Every Parent Wants to Protect Their Child. I Never Got the Chance.
Twice a day in our house, we turn on a projector that casts cartoon music videos on a blank stretch of wall.
我们每天两次在家里打开投影仪，将卡通音乐视频投射到空白的墙上。
The songs are catchy and bright and usually keep our toddler captivated for the amount of time we need him to hold still.
这些歌曲朗朗上口、明亮，通常会让我们的孩子在我们需要他保持静止的时间内保持着着迷。
“There are no monsters who live in our home,” goes one of my favorites.
“我们家里没有怪物，”我最喜欢的人之一说道。
“There’s only me and my family who live in our home / ’Cause there are no monsters that live here.” Up on the wall, two healthy-looking cartoon children learn not to be scared of the dark, while my son clutches my forearm and breathes dutifully into a mask.
“只有我和我的家人住在我们的家里/因为这里没有怪物。”墙上，两个看起来健康的卡通小孩正在学习不要害怕黑暗，而我的儿子则抓着我的前臂，尽职尽责地对着面罩呼吸。
Sometimes he spots something familiar — an animal with a noise he can make, a color he knows how to say — and rushes to point it out, only to have his voice muffled by medical equipment.
有时，他发现一些熟悉的东西——一种他能发出声音的动物，一种他知道如何说话的颜色——并急忙指出来，结果却被医疗设备掩盖了他的声音。
Unlike the home in the song, ours does have a monster, one that doesn’t hide under the bed or in the closet.
与歌曲中的家不同，我们的家确实有一个怪物，它不会躲在床底下或壁橱里。
Half of it lives in my husband’s DNA, half in mine.
它一半存在于我丈夫的 DNA 中，一半存在于我的 DNA 中。
We’re still figuring out what the whole thing looks like, but we do know it’s coming for our son.
我们仍在弄清楚整个事情是什么样子，但我们确实知道它是为我们的儿子而来的。
In lots of ways, it’s already here.
从很多方面来说，它已经在这里了。
In the most basic sense, this is why: Tag and I are both healthy carriers of mutations that cause the genetic disease cystic fibrosis.
从最基本的意义上来说，这就是原因：塔格和我都是导致遗传病囊性纤维化的突变的健康携带者。
Noah (a pseudonym) inherited two mutations, one from each of us, and this means he has the disease, which results from the body’s mishandling of chloride and sodium.
诺亚（化名）继承了两种突变，我们每个人都有一种突变，这意味着他患有这种疾病，这是由于身体对氯和钠的处理不当造成的。
On the outside, this means CF patients have extra-salty skin.
从表面上看，这意味着囊性纤维化患者的皮肤特别咸。
On the inside, it means they have thick, sticky mucus in their lungs, pancreas, and other organs, leading to digestive problems and low weight gain, clogged airways and trapped bacteria.
从内部来看，这意味着它们的肺部、胰腺和其他器官中有粘稠的粘液，导致消化问题、体重增加缓慢、气道堵塞和细菌滞留。
The excess mucus causes persistent lung infections, severely limiting patients’ abilities to breathe until, eventually, they no longer can.
多余的粘液会导致持续的肺部感染，严重限制患者的呼吸能力，直到最终不再呼吸。
People who have CF must treat it vigilantly, with physical therapy to clear airways, inhaled medications, and fistfuls of pills.
患有囊性纤维化的人必须警惕地治疗，通过物理治疗来清理呼吸道、吸入药物和服用少量药片。
Doing so takes lots of money and staggering amounts of time.
这样做需要大量的金钱和惊人的时间。
Time is important in describing life with cystic fibrosis: how many hours each day you spend on treatments (for my toddler son, two; for adults, up to four), how many weeks at a time you spend in the hospital (a couple, if you’re having a “tune-up” for a lung infection), how many months since you last saw a doctor (during periods of relative health, three).
在描述囊性纤维化的生活时，时间很重要：您每天花多少小时进行治疗（对于我蹒跚学步的儿子，两个小时；对于成年人，最多四个小时），您一次在医院呆多少周（如果您正在为肺部感染进行“调整”，则需要几个星期），距离您上次看医生有多少个月（在相对健康的时期，三个）。
How many years you can expect to live: In 2016, half of all reported deaths occurred before the age of 30.
您的预期寿命是多少年：2016 年，报告的死亡人数中有一半发生在 30 岁之前。
In the later stages of the disease, you might measure time between incidents of coughing up blood, keep track of how long you’ve been on oxygen full time, or, should you qualify for one, count the number of years you’re expected to live after a double lung transplant (about five).
在疾病的后期阶段，您可以测量咳血事件之间的时间间隔，记录您全职吸氧的时间，或者，如果您有资格获得吸氧，则计算双肺移植后的预计生存年数（大约五年）。
Most patients with CF die in a hospital setting, after a long, steady decline, of overwhelming lung infections.
大多数 CF 患者在长期、稳定下降后死于严重的肺部感染。
The first time more adults than children were living with cystic fibrosis was just three years ago, in 2014.
囊性纤维化患者的成年人数量首次超过儿童，就在三年前的 2014 年。
My son has always had CF and always will.
我儿子一直患有 CF，并且永远都会。
We first learned it was a possibility in April of 2016, when Noah was a week old.
我们第一次得知这种可能性是在 2016 年 4 月，当时诺亚只有一周大。
The hospital called to tell us that his newborn screening — a blood test that checks for various disorders not immediately apparent after birth — had come back abnormal.
医院打电话告诉我们，他的新生儿筛查（一种血液检查，检查出生后未立即显现的各种疾病）结果异常。
Noah needed something called a sweat test, the woman on the phone said, to see whether he had cystic fibrosis.
电话里的女士说，诺亚需要进行汗液测试，看看他是否患有囊性纤维化。
I told her this had to be a mistake.
