一個沒有大腦只有腦干的男孩活了12歲
TIL a boy lived for 12 years with only the brain stem, a condition called anencephaly that usually kills before childbirth.
譯文簡介
慎入……
正文翻譯
An x-ray of Trevor's skull shows the little boy's skull, with fluid filling the cavities where the cerebral hemispheres of his brain should be. (KSLA File, 2003)
SHREVEPORT, LA (KSLA) - An ArkLaTex child born without a brain and defied all odds passed away peacefully in his sleep Monday.
Trevor Judge Waltrip was born on Christmas Eve 2001, with just a brain stem and hydranencephaly
. It's a rare condition in which the brain's cerebral hemispheres are absent, replaced by sacs filled with cerebro-spinal fluid. The brain stem allowed Trevor to breathe, respond to some stimulus, and maintain a heartbeat. In 2003, his mother Elizabeth told KSLA News 12 that "He's so alx and hates to be alone. He'll sense that, too."
Still, Trevor was blind and unable to verbally communicate.
特雷弗的頭部X光片顯示，這個小男孩的顱骨中，他的顱腔沒有大腦半球，液體充滿了空腔。
這個叫特雷弗的孩子，出生時沒有大腦——挑戰(zhàn)了幾乎不可能，他周一在睡夢中平靜地去世了。
特雷弗·賈奇·沃特里普出生于2001年的平安夜，只有腦干。
積水性無腦，這是一種罕見的癥狀，大腦半球缺失，取而代之的是充滿腦脊液的囊。腦干讓特雷弗能夠呼吸，對某些刺激做出反應，并保持心跳。2003年，他的母親伊麗莎白告訴KSLA新聞12頻道，“他非常警覺，討厭獨處——他也能感覺到?！?br /> 但是，特雷弗雙目失明，無法用語言交流。
Doctors were unsure if Trevor would make it 12 weeks. At 17 months, his physician Larry Daniels said that he was very unique to have survived that long, considering babies born with this condition generally don't live to birth."
There's no cure or treatment for hydranencephaly.
Trevor lived for 12 years, with the help of a feeding tube and therapists who stimulated his muscles and joints. His mother says she knows his story touched the hearts of many across the region. When we checked in with the Waltrip family again in 2005, his mother said he was doing well, gaining weight and had 15 teeth, "and he does bite, so he does know what he's doing."
Elizabeth Waltrip also found a support group for parents of babies like Trevor. "Just to know about other babies out there like this because I thought I was the only one. It's really ...I feel much better."
醫(yī)生當時不確定特雷弗是否能活過12周。17個月大時，他的醫(yī)生拉里·丹尼爾斯說，他能存活這么久極不尋?！驗榛歼@種疾病的嬰兒通常活不到出生。
目前還沒有治愈或治療積水性無腦畸形的辦法。
在喂食管和治療師的幫助下，特雷弗活了12年，他的肌肉和關節(jié)得到了刺激。他的母親說，她知道他的故事感動了當?shù)卦S多人。2005年，當我們回訪沃爾特里普一家時，他的母親說他很好，體重增加了，有15顆牙齒，“而且他會咬人，所以他知道自己在做什么?！?br /> 伊麗莎白還找到了一個有類似孩子的家長群。“我只是想知道其他萊斯孩子，因為我曾以為我是唯一的一個，這真的……我感覺好多了?！?/b>
There's no cure or treatment for hydranencephaly.
Trevor lived for 12 years, with the help of a feeding tube and therapists who stimulated his muscles and joints. His mother says she knows his story touched the hearts of many across the region. When we checked in with the Waltrip family again in 2005, his mother said he was doing well, gaining weight and had 15 teeth, "and he does bite, so he does know what he's doing."
Elizabeth Waltrip also found a support group for parents of babies like Trevor. "Just to know about other babies out there like this because I thought I was the only one. It's really ...I feel much better."
醫(yī)生當時不確定特雷弗是否能活過12周。17個月大時，他的醫(yī)生拉里·丹尼爾斯說，他能存活這么久極不尋?！驗榛歼@種疾病的嬰兒通常活不到出生。
目前還沒有治愈或治療積水性無腦畸形的辦法。
在喂食管和治療師的幫助下，特雷弗活了12年，他的肌肉和關節(jié)得到了刺激。他的母親說，她知道他的故事感動了當?shù)卦S多人。2005年，當我們回訪沃爾特里普一家時，他的母親說他很好，體重增加了，有15顆牙齒，“而且他會咬人，所以他知道自己在做什么?！?br /> 伊麗莎白還找到了一個有類似孩子的家長群。“我只是想知道其他萊斯孩子，因為我曾以為我是唯一的一個，這真的……我感覺好多了?！?/b>
Knowing what the odds are against babies like Trevor, Elizabeth took things one day at a time. "I look at it like he's here for a reason," she said in 2005, "and I thank God everyday for it."
Now that he has passed away, his family is asking for help to cover funeral costs. Donations can be made to any Chase Bank under the "Trevor Judge Waltrip Donation Account."
