您现在的位置: 纽约时报中英文网 >> 纽约时报中英文版 >> 观点 >> 正文

不要看着你的宝贝痛苦死去

更新时间:2017-7-14 10:59:40 来源:纽约时报中文网 作者:佚名

You Should Not Have Let Your Baby Die
不要看着你的宝贝痛苦死去

Sam, your newborn son, has been suffocating in your arms for the past 15 minutes. You’re as certain as you can be that he is going to die in the next 15. He was born two days ago with “trisomy 18,” a disease that proved no obstacle to his cementing himself immediately and forevermore as the love of your life. Your wife has already composed his own lullaby, “Sam, Sam, the Little Man.” But she and you and your three other children have spent the past 24 hours learning about the incredible uphill battle Sam faces.

在过去15分钟里,你刚出生的儿子山姆(Sam)在你臂弯里窒息。你非常确定,在接下来的15分钟里,他会死去。两天前出生时,他被诊断患有“18-三体综合征”。结果证明,这种疾病并没有阻止他立刻并永远成为你们一生的挚爱。你的妻子已经专门给他写了一首摇篮曲:“山姆,山姆,小小人儿。”但是,在过去的24小时里,你和妻子以及其他三个孩子得知了山姆面临着极其困难的战斗。

“Trisomy” means “three chromosomes.” Each cell in your son’s body should have a healthy pair of the chromosomes scientists call No. 18. The unkind twists of the genetic lottery have given him instead a crippling threesome.

“三体”指的是“三个染色体”。你儿子身体里的每一个细胞都应该拥有一对科学家称为第18号的健康染色体。然而,基因命运的残酷改变却给了他第三个严重致畸的染色体。

Sam was born breech in an emergency procedure in Mary Greeley Hospital, in Ames, Iowa. You and your wife accepted the attending physician’s advice to Life Flight him immediately in a helicopter to the Infant Intensive Care Unit at the Iowa City Hospitals. You were told that Sam could not breathe on his own, although no one ever asked whether you approved his being hooked up to a ventilator. You overheard the emergency personnel relaying in medicalese the reasons for the flight to Iowa City: microcephaly, low-set ears, flat midface, short stature, proximally placed thumb and potentially abnormal male genitalia. All signs, you have since learned, of genetic abnormality, and indicators that he will be, as a friend puts it — choking on the words — “mentally retarded.”

山姆是在艾奥瓦州埃姆斯市玛丽·格里利医院(Mary Greeley Hospital)的紧急手术中以臀位出生的。你和妻子接受了主治医生的建议,用医用直升机将他立刻送往艾奥瓦市立医院(Iowa City Hospitals)的婴儿重症监护室。你被告知,山姆无法自主呼吸,虽然甚至没人问你是否同意给他连上呼吸机。你无意中听到急救人员用医疗术语转告用飞机送往艾奥瓦城的原因:小头畸形,耳位低,面中部扁平,身材矮小,拇指近端,可能存在男性生殖器官畸形。你后来知道,所有这些都是基因异常的症状,而且有迹象表明他会“智力迟钝”——你的一个朋友艰难地说出了这几个字。

Not all people with trisomy 18 have problems. The literature reports a dozen cases of individuals living for 10 years, and S.O.F.T., a trisomy 18 support group, lists even more living into their 20s and 30s. Those with the conditions known as mosaicism and translocation of the 18 chromosome may live relatively long and happy lives, bring joy to their parents, siblings and friends, and be relatively free of adverse symptoms. But there is a wide range of disorders associated with trisomy, and for those with Sam’s symptoms, life expectancy is brutally short.

不是所有患18-三体综合征的人都有问题。根据文献报告,有十几位患者活了10年。18-三体综合征支持组织SOFT甚至报告称,有些患者活到了20多岁或30多岁。还有些具有镶嵌和易位症状的患者可能活的时间更长,更幸福,给父母、姊妹和朋友带来快乐,而且没有负面症状。三体综合征有各种功能障碍,具有山姆这种症状的患者,预期寿命极短。

Sam’s case is classified as one of the worst. His brain cannot regulate his lungs. He grew successfully in your wife’s body and came to term because her blood provided him with oxygen. Now that his mother can no longer breathe for him, there is, the genetic counselor gently tells you, little chance that he will ever breathe on his own.