我告诉她这一定是一个错误。
“If there were something wrong,” I insisted, “we would already know.” In a tone attempting to be gentle, she explained that this was not necessarily the case.
“如果有什么问题，”我坚持说，“我们早就知道了。”她用尽量温和的语气解释说，事实并非如此。
In an educational video about newborn screenings Tag and I watched soon after that phone call, people perching on stools described what it means when a baby needs a sweat test, which is exactly what it sounds like: an examination of an infant’s sweat.
在那通电话后不久，塔格和我观看了一段关于新生儿筛查的教育视频，坐在凳子上的人们描述了婴儿需要进行出汗测试意味着什么，这正是听起来的样子：检查婴儿的出汗。
Babies like Noah, we learned, need the test because their newborn screenings indicate they might have cystic fibrosis.
我们了解到，像诺亚这样的婴儿需要进行检查，因为他们的新生儿筛查表明他们可能患有囊性纤维化。
A woman with long hair told the camera that only a very small number of these babies actually have CF, holding her forefinger and thumb a hair’s width apart to demonstrate just how few.
一位长发女士告诉镜头，这些婴儿中只有极少数实际上患有CF，她用食指和拇指分开一根头发的宽度，以表明到底有多少。
I was impatient for my family to be safely outside that woman’s fingers, but because very young babies don’t make enough sweat to test, we had to wait another two weeks.
我迫不及待地想让我的家人安全地离开那个女人的手指，但因为很小的婴儿没有足够的汗水来进行测试，我们不得不再等两周。
On the day of Noah’s sweat test, the genetic counselor who took down our information was upbeat.
在诺亚进行汗液测试的那天，记下我们信息的遗传咨询师很乐观。
We sat across from her in a dim room kept warm; already, before the test started, I could feel Noah overheating from the clothes we’d been instructed to dress him in — a hat, a sweater, thick socks.
我们坐在她对面，房间里昏暗而温暖。在测试开始之前，我就已经感觉到诺亚因为我们被要求给他穿的衣服而过热了——帽子、毛衣、厚袜子。
The counselor repeated what our pediatrician had already explained: how his newborn screening had shown just one mutation, how there were plenty of reasons besides cystic fibrosis (a long, jagged labor, a touch of jaundice) that could be responsible for the abnormal result.
咨询师重复了我们的儿科医生已经解释过的内容：他的新生儿筛查仅显示一种突变，除了囊性纤维化（长时间、锯齿状的分娩、轻微黄疸）之外，还有很多原因可能导致异常结果。
Also, she pointed out, I’d said I remembered having genetic tests during pregnancy.
她还指出，我说过我记得在怀孕期间做过基因测试。
Unless I had an extremely rare genetic mutation, a prenatal test would have caught mine.
除非我有极其罕见的基因突变，否则产前检查就会发现我的情况。
Later that day, when I called her back after a beer at our favorite bar, the genetic counselor sounded different.
那天晚些时候，当我在我们最喜欢的酒吧喝完啤酒后给她回电话时，遗传咨询师的声音听起来有所不同。
She’d been wrong about when the results would be ready for her to read.
她错误地估计了结果何时可以让她阅读。
They wouldn’t be in until the next day, she said, her voice newly hesitant.
他们要到第二天才会到，她说，声音变得有些犹豫。
Annoying is what I think Tag called that information.
我认为塔格将这些信息称为“烦人”。
We stopped by the grocery store; I probably nursed once we got home.
我们在杂货店停了下来；我们一到家我可能就开始哺乳了。
Noah must have gone down for a nap, because my hands were free when the counselor called again and asked whether I was alone.
诺亚一定是下去小睡了，因为当辅导员再次打电话问我是否独自一人时，我的手已经空了。
I put the phone on speaker, and Tag sat down next to me on the couch, our heads bent underneath a shelf I realized later I’d always hated.
我把电话打开扬声器，塔格坐在我旁边的沙发上，我们的头低在一个架子下面，后来我意识到我一直讨厌这个架子。
The counselor claimed she’d gone back and was now able to read the results — which must have been a lie, one I almost wish I’d called her out on, if it hadn’t been so hilariously and heartbreakingly kind in its intention.
咨询师声称她已经回去了，现在可以看到结果了——这肯定是一个谎言，我几乎希望我能叫她出来，如果它的意图不是如此搞笑和令人心碎的话。
I’ve seen the results for myself, and the numbers could not be clearer.
我亲眼目睹了结果，数字再清楚不过了。
The normal range for chloride in an infant’s sweat is about 29 millimoles or less per liter.
婴儿汗液中氯化物的正常范围约为每升 29 毫摩尔或更少。
The sweat on Noah’s left arm came back at 68, his right at 71.
诺亚左臂上的汗水在 68 时恢复，右臂则在 71 时恢复。
“I know this is not what we were expecting,” the counselor said, choking up.
“我知道这不是我们所期待的，”辅导员哽咽地说。
My own voice rose; I asked the same question once, twice, three times.
我自己的声音也提高了；同样的问题我问了一次、两次、三次。
Our dog trotted over and peed on the rug, as if to express his own disbelief.
我们的狗小跑过来，在地毯上撒尿，好像是在表达他自己的怀疑。
I repeated myself again: How could this have happened?
我又重复了一遍：怎么会发生这种事？
The counselor explained her theory, which we found out later was not quite right.
辅导员解释了她的理论，但我们后来发现它并不完全正确。
All theories aside, ten years ago, when Tag and I walked toward each other in a dark bar off the side of a highway in Montana, this is what we had no idea we were walking toward: the one-in-four chance of creating a child permanently unwell.