Arrangements have been made, with funeral services being held on Saturday, August 30 at 2:30 p.m. at Rose-Neath's Southside Chapel, 2500 Southside Drive.
Visitation will be on Friday, August 29 from 5-7 p.m., also at Rose-Neath Southside Chapel.
伊麗莎白知道像特雷弗這樣的嬰兒的概率有多渺小，所以她要過好每一天?！拔矣X得他來到這世上是有緣由的，”她在2005年說，“為此我每天都感謝上帝。”
現(xiàn)在他已經(jīng)去世了，他的家人為葬禮費用尋求捐助……
Now that he has passed away, his family is asking for help to cover funeral costs. Donations can be made to any Chase Bank under the "Trevor Judge Waltrip Donation Account."
Arrangements have been made, with funeral services being held on Saturday, August 30 at 2:30 p.m. at Rose-Neath's Southside Chapel, 2500 Southside Drive.
Visitation will be on Friday, August 29 from 5-7 p.m., also at Rose-Neath Southside Chapel.
伊麗莎白知道像特雷弗這樣的嬰兒的概率有多渺小，所以她要過好每一天?！拔矣X得他來到這世上是有緣由的，”她在2005年說，“為此我每天都感謝上帝。”
現(xiàn)在他已經(jīng)去世了，他的家人為葬禮費用尋求捐助……
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可憐的家伙。
personally i feel like it's cruel to keep him alive like this. or rather, it was cruel, since he died. i hope he didn't live with pain.
我個人覺得讓他這樣活著實在太殘忍了。我希望他活著時沒有痛苦。
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If it's just the brainstem he didn't feel anything. It's only in charge of auto functions. There wasn't anybody "there"
如果只有腦干，他不會有任何感覺。腦干只負責自動功能，軀體中不存在“人”。
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Yeah I felt bad when the mom said "he knows what he's doing", when referring to him biting.
是的，當他媽媽提到他咬人并說“他知道自己在做什么”的時候，我感到很難過。
Denial is a strong thing
"Fortunately", if it truly was only a brain stem, he was never a 'person'
Just a husk kept alive by modern science...
“拒絕接受”現(xiàn)實是一種非常堅定的感情。
“幸運的是”，如果真的只有一個腦干，他就不是一個“人” 只是一個被現(xiàn)代科學維持著生命的軀殼……
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"I look at it like he's here for a reason," she said in 2005, "and I thank God everyday for it."
This is just incredibly sad to me. The desire for there to be "reasons" for these things is just something I can't wrap my head around. 12 long years of taking care of a husk; I just can't fathom it.
“我覺得他來到這世上是有緣由的，”她在2005年說，“為此我每天都感謝上帝。”
這讓我異常難受。像這樣的事情，人們總是渴望“緣由”，這是我想不通的。我也無法理解12年的悉心照料。
I understand your feeling but it's the mom trying to humanize the child. There was nothing there, she just couldn't let go. Words like that are meant to pull sympathy to her cause. I'm sure she rationalized the child as just special needs. But yea. It's literally nothing. Sry if that's a little cold..
我理解你的感受，但這是這位母親想“人格化”這個孩子。她的孩子是不存在的，她只是放不下而已。像那樣的話是為了引起人們對她的同情。我肯定她給孩子找的借口是有特殊需要。但是沒錯，這毫無意義——抱歉，如果這有些冷血。
I think noone can understand unless you are in that situation as a parent
我想沒有人能理解，除非你作為父母處于那種情況
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WolfgangVolos
As a parent of a child who has a similar condition, it is the worst possible thing. We wanted to refuse medical treatment so his disease would end his "life" if you can even call it that. The hospital illegally refused us our medical decision making power and gave him life saving surgery. Now he's a lump of flesh that cannot see or hear, doesn't respond to pain stimulus, cannot feed himself, can not move under his own power, obviously will never interact with another human at any kind of level and at a certain point won't even breathe on his own without machine help. Giving him up for adoption was literally our only sane option left after they forced him to "live". When we found out our third pregnancy had the same condition we aborted without any delay or remorse.
作為孩子有類似情況的父母，這可能是最糟糕的事情。當時，我們想要放棄治療，這樣他的病況就會結束他的“生命”——如果你還可以稱之為生命的話。醫(yī)院非法拒絕了我們的醫(yī)療決定權，違背我們意愿做手術救了他。現(xiàn)在他是一塊肉，看不到、聽不到，不應對疼痛刺激，不能自己吃飯，甚至沒能力移動，甚至離了呼吸機都活不下去。在他們強迫他“活著”之后，把他送去領養(yǎng)是我們唯一明智的選擇。當我們發(fā)現(xiàn)第三次懷孕有同樣情況，我們沒有任何猶豫或悔恨就選擇了流產(chǎn)。
We talked about what we would do if certain things like infertility, serious disability, moderate disability, and other things could happen when trying to have kids. Our first is deaf on one side and until he was about a year we didn't know if he'd be able to speak. That was something we could handle. Caring for a body without a human mind and without, in our view, a human soul? That would have destroyed us emotionally, crippled us financially, and our first kid would have suffered. We have two healthy children now, neither carry the gene for the disease, and we're fixed so no more pregnancies. It was rough but we had each other and a plan so we knew we'd make it.
