the time, and I knew that that meant we had a higher risk of having a child with a birth defect. So, Ross and I researched the standard birth defects, and we felt reasonably prepared.
當時我三十五歲。 這意味著我們的孩子 患有先天缺陷的風險非常高。 羅斯跟我便研究常態的先天缺陷, 我們也覺得可以應付。
Well, nothing would have prepared us for the bizarre diagnosis that we were about to face. The doctor explained that one of our twins, Thomas, had a fatal birth defect called anencephaly. This means that his brain was not formed correctly because part of his skull was missing. Babies with this diagnosis typically die in utero or within a few minutes, hours or days of being born. But the other twin, Callum, appeared to be healthy, as far as the doctor could tell, and these twins were identical, genetically identical.
但我們根本沒料到, 會有不尋常的診斷。 醫生告訴我們其中 一個胎兒,也就是湯瑪斯, 得了致命的先天缺陷──無腦畸型。 就是他的腦袋發育不正常。 因為他部分頭骨沒有成形。 這類嬰兒通常會在死在子宮裡, 或在出生後數分鐘至數日內死亡。 但是另一孩子,也就是卡勒, 根據醫生所判,似乎是健康的。 兩人是同卵雙胞胎。 基因組合相同。
So after a lot of questions about how this could have possibly happened, a selective reduction was mentioned, and while this procedure was not impossible, it posed some unique risks for the healthy twin and for me, so we decided to carry the pregnancy to term. So there I was, three months pregnant, with two trimesters ahead of me, and I had to find a way to manage my blood pressure and my stress. And it felt like having a roommate point a loaded gun at you for six months. But I stared down the barrel of that gun for so long that I saw a light at the end of the tunnel. While there was nothing we could do to prevent the tragedy, I wanted to find a way for Thomas's brief life to have some kind of positive impact.
關於為何如此, 我們也問過醫生一堆問題, 醫生提出減胎的建議。 這個辦法或許行得通, 但可能會為我和另一個 健康的胎兒帶來風險, 於是我們決定讓他足月出生。 那時我懷孕三個月, 還要等待 6 個月, 而且要妥善控制自己的血壓和情緒。 感覺有如一個室友在那六個月裡 用上膛的槍指著我。 而我瞪著那個槍口良久, 直到我從黑暗中看到一線曙光。 雖然我們不能避免悲劇, 但我為湯瑪斯短暫的一生, 找到了些許積極的影響。
So I asked my nurse about organ, eye and tissue donation. She connected with our local organ-procurement organization, the Washington Regional Transplant Community. WRTC explained to me that Thomas would probably be too small at birth to donate for transplant, and I was shocked: I didn't even know you could be rejected for that. But they said that he would be a good candidate to donate for research. This helped me see Thomas in a new light. As opposed to just a victim of a disease, I started to see him as a possible key to unlock a medical mystery.
於是我問護士有關捐贈器官等事情。 她聯絡了本地的器官捐贈組織, 華盛頓地區移植協會(WRTC)。 這所協會向我解釋 湯瑪斯出生時可能太小, 難以把他的器官移植到其他人。 我很震驚: 我不知道竟然連你們 也會拒絕接受捐贈。 但他們說他很適合捐贈做硏究。 這樣令我對湯瑪斯有了新看法, 與其只是做一個疾病的受害者, 我倒發覺他會是打開 醫學謎團的鎖匙。
On March 23, 2010, the twins were born, and they were both born alive. And just like the doctor said, Thomas was missing the top part of his skull, but he could nurse, drink from a bottle, cuddle and grab our fingers like a normal baby, and he slept in our arms. After six days, Thomas died in Ross's arms surrounded by our family.
2012 年 3 月 23 日, 雙胞胎出生了,兩人都活下來, 正如醫生說過, 湯瑪斯失去了頭骨的頂部, 但他可以喝奶, 喝奶瓶裡的奶。 像正常的嬰兒般依偎和 抓緊我們的手指。 還躺在我們的臂彎睡覺。 六天後,湯瑪斯躺在羅斯懷裡逝世, 全家人都陪伴著他。
We called WRTC, who sent a van to our home and brought him to Children's National Medical Center. A few hours later, we got a call to say that the recovery was a success, and Thomas's donations would be going to four different places. His cord blood would go to Duke University. His liver would go to a cell-therapy company called Cytonet in Durham. His corneas would go to Schepens Eye Research Institute, which is part of Harvard Medical School, and his retinas would go to the University of Pennsylvania.
我們通知 WRTC 後,他們派車 把他送到國家兒童醫療中心。 數小時後,我們收到器官 摘除成功的通知, 捐贈的器官將會送到 4 處不同的地方。 他的臍帶血送到社克大學。 肝臟送到位於德罕城的 一所叫 Cytonet 細胞治療公司。 眼角膜送到 Schepens 眼科硏究院, 它隸屬於哈佛大學醫學院, 而視網膜被送到賓卅大學。
A few days later, we had a funeral with our immediate family, including baby Callum, and we basically closed this chapter in our lives. But I did find myself wondering, what's happening now? What are the researchers learning? And was it even worthwhile to donate?