抛开所有理论不谈，十年前，当塔格和我在蒙大拿州高速公路旁的一家黑暗酒吧里走向彼此时，我们并不知道我们正在走向：四分之一的机会让孩子永久不适。
Because we both carry a CF mutation, there is a 50 percent chance any child of ours will be born a healthy carrier, like we are.
因为我们都携带 CF 突变，所以我们的孩子有 50% 的机会出生时是健康的携带者，就像我们一样。
There’s a 25 percent chance of a baby with no mutations at all.
婴儿有 25% 的机会完全没有突变。
And there’s a 25 percent chance of a baby with two disease-causing mutations, like Noah.
像诺亚一样，婴儿有两种致病突变的可能性为 25%。
But if you had known, what then?
但如果你知道了，那又怎样呢？
a woman asked me earlier this year, shaking her head, her smile soft with pity.
今年早些时候，一位女士摇着头问我，她的笑容温柔而充满怜悯。
If I responded at all, and I’m not sure I did, I can’t remember what I said.
如果我做出了回应，而且我不确定自己做了什么，我也不记得自己说过什么。
But I know I did not use the word abortion, or bring up our legal situation, or explain the concept of “wrongful birth.” In a roomful of people I barely knew, with Noah pushing a plastic car back and forth over the carpet nearby, I did not tell her that I do know exactly what it is I would have done.
但我知道我没有使用堕胎这个词，也没有提出我们的法律状况，也没有解释“错误出生”的概念。在一屋子我几乎不认识的人中，诺亚在附近的地毯上来回推着一辆塑料车，我没有告诉她我确实知道我会做什么。
During my first pregnancy appointment, at eight weeks along, it was Tag who asked the midwife whether most people did genetic testing.
在我第一次怀孕预约中，也就是八周后，泰格问助产士是否大多数人都做了基因检测。
She told us most people did.
她告诉我们大多数人都这样做。
We agreed to the tests; the midwife wrote up the order.
我们同意进行测试；助产士写下了医嘱。
We were laying the foundation of a plan we’d discussed before I’d even gotten pregnant: If something were wrong, we’d decided, we wouldn’t continue the pregnancy.
我们正在为我怀孕之前就讨论过的计划奠定基础：如果出现问题，我们就决定不再继续怀孕。
Before we left that appointment, the midwife reminded us of the practice’s policy on test results.
在我们离开预约之前，助产士提醒我们该诊所关于测试结果的政策。
No news is good news.
没有消息就是好消息。
Unless tests showed something negative, no one would call us.
除非测试结果呈阴性，否则没有人会给我们打电话。
No one did.
没有人这么做。
Until Noah was diagnosed, we did not know the nature of my results.
在诺亚被确诊之前，我们不知道我的结果的性质。
Somewhere between the hospital that processed the results and the midwives who handled my care, something went awry, and the answer to the question we’d asked was never delivered.
在处理结果的医院和处理我的护理的助产士之间的某个地方出了问题，我们提出的问题的答案从未得到。
I saw the midwives at least once a month for the rest of my pregnancy.
在我怀孕的余下时间里，我每个月至少见一次助产士。
At every appointment, we were told how well everything was going.
每次约会时，我们都会被告知一切进展顺利。
But then, we could.
但那时，我们可以。
I could.
我可以。
Noah was diagnosed in May; I contacted a lawyer in June.
诺亚于五月被确诊；我六月份联系了一位律师。
I remember being so proud of myself for the way I did not cry when I explained everything over the phone — not even once.
我记得我为自己感到非常自豪，因为当我在电话中解释一切时，我没有哭——一次也没有。
I cut off our lawyer, Martha McBrayer, as she led up to the question and stopped her from asking it all the way: I would have had an abortion, I told her.
当我们的律师玛莎·麦克布瑞尔提出这个问题时，我打断了她的话，并阻止她一直问下去：我告诉她，我会堕胎。
You can’t discuss what happened to me without discussing abortion.
如果不讨论堕胎，你就不能讨论我身上发生的事情。
In what’s called a wrongful-birth case, plaintiffs sue a medical practitioner for the failure to diagnose or inform them of a disease or disability possible to detect in utero; it is understood that in almost all cases, the plaintiff would have aborted the pregnancy had she been able to make an informed decision.
在所谓的错误出生案件中，原告起诉医生未能诊断或告知他们可能在子宫内检测到的疾病或残疾；据了解，在几乎所有情况下，如果原告能够做出明智的决定，她都会堕胎。
The money awarded in wrongful-birth cases goes toward the cost — usually astronomically high — of the child’s medical care.
错误出生案件中获得的赔偿金将用于支付孩子的医疗费用（通常是天文数字）。
In other words, a mother desperate to help her child declares that she would not have had that child.
换句话说，一位渴望帮助自己孩子的母亲宣称她不会生下这个孩子。
Tag, Noah, and I met Martha for the first time at the diner across from our apartment.
塔格、诺亚和我第一次见到玛莎是在我们公寓对面的小餐馆。
Between explaining the particulars of medical malpractice, she stopped to smile at our baby.
在解释医疗事故的细节期间，她停下来对我们的宝宝微笑。
“He is just so present,” she exclaimed.
“他是如此的存在，”她惊呼道。
“Look at him — he’s like, I’m here .” I grinned back at her as hard as I could, as if the strength of a smile could eclipse why we were sitting in front of pancakes: the assertion that we would not have had him be here, or anywhere, had we known.
“看看他——他就像，我在这儿。”我尽可能地对她微笑，仿佛微笑的力量可以掩盖我们坐在煎饼前的原因：我们断言如果我们知道的话，我们不会让他在这里或任何地方。
For the pro-lifers who oppose wrongful-birth suits, this paradox — what does it mean to fight for someone when what you’re fighting for is a missed chance at that person’s not existing?