山姆的病例属于最糟糕的一种。他的大脑无法控制自己的肺。他在你妻子的身体里成功长大,适应了环境,因为母亲的血液为他提供了氧气。现在,他的妈妈无法再帮他呼吸,基因顾问温和地告诉你,他自主呼吸的可能性很小。

Some 1,100 infants are born annually in this country with trisomy 18. Many of them die of heart failure or apnea, irregular breathing that stops temporarily. Sam cannot breathe on his own at all. In an era of less technologically sophisticated medicine, your wife suggests, Sam would have died at birth? Yes. Even with today’s respirators, cardiac support equipment and antibiotics, nearly 30 percent will die in the first month; 90 percent will die before their first birthday. Of those who survive, most will have radical cognitive limitations, a condition the most recent revision of the Diagnostic and Statistical Manual of Mental Disorders refers to as “profound intellectual disability.”

美国每年大约有1100名婴儿出生时患有18-三体综合征。很多患者死于心脏衰竭或呼吸暂停,也就是有时会暂停的不规律呼吸。山姆完全无法自主呼吸。你的妻子问道,在医疗技术不发达的年代,山姆是不是出生时就会死去?是的。即使靠着如今的呼吸机、心脏支持设备和抗生素,近30%的患儿也会在第一个月死去,90%的患儿会在一岁生日前死去。那些活下来的患者大多会有严重的认知缺陷,根据最新版本的《精神障碍诊断和数据手册》(Diagnostic and Statistical Manual of Mental Disorders),这种症状被称为“深度智力障碍”。

How do you know? You pose the question to Sam’s geneticist, a kindly man in his mid-40s. He measures his response. He has an M.D. and a Ph.D., and has worked with trisomy infants for 15 years. You like him. You hear in his voice the ring of years of medical practice, scientific research and practical wisdom. You see in his eyes the face of a father. Well, he says, as to the diagnosis of the genetic problem, the results of chromosome analysis are accurate 99.9 percent of the time. As for the prognosis? Unfortunately, Sam seems to have a version of trisomy 18 that makes it impossible for his brain to successfully stimulate and coordinate the activities of the respiratory tract.

你是怎么知道的呢?你向山姆的遗传学专家提出这个问题。他是一个和蔼的40多岁男人。他在思量怎么回答好。他拥有医学博士学位,已经从事三体综合征研究和治疗15年。你喜欢他。从他的声音里,你能听出多年的医疗实践、医学研究和从医智慧。从他的眼睛里,你能看见一位父亲的脸庞。是这样,他说,在基因状况的诊断方面,目前染色体分析的准确率达到99.9%。那么,诊断结果是什么呢?不幸的是,山姆的18-三体似乎让他的大脑不可能成功地刺激和协调呼吸道的活动。

Are you sure? What would happen if you removed that air hose taped to his face? Have you tried it? Yes, once, for a few seconds. His lungs showed no signs of beginning to operate on their own. It would be inhumane to experiment on him by leaving the tube out for any longer period of time. He cannot breathe.

你确定吗?如果你移除粘在他脸上的气管会发生什么?你们试过了吗?是的,试过一次,拔掉了几秒钟。他的肺没有显示出任何开始自主运作的迹象。为了试验而把管子移除更长时间将是不人道的。他无法呼吸。

But couldn’t that change? Yes. Some trisomy 18 babies in Sam’s condition eventually improve to the point at which they no longer need the respirator. Some leave the hospital and begin to respond to their parents’ affection. But a majority never leave the hospital, never respond to the presence of others and die while still connected to the respirator.

但那有可能改变吗?有可能。有些和山姆症状一样的18-三体综合征婴儿最终有所改善,不再需要呼吸机。有些离开医院,开始对父母的疼爱做出反应。但大多数始终没有离开医院,始终没有对其他人的存在做出过反应,还连在呼吸机上时就去世了。

What are the choices? Some parents choose to use all possible means of continuing their child’s life in the hope that their child will beat the odds and eventually overcome problems. Others choose to let the children die to spare the babies the pain of the ordeal.