數日後,我們舉行了喪禮, 當日嬰兒卡勒也有出席, 大致上我們人生的這一節 已告一段落。 但我感到納悶現在發生什麼事? 硏究學者正在硏習什麼? 是否值得捐贈?
WRTC invited Ross and I to a grief retreat, and we met about 15 other grieving families who had donated their loved one's organs for transplant. Some of them had even received letters from the people who received their loved one's organs, saying thank you. I learned that they could even meet each other if they'd both sign a waiver, almost like an open adoption. And I was so excited, I thought maybe I could write a letter or I could get a letter and learn about what happened. But I was disappointed to learn that this process only exists for people who donate for transplant. So I was jealous. I had transplant envy, I guess.
WRTC 邀請我和羅斯參加哀傷靜修。 我們見了 15 個喪親家庭, 他們把心愛親人的器官捐贈出來。 有些家庭甚至收到 來自那些器官捐贈獲得者的感謝信。 我聽說雙方甚至為了見面 要簽署棄權聲明, 就好像是公開領養一樣。 我非常興奮,心想或許可以寫一封信 或者收到一封信,知道後來怎樣。 但是我非常失望,因為得知這些過程 只有捐贈器官移植的家庭才會經歷。 我猜想自己可能忌妒別人移植器官。
(Laughter)
(笑聲)
But over the years that followed, I learned a lot more about donation, and I even got a job in the field.
但是接下來的幾年, 我對器官捐贈認識了不少, 甚至在這個領域找到工作。
And I came up with an idea. I wrote a letter that started out, "Dear Researcher." I explained who I was, and I asked if they could tell me why they requested infant retinas in March of 2010, and I asked if my family could visit their lab. I emailed it to the eye bank that arranged the donation, the Old Dominion Eye Foundation, and asked if they could send it to the right person. They said that they had never done this before, and they couldn't guarantee a response, but they wouldn't be an obstacle, and they would deliver it.
跟著我有一個想法。 我寫了一封信,開始是這樣說: 「親愛的硏究學者。」 我先解釋自己是誰, 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, 還問他們讓我們參觀那𥚃的實驗室。 我電郵到負責安排捐贈事宜的眼庫 「老自治領州眼睛基金會」, 我問他們可否轉寄給我要找的人。 他們說以往從未做過這樣的事情, 而且不能擔保有回應, 但他們不會作難, 他們一定幫忙轉寄。
Two days later, I got a response from Dr. Arupa Ganguly of the University of Pennsylvania. She thanked me for the donation, and she explained that she is studying retinoblastoma, which is a deadly cancer of the retina that affects children under the age of five, and she said that yes, we were invited to visit her lab.
兩日後,我收到答覆, 那是來自賓州大學的艾魯芭博士。 她感謝我的捐贈, 還説她正在硏究視網膜細胞瘤, 那是一種致命的視網膜癌症, 影響五歲以下的小童, 她邀請我們到訪她的實驗室。
So next we talked on the phone, and one of the first things she said to me was that she couldn't possibly imagine how we felt, and that Thomas had given the ultimate sacrifice, and that she seemed to feel indebted to us. So I said, "Nothing against your study, but we didn't actually pick it. We donated to the system, and the system chose your study. I said, "And second of all, bad things happen to children every day, and if you didn't want these retinas, they would probably be buried in the ground right now. So to be able to participate in your study gives Thomas's life a new layer of meaning. So, never feel guilty about using this tissue."
其後我們電話交談, 其中有一件事她最想對我說, 就是她無法想像我們的感受, 湯瑪斯終極的奉獻 令她感到好像虧欠了我們。 於是我說:「我不是反對妳的硏究, 我們其實無從選擇, 我們捐贈到體制內, 它選擇了你的研究。 其次是每天都有兒童 發生不幸的事情, 如果妳不要這些視網膜, 它們很可能已經長埋地下。 所以能夠為妳的硏究出一分力, 將會為湯瑪斯的生命添上新意義。 請不要因為採用這些組織而內疚。」
Next, she explained to me how rare it was. She had placed a request for this tissue six years earlier with the National Disease Research Interchange. She got only one sample of tissue that fit her criteria, and it was Thomas's.
跟著她向我解釋那些組織非常罕有, 她早在 6 年前已向 國家疾病交流硏究院 要求採用這些組織。 最後只得一個組織樣本 符合她的要求, 那就是湯瑪斯的組織。
Next, we arranged a date for me to come visit the lab, and we chose March 23, 2015, which was the twins' fifth birthday. After we hung up, I emailed her some pictures of Thomas and Callum, and a few weeks later, we received this T-shirt in the mail.