对于那些反对错误出生诉讼的反堕胎者来说，这个悖论是——当你争取的只是错失一个人不存在的机会时，为某人而战意味着什么？
— is reason enough to eliminate the legal pathway altogether.
——有足够的理由完全消除法律途径。
Anti-abortion crusaders paint wrongful birth as an attack on those living with disability or disease; they accuse mothers like me of wishing our children had never been born, of seeking flawless “designer babies” free of health issues.
反堕胎斗士将错误生育视为对残疾或疾病患者的攻击；他们指责像我这样的母亲希望我们的孩子从未出生，寻求没有健康问题的完美“设计婴儿”。
The language probably doesn’t help: No birth is wrong , those against wrongful birth love to point out.
这种语言可能没有帮助：没有出生是错误的，那些反对错误出生的人喜欢指出。
Not long after we met with Martha, I went to gather my medical records from the midwives.
我们见到玛莎后不久，我去助产士那里收集我的医疗记录。
I told myself to wait until I got home, but instead I opened the envelope a block from my house, with Noah in the carrier and his face against my chest.
我告诉自己要等到家，但我却打开了距离我家一个街区的信封，诺亚在信封里，他的脸贴着我的胸口。
I remember holding the papers above his head to see the text:
我记得把纸举过头顶看文字：
Genetic counseling is recommended to discuss the potential clinical and/or reproductive implications of this result, as well as recommendations for testing other family members and, when applicable, this individual’s partner.
建议进行遗传咨询，以讨论该结果的潜在临床和/或生殖影响，以及测试其他家庭成员以及该人的伴侣（如果适用）的建议。
Because we’d been under the impression that nothing had come up on my prenatal genetic tests, the genetic counselor we saw the day of Noah’s sweat test had posited that I had a mutation too rare to be detected by the newborn screening.
因为我们一直以为我的产前基因测试没有任何结果，所以诺亚汗液测试当天我们见到的遗传咨询师认为我有一种罕见的突变，新生儿筛查无法检测到。
I don’t; Tag does.
我不知道；标签确实如此。
Mine isn’t just common — it’s the most common cystic-fibrosis gene mutation, capable of being detected by a basic genetic screening.
我的基因突变不仅常见，而且是最常见的囊性纤维化基因突变，能够通过基本的基因筛查检测出来。
In the sunlight, the recommendation grew starker, the distance widening between what could have happened and what did.
在阳光下，建议变得更加明显，可能发生的事情和已经发生的事情之间的距离越来越大。
The reproductive implication, meanwhile, continued his nap.
与此同时，生殖问题仍在他的午睡中继续。
Usually, people need a little bit of time to understand the conditions that created our situation in the first place.
通常，人们需要一点时间来了解最初造成我们这种情况的条件。
The summer after Noah was born, my sister-in-law came to visit; we were talking in the kitchen while he slept in the other room.
诺亚出生后的那个夏天，我的嫂子来看望他。我们在厨房聊天，而他则在另一个房间睡觉。
“But,” she said, trying to figure out what it would mean to sue over a disease that can’t be prevented or fixed, “if you had known — ” I interrupted her, wanting to rush ahead but promptly bursting into tears when I said it: “There would be no Noah.” I remember the look that crossed her face, how she nodded slowly and said, twice, “That’s a lot.”
“但是，”她说，试图弄清楚对一种无法预防或治愈的疾病提起诉讼意味着什么，“如果你知道——”我打断了她，本想冲进去，但当我说“就不会有诺亚了”时，我立即泪流满面。我记得她脸上的表情，她慢慢地点点头，说了两遍：“很多了。”
The more I discuss the abortion I didn’t have, the easier that part gets to say aloud: I would have ended the pregnancy.
我越多地讨论我没有堕胎的事情，那部分就越容易大声地说：我会结束怀孕。
I would have terminated.
我本来会终止的。
I would have had an abortion.
我本来会堕胎的。
That’s firmly in the past, and it is how I would have rearranged my actions, given all the information.
那已经成为过去了，鉴于所有信息，这就是我重新安排我的行动的方式。
It’s moving a piece of furniture from one place to another before anything can go wrong, the way we got rid of our wobbly side tables once Noah learned to walk.
它是在出现任何问题之前将一件家具从一个地方移动到另一个地方，就像诺亚学会走路后我们摆脱摇晃的边桌的方法一样。
What’s so acutely painful is what I didn’t quite mean to say to my sister-in-law, what all that past rearranging would mean right now: no Noah.
令我如此痛苦的是我本来不想对我的嫂子说的话，所有过去的重新安排现在意味着什么：不，诺亚。
Parents like me often feel betrayed by their child’s cystic-fibrosis diagnosis: Maybe there was medical malpractice, maybe an inherited mutation so rare it wasn’t detected prenatally.
像我这样的父母常常因为孩子的囊性纤维化诊断而感到背叛：也许存在医疗事故，也许是一种罕见的遗传突变，在产前没有被检测到。
Other parents have chosen to avoid any kind of testing, believing it’s their destiny to embrace whatever God or fate or genetics deals them.
其他父母选择避免任何形式的测试，相信拥抱上帝、命运或基因赋予他们的一切是他们的命运。
I’m horrified by the sanctimony that often accompanies this acceptance, especially when it’s admired, especially when it’s offered up by mothers who don’t “believe” in prenatal testing or who have more than one child with cystic fibrosis.
我对这种接受常常伴随着的虚伪感到震惊，尤其是当它受到钦佩时，尤其是当它是由那些不“相信”产前检测或有多个患有囊性纤维化的孩子的母亲提供的时候。
The women who willingly made choices that were never presented to me and chose a child’s suffering: Sometimes I hate them.
那些自愿做出从未呈现给我的选择并选择孩子的痛苦的女性：有时我讨厌她们。
I also hate the women who were supposed to care for me.
