Name: 【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))
Uploaded: 2021-01-14T07:29:48.000Z
Duration: 10 min 18 s

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時。

and I knew that that meant we had a higher risk

So, Ross and I researched the standard birth defects,

魯斯跟我便研究常態的先天缺陷

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.

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。

Babies with this diagnosis typically die in utero

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

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

根據醫生所判，似乎是健康的。

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，

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.

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,

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.

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

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

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

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.

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

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.

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,

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，

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.

Thomas was missing the top part of his skull,

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

After six days, Thomas died in Ross's arms

六天後，湯瑪斯躺在魯斯懷裡逝世

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.

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.

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。

眼角膜送到Schepens眼科硏究院，

and his retinas would go to the University of Pennsylvania.

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

and we basically closed this chapter in our lives.

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

但我感到納悶現在發生什麼事？

WRTC invited Ross and I to a grief retreat,

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.

他們把心愛親人的器官捐贈出來

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

I learned that they could even meet each other

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

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

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

我猜想自己可能炉忌別人移植器官。

我寫了一封信，開始是這樣說：

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

and I asked if my family could visit their lab.

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

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.

They said that they had never done this before,

我問他們可否分配給合適的人選

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.

這樣難不倒我，他們一定回覆。

【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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【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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