我们有哪些选择?有些父母选择使用一切办法延续孩子的生命,希望孩子能够战胜逆境,最终克服这些问题。还有些选择让孩子死去,免受痛苦的折磨。

Forget the statistics and what others do or don’t do. We would like to know what our Sam’s chances are for reaching the point where his life is valuable to him. But there is no answer to that question. No one can tell you whether your son’s life is worth living from his perspective, or yours. We cannot say whether your son will ever breathe on his own or look at you. We can say only that the literature suggests the odds are stacked heavily against him.

别管统计数据,别管别人做了什么或者没做什么。我们只想知道我们的山姆是否有机会,能让生命对他来说达到有价值的程度。但是这个问题没有答案。没有人可以告诉你,从你儿子自己的角度来说,或者从你的角度来说,他是否值得活下去。我们不能说你的儿子是否可以自主呼吸或看着你。我们只能说,研究表明,他的机会非常小。

You and your wife had no warning during the pregnancy that the child might be genetically abnormal. You were offered the services of amniocentesis, a test that may have revealed his condition. You and your wife refused to have genetic testing done on the fetus because your wife opposes abortion on theological and moral grounds. Knowing ahead of time that the child was genetically abnormal would not have provided any useful information. Genetic testing is done to allow parents the choice to abort fetuses with severe problems. But your wife would never abort her baby, so there was no point in having the tests performed.

在孕期,没有人警告你和妻子说,孩子可能有基因异常。你们有机会进行羊水穿刺检查,这种测试可能会揭示他的状况。你们拒绝对胎儿进行基因检测,因为你妻子从神学和道德角度拒绝堕胎。因此提前得知孩子具有基因异常不会提供任何有用的信息。基因测试是为了允许父母选择堕掉具有严重问题的胎儿。但是你的妻子永远不会堕掉她的宝宝,所以没有必要进行测试。

The two of you have support in deciding to let your baby die: your wife’s best friend from church, her mother and sister from 2,000 miles away, your own mother and father, your two brothers and sister, and every member of their families, gathered from 300 miles away. They help you think through the decision to remove the air tube. They squirm with you, hesitating to give their opinions. In the end, they express support for your decision. Your brother calls it “courageous.”

在决定让宝宝死亡时,你们两人得到了帮助:你妻子教会里最好的朋友和她远在2000英里之外的母亲和姊妹,还有你自己的母亲和父亲,你的两个兄弟和一个姊妹,以及他们的所有家庭成员,他们都从300英里之外赶来聚在一起。他们可以帮助你思考拔掉呼吸管的决定。他们与你一起局促不安,犹豫地对你发表意见。最后,他们表示支持你的决定。你的兄弟把这称之为“勇敢”。

There seems to you both a difference between killing your baby and letting him die. You are letting Sam die. Your father gathers the family, nearly 20 adults and children, in the room. You hold hands, collectively sing a psalm, weep through Grandpa’s prayer. Everyone leaves. Your wife tries to sing Sam’s lullaby to him, one last time, goodbye, Sam, but her voice fails her. She hands him to you. She cannot bear to go through it. Your brother and mother have offered to sit with you, but you decide it is something you must do alone. Just you and Sam.

在你看来,杀死你的宝宝和让他死去,二者之间似乎有所区别。你要让山姆死去。你父亲把全家人召集到一个房间里,一共有将近20个成年人和孩子。你们握起手来,合唱着一首赞美诗,流着泪听完祖父的祷告。所有人都离开了。你的妻子试图给山姆唱摇篮曲,这是最后一次了,山姆,再会,但是她哽咽失声。她把山姆交给你。她无法承受。你的兄弟和母亲提出可以陪你,但你决定你必须独自完成这件事。只有你和山姆。

The nurse comes in, mute. You look at him, sleeping. He seems at peace. You nod your head. She gently pulls the tube. It slides out quickly, as though he were helping to expel it. Without his lifeline, he does not move. A minute later, his eyes open. It is the first time you have seen them. His head jerks slightly forward. He does not cry. He gasps silently for breath. His eyes close. You almost yell for the nurse, to beg her to put it back in. To keep from doing so, you pray, arguing with God that letting him die is best for him. After five minutes, his face pales, then turns a sickly purple. His tiny chest convulses irregularly in an unsuccessful attempt to draw air into the lungs. After 20 minutes, he lies still. His fingers turn gray.