我也讨厌那些应该照顾我的女人。
I hate the faceless people at the lab.
我讨厌实验室里那些不露面的人。
I hate them ferociously, the way you hate a family member or the closest of friends.
我非常恨他们，就像你恨家人或最亲密的朋友一样。
I hate them the way you hate a spouse, for all the bad they caused, and how closely tied that bad is with good.
我恨他们，就像你恨配偶一样，因为他们造成了所有的坏事，以及坏事与好事的紧密联系。
I hate them for what feels like the slyest of deals: While my family’s life is now shaped around a disease I would never willingly bring into the world, we are a family because of them — unwittingly, they gave me my most precious gift.
我讨厌他们，因为他们感觉像是最狡猾的交易：虽然我家人的生活现在是围绕着一种我永远不会愿意带入世界的疾病而塑造的，但我们因为他们而成为一个家庭 - 不知不觉中，他们给了我最珍贵的礼物。
I hate them for making me a mother whose biggest mistake was becoming one.
我恨他们让我成为一名母亲，而我最大的错误就是成为一名母亲。
My son has blue eyes, curly blond hair, slightly crooked teeth.
我的儿子有蓝色的眼睛，金色的卷发，牙齿有点歪。
He’s daring, most of the time.
大多数时候，他都很大胆。
He’s afraid of doctors and anyone in a flapping coat.
他害怕医生和任何穿着飘动外套的人。
I want the people I hate to know these details about him.
我希望我讨厌的人知道他的这些细节。
I want them to be able to smell his soft breath in the morning, just before I strap a mask over his face so he can inhale medication.
我希望他们早上能够闻到他柔和的呼吸声，然后我将面罩戴在他的脸上，以便他可以吸入药物。
I want them to fathom telling a child no amount of treatment can make his disease go away, that people with CF are so likely to pass bacteria between each other they can’t be in the same room, that most men with CF are infertile, that every drinking fountain holds the risk of a lung infection.
我希望他们能够理解告诉孩子，再多的治疗也无法让他的疾病消失，患有囊性纤维化的人很可能在彼此之间传播细菌，他们不能待在同一个房间，大多数患有囊性纤维化的男性不育，每个饮水机都有肺部感染的风险。
I want them to feel all the moments in a life affected by this disease and experience what it’s going to be like, to be Noah.
我希望他们能够感受到生活中受这种疾病影响的所有时刻，并体验成为诺亚会是什么样子。
I want to take all the pain and disappointment he’ll have and drown them in it.
我想承受他所承受的所有痛苦和失望，并将他们淹没在其中。
But no matter whose fault it is, giving birth to a child with a terminal disease is something I did do.
但不管是谁的错，生下一个身患绝症的孩子是我所做的。
This is just as obvious as it is important: I am the one who was pregnant and gave birth to Noah.
这一点既明显又重要：我是怀孕并生下诺亚的人。
That I continued my pregnancy under mistaken pretenses feels like an irreparable violation, one that I don’t think any man — including the one who loves Noah as much as I do — is capable of understanding.
我以错误的借口继续怀孕，这感觉像是一种无法挽回的侵犯，我认为任何男人——包括像我一样深爱诺亚的男人——都能理解这一点。
A woman once described the grief of her miscarriage to me as a “biological loneliness”; that’s something close to what wrongful birth feels like.
一位女士曾向我描述她流产的悲痛是“生理上的孤独”；这类似于错误出生的感觉。
A biological remorse.
一种生理上的悔恨。
Logically, I know the guilt belongs elsewhere.
从逻辑上讲，我知道罪孽属于其他地方。
But biologically, I feel a deep responsibility, a primal and uniquely female pain.
但从生物学角度来说，我感受到了一种深深的责任，一种原始而独特的女性痛苦。
In 1975, a woman named Dortha Biggs, then Dortha Jacobs, successfully sued her doctor for not diagnosing her with rubella — known to cause a host of birth defects — while she was pregnant with her daughter Lesli.
1975 年，一位名叫多莎·比格斯 (Dortha Biggs)（后来的多莎·雅各布斯 (Dortha Jacobs)）的妇女成功起诉她的医生，因为她在怀女儿莱斯利 (Lesli) 时没有诊断出她患有风疹（众所周知，风疹会导致多种出生缺陷）。
Hers was the case that established the legal concept of wrongful birth, paving the way for families like mine.
她的案件确立了非正常出生的法律概念，为像我这样的家庭铺平了道路。
Lesli, who’s now in her late 40s, lives in an assisted-living home; because of the rubella that infected her cells in utero, Lesli cannot see, hear, talk, or walk.
莱斯利 (Lesli) 现年 40 多岁，住在辅助生活之家。由于风疹在子宫内感染了她的细胞，莱斯利无法看、听、说话或行走。
She has severe intellectual disabilities and has had over 20 surgeries.
她患有严重的智力障碍，做过20多次手术。
I was afraid of what her mother might think of me, with a son like mine, who looks relatively okay between treatments.
我担心她母亲会对我有什么看法，因为我有一个像我这样的儿子，在两次治疗之间看起来还不错。
But Dortha was easy to find and readily willing to speak with me, insistent on asking about my child before talking about her own.
但多莎很容易找到，而且很乐意与我交谈，坚持先询问我孩子的情况，然后再谈论她自己的孩子。
Dortha’s voice was calm during most of our talk, but it did speed up once, after I brought up anger.
在我们谈话的大部分时间里，多莎的声音都很平静，但在我提出愤怒之后，它确实加快了速度。
“Oh, yeah,” she said.
“哦，是的，”她说。
“Oh, yeah.
“哦，是的。
” The last time Dortha saw the doctor she sued, the now-deceased Louis Theimer, was at a deposition more than 40 years ago.