其後我們安排了日子到訪實驗室, 選擇了 2015 年 3 月 23 日, 那天是雙胞胎的 5 歲生日。 掛斷電話後,我電郵了幾張 雙胞胎照片給她, 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 and we went for a road trip. We met Arupa and her staff, and Arupa said that when I told her not to feel guilty, that it was a relief, and that she hadn't seen it from our perspective. She also explained that Thomas had a secret code name. The same way Henrietta Lacks is called HeLa, Thomas was called RES 360. RES means research, and 360 means he was the 360th specimen over the course of about 10 years.
再過幾個月後,羅斯、卡勒和我 一起擠進車子踏上旅程。 我們跟艾魯芭和她的職員見面, 艾魯芭說當我叫她不要內疚時, 她不禁舒了一口氣, 還提到她沒有從我們的角度看事情。 她告訴我們湯瑪斯有一個密碼名字, 就像海莉耶塔·拉克斯叫海拉一樣, 湯瑪斯叫做 RES 360。 RES 的意思是硏究, 360 代表研究的十年過程中, 他是第 360 個標本。
She also shared with us a unique document, and it was the shipping label that sent his retinas from DC to Philadelphia. This shipping label is like an heirloom to us now. It's the same way that a military medal or a wedding certificate might be.
她還讓我們看一份不尋常的文件。 那是一張送貨單, 表示湯瑪斯的視網膜 從華盛頓送到費城。 現在這張單子彷彿成為 我們的傳家寶, 等同軍事獎章或結婚證書。
Arupa also explained that she is using Thomas's retina and his RNA to try to inactivate the gene that causes tumor formation, and she even showed us some results that were based on RES 360. Then she took us to the freezer and she showed us the two samples that she still has that are still labeled RES 360. There's two little ones left. She said she saved it because she doesn't know when she might get more. After this, we went to the conference room and we relaxed and we had lunch together, and the lab staff presented Callum with a birthday gift. It was a child's lab kit. And they also offered him an internship.
艾魯芭還說她正在利用 湯瑪斯的視網膜和 RNA, 試圖阻止那些形成腫瘤的基因活動。 她甚至給我們看根據 RES 360 硏究得到的結果。 跟著她帶我們往冷涷櫃, 然後展示兩個她一直保存的樣本, 仍舊標示 RES 360。 那裡剩下兩個小小的樣本。 她說她保存下來, 因為她不知道何時 才會收到更多樣本。 其後我們到了會議室, 大家休息一會,然後吃午飯, 接著職員送給卡勒一份生日禮物。 那是一份兒童實驗室工具包, 還聘請他做實習生。
(Laughter)
(笑聲)
So in closing, I have two simple messages today. One is that most of us probably don't think about donating to research. I know I didn't. I think I'm a normal person. But I did it. It was a good experience, and I recommend it, and it brought my family a lot of peace. And second is if you work with human tissue and you wonder about the donor and about the family, write them a letter. Tell them you received it, tell them what you're working on, and invite them to visit your lab, because that visit may be even more gratifying for you than it is for them. And I'd also like to ask you a favor. If you're ever successful in arranging one of these visits, please tell me about it.
最後我今天帶來兩個簡單的信息, 一是大多數人不會想到 捐贈器官作硏究。 我知道我以前一定不會, 因為我認為自己是個普通人。 但我捐贈了。 那是一次很好的經歷,我樂意推薦, 它讓我們一家人心情得以平伏。 二是如果你從事人體組織的研究, 想到捐贈者和他的家人, 寫一封信給他們。 告訴他們你收到了, 正在做什麼工作, 邀請他們來探訪你的實驗室, 因為那次探訪可能令你 比他們還要高興。 我也想請求你們幫個忙。 如果你們成功地 做了一次這樣的探訪, 請告訴我。
The other part of my family's story is that we ended up visiting all four facilities that received Thomas's donations. And we met amazing people doing inspiring work. The way I see it now is that Thomas got into Harvard, Duke and Penn --
我們家庭其餘的經歷, 就是我們探訪了那些接受 湯瑪斯所有捐贈的四間機構。 碰到出色的人材, 做令人鼓舞的工作。 我覺得好像是湯瑪斯進了哈佛大學、 社克大學和賓州大學。
(Laughter)
(笑聲)
And he has a job at Cytonet, and he has colleagues and he has coworkers who are in the top of their fields. And they need him in order to do their job. And a life that once seemed brief and insignificant revealed itself to be vital, everlasting and relevant. And I only hope that my life can be as relevant.
而且他在 Cytonet 還有份工作。 他有同事和幫手, 他們都是那行業的頂尖人物, 需要湯瑪斯才能完成他們的工作。 一個曾經似乎是短暫 而微不足道的生命, 現在變得那麼重要、 永恆和意義重大。 我只希望我的生命變得有意義。
Thank you.
謝謝。
(Applause)
(掌聲)