护士进来了,房间里鸦雀无声。你看着他,他在睡觉。他看上去似乎很平静。你点了点头,她轻轻拉出了管子。它很快滑落出来,好像他也在帮忙把它赶走。没有了这条生命线,他一动不动。一分钟后,他的眼睛睁开了。这是你第一次看到他的眼睛。他的头稍微向前抽搐。他没有哭。他只是默默挣扎着呼吸。他的眼睛又闭上了。你几乎想大声叫来护士,请求她把管子放回来。为了阻止自己这样做,你祈祷,与上帝争辩,说对他最好的方式还是让他死去。五分钟后,他脸色苍白,然后变成了病态的紫色。他小小的胸部不规律地抽搐,试图将空气吸入肺部,却没有成功。二十分钟后,他安静地躺在那里。他的手指变灰了。

Thirty minutes. There are no visible signs of life. You rock his limp body as tears fall on the blue blanket. You wonder what sort of beast you are. Forty-five minutes. Grandma looks in, ashen faced, seeing in a glance that it is over. Shortly your wife appears. She immediately takes her son’s body in her arms and coddles him. She sits there with him for three hours.

三十分钟。没有明显的生命迹象。你摇晃着他毫无生气的身体,泪水落在蓝色的毯子上。你想着自己到底是个怎样的畜生。四十五分钟。祖母进来看望,面如死灰,一眼就知道一切已经结束了。很快,你的妻子出现了。她立刻把儿子的身体搂在怀里,爱抚他。她坐在那儿,和他一起待了三个小时。

You should not have let your baby die. You should have killed him.

你不应该让你的宝宝死去。你应该杀死他。

This thought occurs to you years later, thinking about the gruesome struggle of his last 20 minutes. You are not sure whether it makes sense to talk about his life, because he never seemed to have the things that make a life: thoughts, wants, desires, interests, memories, a future. But supposing that he had thoughts, his strongest thought during those last minutes certainly appeared to be: “This hurts. Can’t someone help it stop?” He didn’t know your name, but if he had, he would have said: “Daddy? Please. Now.”

几年后,想起他在最后20分钟的可怕挣扎,你产生了这样的想法。你不知道谈论他的生命是否有意义,因为他从来没能拥有过构成生命的东西:思想、需要、欲望、兴趣、回忆、未来。但是假设他有想法,在人生最后一分钟里,他最强烈的想法肯定会是:“这太痛苦了。谁能帮我停止它?”他不知道你的名字,但如果他知道,他会说:“爸爸?求求你。快。”

It seems the medical community has few options to offer parents of newborns likely to die. We can leave our babies on respirators and hope for the best. Or remove the hose and watch the child die a tortured death. Shouldn’t we have another choice? Shouldn’t we be allowed the swift humane option afforded the owners of dogs, a lethal dose of a painkiller?

对于可能死亡的新生儿的父母,医疗界似乎没有提供太多选择。我们可以让宝宝继续接在呼吸器上,希望产生最好的结果。或者拔掉软管,看着孩子备受痛苦地死去。难道我们不应该有另一个选择吗?一剂致命的药物或一粒止痛药,那些狗主人可以选择的快速而人道的选项,难道我们就不可以有吗?

For years you repress the thought. Then, early one morning, remembering again those last minutes, you realize that the repugnant has become reasonable. The unthinkable has become the right, the good. Painlessly. Quickly. With the assistance of a trained physician.

几年来你压抑着这个想法。后来,一个清晨,你再次回忆起最后那几分钟,你意识到那令人憎恶的想法已经变成合情合理。从绝不可以,变成了对的、好的。无痛。迅速。在训练有素的医生帮助之下。

You should have killed your baby.

你本应该杀死你的宝宝。

“全文请访问纽约时报中文网,本文发表于纽约时报中文网(http://cn.nytimes.com),版权归纽约时报公司所有。任何单位及个人未经许可,不得擅自转载或翻译。订阅纽约时报中文网新闻电邮:http://nytcn.me/subscription/”

相关文章列表