多莎最后一次见到她所起诉的医生、现已去世的路易斯·泰默 (Louis Theimer)，是在 40 多年前的一次证词中。
In some ways, she respects him because he didn’t try to lie his way out of anything.
在某些方面，她尊重他，因为他没有试图通过撒谎来摆脱任何事情。
He never denied that Dortha asked about rubella while she was pregnant.
他从未否认多莎在怀孕期间询问过风疹问题。
“I don’t hate him,” she said, taking half a pause.
“我不恨他，”她停顿了一下说道。
“I don’t like him.” We both laughed a little before she grew serious again: “I don’t like what he did to me.” She told me about going back to Dr. Theimer to inform him Lesli had been born with the rubella virus in her body.
“我不喜欢他。”我们都笑了一会儿，然后她又变得严肃起来：“我不喜欢他对我做的事。”她告诉我要回到塞默医生那里，告诉他莱斯利出生时体内就带有风疹病毒。
“I’ll always remember,” she said, her voice full of fresh wonder even after all this time, “him looking at me and saying, ‘I’m just going to have to be more careful.’ ”
“我会永远记得，”她说，即使过了这么久，她的声音仍然充满了新鲜的惊奇，“他看着我说，‘我只是必须更加小心。’”
The conversation turned back to Noah, and I tried explaining our situation — the similarities, the differences — ending with a sideways apology for having a child with much more of a chance than hers ever did.
谈话转向诺亚，我试图解释我们的处境——相似之处和不同之处——最后以侧面的歉意结束了，因为我的孩子比她的孩子有更多的机会。
“But it’s your child,” she interrupted, “and when it’s your child, it’s the worst.”
“但这是你的孩子，”她打断道，“当这是你的孩子时，那就是最糟糕的了。”
Wobblingly, I asked Dortha what she felt after the ruling and subsequent settlement agreement with Dr. Theimer (about $120,000, which was placed in a fund for Lesli), explaining I’d been thinking about what might happen if we got a settlement.
我犹豫不决地问 Dortha，在裁决结果以及随后与 Theimer 博士达成和解协议（约 12 万美元，已存入 Lesli 的基金）后她有何感受，并解释说我一直在考虑如果我们达成和解会发生什么。
“It didn’t make her well,” she said.
“这并没有让她好起来，”她说。
It did not help her own pain.
这对她自己的痛苦没有帮助。
It helped her get out of debt.
这帮助她摆脱了债务。
It gave her some money for her daughter.
这给了她一些钱给她的女儿。
Dortha’s glad her case ended the way it did, but she’s not happy about the name the action ended up with: “I don’t like it!” she told me.
多莎很高兴她的案子以这样的方式结束，但她对行动最终的名字不满意：“我不喜欢它！”她告诉我。
“I just think it’s horrible.” If she could rename it, she’d do away with the words wrongful and birth in favor of something like “parental choice.” For whatever reason, the language, controversial as it is, doesn’t bother me.
“我只是觉得这太可怕了。”如果她可以重新命名，她会删除“错误”和“出生”等词，而代之以“父母选择”之类的词。不管出于什么原因，这种有争议的语言并不困扰我。
It’s clumsy and raw, and I do think it’s horrible — just like the circumstances.
它既笨拙又原始，而且我确实认为这很可怕——就像当时的情况一样。
Toward the end of our talk, Dortha gently helped me with a question, reframing it to let me know I could ask her about guilt.
在我们的谈话即将结束时，多莎温柔地帮我提出了一个问题，重新组织了这个问题，让我知道我可以问她有关内疚的问题。
She said she does feel guilty, sometimes.
她说，有时她确实感到内疚。
She’ll go back and think about what she might have done differently.
她会回去思考她可能会采取哪些不同的做法。
Her doctor was a general practitioner; maybe she should have seen a gynecologist.
她的医生是一名全科医生；也许她应该去看妇科医生。
She did call one — but he was too busy to see her, she said, in the voice of someone who’s told herself the same complicated, circular story many times over.
她确实给一个人打了电话，但他太忙了，没空见她，她的语气就像一个已经告诉自己很多次同样复杂、循环的故事的人。
Similar decisions I made when I was pregnant continue to haunt me.
我在怀孕时做出的类似决定仍然困扰着我。
A friend had recommended I see her midwife over the ones I chose; I didn’t take her advice.
一位朋友建议我去看她的助产士，而不是我选择的助产士。我没有采纳她的建议。
For my son’s sake, I wish I’d chosen differently — the last half of that sentence swiftly yanking away the first.
为了我儿子的缘故，我希望我当时做出了不同的选择——这句话的后半句很快就把前半句拉走了。
Dortha thinks it’s only natural for mothers like us to rove over the possibilities of what could have been, what we did or didn’t do.
多莎认为，对于像我们这样的母亲来说，探索可能发生的事情、我们做了什么或没有做什么的可能性是很自然的。
“It’s a life sentence,” she said simply, 47 years ahead of me in serving hers.
“这是无期徒刑，”她简单地说，比我早 47 年服刑。
When I first started writing about Noah , his treatments took 30 minutes in the morning, 30 more in the evening.
当我第一次开始写诺亚的时候，他的治疗早上需要 30 分钟，晚上需要 30 分钟。
That’s since changed.
从那以后情况发生了变化。
This summer, he tested positive for the bacteria Pseudomonas and was prescribed an additional treatment, the antibiotic Tobramycin, which takes 20 to 30 minutes to administer via a nebulizer, a drug-delivery device that diffuses liquid medication into a fine spray so it can be inhaled.
今年夏天，他的假单胞菌检测呈阳性，并接受了额外的治疗，即抗生素妥布霉素，通过雾化器给药需要 20 至 30 分钟，雾化器是一种药物输送装置，可将液体药物扩散成细小的喷雾，以便可以吸入。
When he sits in front of cartoons with a mask on, he’s inhaling the antibiotics that work to kill the bacteria.
当他戴着口罩坐在动画片前时，他正在吸入能够杀死细菌的抗生素。
But Pseudomonas is likely to return — it’s an “opportunistic infection” that, eventually, becomes immune to antibiotics.
但假单胞菌很可能会卷土重来——这是一种“机会性感染”，最终会对抗生素产生免疫力。
For cystic-fibrosis patients, it’s one of the factors associated with an earlier death.
对于囊性纤维化患者来说，这是与早期死亡相关的因素之一。
Lately, Noah’s favorite word is more .
最近，诺亚最喜欢的词是“更多”。
The meaning seems to blur at the edges — sometimes I can tell he wants more milk, other times he seems to mean something akin to “again.” But whatever he means, when he says the word, he stares off into the distance, repeating himself as his voice grows quieter and quieter, until it’s more of a plaintive murmur than a demand.
这个含义似乎有些模糊——有时我可以看出他想要更多牛奶，有时他的意思似乎类似于“再次”。但无论他的意思是什么，当他说出这个词时，他都会凝视远方，随着声音变得越来越小而重复自己的话，直到它更像是哀伤的低语而不是要求。
He’s a toddler, and between treatments, he’s a busy, capable little boy.
他是一个蹒跚学步的孩子，在两次治疗之间，他是一个忙碌、能干的小男孩。
He interacts with the world more and more each day, and he wants things from it.
他每天与世界的互动越来越多，他想要从中得到一些东西。
I’m afraid of what he might want from me someday, of the kinds of questions he’ll want answered.
我害怕有一天他可能想从我这里得到什么，害怕他想要回答的各种问题。
He’s not dumb: He’ll figure out that his disease should have been detected before he was born, not after.
他并不傻：他会发现他的疾病应该在他出生之前就被检测出来，而不是在出生之后。
The prenatal results should have been communicated to me by the midwives.
产前结果应该由助产士传达给我。
A genetic counselor should have explained that being a carrier doesn’t necessarily mean an unhealthy fetus.
遗传咨询师应该解释说，作为携带者并不一定意味着胎儿不健康。
She should have recommended that my husband be tested, just in case.
她应该建议我丈夫接受检查，以防万一。
She should have explained that in the U.S., one in 29 Caucasians carry a CF mutation.
她应该解释说，在美国，每 29 个白人中就有一个携带 CF 突变。
And even if Tag were also a carrier, a counselor should have told us, there was still a 75 percent chance of the fetus being fine.
即使塔格也是携带者，咨询师也应该告诉我们，胎儿仍然有 75% 的机会完好。
I would have had an amniocentesis or chorionic villus sampling to know for sure.
我会进行羊膜穿刺术或绒毛膜绒毛取样才能确定。
But none of those results would have been the ones we wanted, and we’d be up against the last should : I should have had an abortion.
但这些结果都不是我们想要的，而且我们将面临最后一个应该：我应该堕胎。
And that’s where my conviction crumples, because I don’t know how I’m supposed to tell Noah that someday.
这就是我的信念崩溃的地方，因为我不知道有一天我应该如何告诉诺亚。
It’s one thing to watch a loved one suffer.
看着所爱的人受苦是一回事。
It’s another to watch and know it’s your fault, even if only because of the way your body is made.
观察并知道这是你的错是另一回事，即使只是因为你的身体构造方式。
And it’s something almost beyond me to imagine, looking into Noah’s eyes and saying, I’m sorry I didn’t save you, from your own life.
这几乎超出了我的想象，我看着诺亚的眼睛说，很抱歉我没有把你从自己的生命中救出来。
It’s true that the outlook for a cystic-fibrosis patient has improved greatly, especially over the past 20 years.
确实，囊性纤维化患者的前景已经大大改善，尤其是在过去 20 年里。
In the 1950s, most children with cystic fibrosis died before getting the chance to attend kindergarten.
在 20 世纪 50 年代，大多数患有囊性纤维化的儿童在有机会上幼儿园之前就去世了。
This progress was something emphasized to us, over and over again, after Noah was diagnosed.
在诺亚被确诊后，我们一遍又一遍地强调这一进展。
We’ve got adult patients!
我们有成年患者！
our clinic kept saying.
我们诊所一直说。
It took me a little while to figure out why I was supposed to feel grateful to hear about them, these full-grown strangers whose disease I’d once known nothing about.
我花了一段时间才弄清楚为什么我应该对听到他们的消息感到感激，这些成年的陌生人我曾经对他们的疾病一无所知。
These days, adulthood is a big part of what I fear most for Noah — what that must feel like, to be 25 and not sure what 30 will look like, if you might see 40.
如今，成年期是我对诺亚最担心的一个重要部分——25 岁时，如果你可能会看到 40 岁，但不确定 30 岁会是什么样子，那一定是什么感觉。
Our clinic recently added a new member to its staff: a psychologist specially trained to focus on the mental health of cystic-fibrosis patients, who suffer from depression and anxiety at alarmingly high rates.
我们的诊所最近增加了一名新员工：一位接受过专门培训的心理学家，专注于囊性纤维化患者的心理健康，这些患者患有抑郁和焦虑的比例惊人。
Right now, Noah does not look ill in a way that would startle anyone.
现在，诺亚看起来并没有让人吃惊的病态。
No one knows he’s unwell unless we tell them.
除非我们告诉他们，否则没有人知道他身体不适。
A time will come, I know, when the decision to tell others about his disease will belong to him.
我知道，总有一天，将他的疾病告诉别人的决定将属于他。
Young adults with CF sometimes discuss this in the context of dating, how and at what point in a new relationship to explain what I’ve heard described as a “long-term terminal” disease.
患有CF的年轻人有时会在约会的背景下讨论这个问题，如何以及在什么时候建立新的关系来解释我所听到的“长期绝症”。
When we moved forward with our lawyer, I first pictured the money we might obtain in a settlement like the crassest of apologies.
当我们与律师取得进展时，我首先想到的是我们在和解中可能获得的金钱，就像最粗鲁的道歉一样。
I could give it to young-adult Noah if his health seemed to be taking a turn for the worse, and he could use it to travel the world and see places I’ve never been, in a glamorous rush to fill his shortened life.
如果年轻的诺亚的健康状况似乎每况愈下，我可以把它送给他，他可以用它环游世界，看看我从未去过的地方，以一种迷人的方式来填补他短暂的生命。
But this is a silly thought — he’d almost certainly be too sick to travel.
但这是一个愚蠢的想法——他几乎肯定会病得太重而无法旅行。
And we need that money for his medical expenses.
我们需要这笔钱来支付他的医疗费用。
Recently, the FDA approved Noah’s particular genetic mutations for treatment with a “miracle” cystic-fibrosis drug called Kalydeco — the first drug to fight the disease’s underlying cause.
最近，FDA 批准了诺亚的特殊基因突变可以用一种名为 Kalydeco 的“神奇”囊性纤维化药物进行治疗，这是第一种对抗该疾病根本原因的药物。
It’s a stunning change, one that could potentially add years to his life.
这是一个惊人的变化，可能会延长他的寿命。
The news does not come without complications — Kalydeco costs about $300,000 a year.
这个消息的到来并非一帆风顺——Kalydeco 每年的费用约为 30 万美元。
If everything stays the same for our family, with employment and health-care politics, insurance will pay for most of its cost.
如果我们家庭的一切都保持不变，就业和医疗保健政治，保险将支付大部分费用。
But the enormity of that burden makes me scared for us, for Noah.
但这种负担的巨大让我为我们、为诺亚感到害怕。
It’s such a looming need.
这是一个迫在眉睫的需求。
And not even the millions and millions of dollars we’d need to purchase this drug outright can buy what I truly want for my son: the chance to look ahead and see the same bright mystery that healthy young people see, brimming in their perfect idiot youth.
即使是我们需要直接购买这种药物的数百万美元也买不到我真正想要给我儿子的东西：有机会展望未来，看到健康年轻人所看到的同样明亮的神秘，充满了他们完美的白痴青春。
Of the bond between motherhood and mortality, the novelist Samantha Hunt has written, “No one has ever looked at my kids and said, ‘Wow.
关于母性与死亡之间的联系，小说家萨曼莎·亨特写道：“没有人看着我的孩子说，‘哇。
You made three deaths.
你造成了三人死亡。
You must really understand life.’ ” When I made Noah, I made a particularly brutal death, one that starts in his cells, which don’t work quite right.
你必须真正了解生命。’”当我制作诺亚时，我进行了一次特别残酷的死亡，从他的细胞开始，这种死亡不太正常。
I don’t know how to be sorry, only that I am.
我不知道如何表达歉意，只有我是这样。
If I had received my test results, and gotten pregnant using IVF to ensure a healthy embryo, would I still have made Noah, this exact son, only without his disease?
如果我收到测试结果，并通过试管受精怀孕以确保健康的胚胎，我还会生下诺亚，这个确切的儿子，只是没有他的疾病吗？
That possibility is agonizing to think of — all the years of life I can’t give him.
想到这种可能性就令人痛苦——我不能给他生命的所有岁月。
I love my child just the way he is is a sentiment often put forth, fiercely, by the parents of sick or disabled kids.
“我爱我的孩子本来的样子”，这是生病或残疾孩子的父母经常强烈表达的一种情感。
It’s not hard to understand the intention — every parent wants to make it clear that no challenge renders their love conditional.
其意图并不难理解——每个父母都想明确表示，任何挑战都不会让他们的爱成为有条件的。
But given the choice, if one existed, I would have Noah another way: healthy.
但如果可以选择的话，如果有的话，我会给诺亚另一种选择：健康。
Wrongful birth doesn’t grant anyone that choice; like Dortha said, no legal outcome can ever make your child well.
错误出生并不赋予任何人这样的选择；正如 Dortha 所说，任何法律结果都不可能让您的孩子康复。
Having to put this kind of pain into words is, to me, the hardest part of wrongful birth.
对我来说，必须用语言表达这种痛苦是错误出生中最困难的部分。
To have to specify what would make me terminate a pregnancy, to imagine my life today without a toddler.
必须具体说明什么会让我终止妊娠，想象我今天没有孩子的生活。
There’s no escape from knowing that the opportunity for mercy quietly slipped by and that something as idiotic as a clerical error is responsible.
我们不可避免地知道，宽恕的机会悄悄溜走了，而责任是像文书错误这样愚蠢的事情造成的。
But the most consuming, language-defying pain is just the other side of the most overwhelming joy.
但最强烈的、无法用语言表达的痛苦只是最压倒性的快乐的另一面。
There are no words for the feeling of walking down the street with the person I love most, no words to describe why I wanted to have a child in the first place.
无法用言语来形容和我最爱的人一起走在街上的感觉，也无法用言语来形容我当初为什么想要一个孩子。
After all this pain and humiliation and anger boiled down to records and money and who did what, the love I have for my son feels like the one thing that can’t be taken from me.
在所有这些痛苦、羞辱和愤怒都归结为记录和金钱以及谁做了什么之后，我对儿子的爱感觉就像是一件无法从我身上夺走的东西。
It’s what I know more than anything in this world.
这是我比这个世界上任何事情都更了解的事情。
*This article appears in the November 27, 2017, issue of New York Magazine.
*本文发表于 2017 年 11 月 27 日的《纽约杂志》。