我們想要孩子的時候，曾討論過不孕不育、孩子嚴重殘疾、中度殘疾，以及其他可能的情況發(fā)生時我們會怎么做。
我們的第一個孩子一側失聰，直到一歲我們還不知道他會不會說話——這些我們都應付得來。然而照顧一個沒有人類思想、沒有靈魂的肉體？那會在情感上摧毀我們，在經(jīng)濟上讓我們陷入困境，我們的第一個孩子也會受到連累。我們現(xiàn)在有兩個健康的孩子，都沒有攜帶這種疾病的基因，而且我們已經(jīng)治好了，所以不會再懷上這種孩子了。這很難，但我們還有彼此，有一個計劃，所以我們知道我們會渡過難關的。
What can you do though? He was born, not like you can just kill someone.
但你又能做什么呢？他出生了，不是說你可以隨便殺人。
So as a dad I'm not going to say when it comes to me kids I'm going to be rational. So I'm never going to judge another parent but I'm thinking about what you said.
Basically, don't hook him up to machines, he's got no chance. Physiotherapy, specialized machines, hospital space, nurses, Dr's this was a multi million dollar cost which is always the dark side of these conversations but exist non the less. But again as a parent if you can you likely do.
作為一名父親，如果是我的孩子時，我不會說我會保持理性。所以我永遠不會去評判別的家長，但我在思考你說的話。
說到底，別把他綁在機器上，他根本沒有機會。在這些故事的背后，是物理治療、專業(yè)機器、醫(yī)院環(huán)境、護士、醫(yī)生，是數(shù)百萬美元的花費，這是必然存在的黑暗面——但作為父母，如果你可以做到，你大概率也會去做。
*edit wife has a tube in her throat to breath and feeds with a gtube (insert to feed directly into stomach) so she needed access to oxygen and fed pumps plus no one knew what would happen changing a gtube at 8 months which was it's own adventure
另一方面，科學也從這些罕見案例中受益。你不能令某個人患上這種癥狀，但如果他們在你的醫(yī)院，你就會認真研究一切。我的個人經(jīng)歷是，我妻子在生孩子前做了氣管手術。據(jù)我們所知，她是我國第一個，也是世界上第三個以這種狀況分娩的。我們是加拿大人，所以除了停車費，其他費用都被覆蓋了，我們享受到了世界一流醫(yī)療待遇，因為他們想了解很多東西，出于研究目的。總的來說很正常，但有段時間有4個醫(yī)生和16個護士在房間里檢測各種指標。
*編輯 我妻子的喉嚨里有一根管子用來呼吸，通過胃造瘺口喂食，而且沒人知道懷孕8個月的時候更換一個胃造瘺口會發(fā)生什么……
As dark as it sounds, scientifically speaking, he could have been an ideal candidate for an attempt at a brain transplant (to see if it's possible and what would happen). It would take a pretty special set of circumstances to establish a donor, but the results would be interesting, nonetheless.
雖然聽起來很恐怖，但從科學的角度來說，他本可以成為大腦移植試驗的理想人選(看看這是否可行，會發(fā)生什么)。要確定一個捐贈人，需要一套非常特殊的條件，但不管怎樣，結果會很有趣。
Brain transplants are still a future dream, since we haven't (as far as I know) tried it on mice either. Even if you could get past all the legal and ethical red tape, there's the issue that, biologically speaking, a brain transplant wouldn't be possible (at least not with modern tech and our level of knowledge about the brain). Head transplants, however are entirely possible and have been done before, but that obviously isn't helpful in this case.
I'd bet my money on manipulating stem cells placed against the brain stem to develop into neurological tissue. Still tons of red tape, but much more doable. Biologically speaking, it still wouldn't work the way we want it to, but it would further advance our knowledge on stem cells and how complex organs like the brain are formed.
大腦移植仍然是未來夢想，因為(據(jù)我所知)我們還沒有在老鼠上做過實驗。即使你能通過所有的法律和道德上的繁雜手續(xù)，從生物學上講，大腦移植是不可能的(至少以現(xiàn)代科技和我們對大腦的認知是不可能的)。然而，頭部移植是完全有可能的，以前也有人做過，但顯然對這個案例沒用。
我更愿意下賭注給操縱那些與腦干相對的干細胞，讓它們發(fā)育成神經(jīng)組織。雖然仍有大量的手續(xù)要克服，但更加可行。從生物學上講，雖然不會如我們希望的那樣起效，但它將進一步推進我們對干細胞以及大腦等復雜器官形成機制的理解。
I'm normally first in line to decry bioethicists' caution as pathologically intense to the point of working far greater harm by needlessly delaying the progress of medicine, but in this case... yikes, let's get it working on animal models first.
我通常極力反對那些生物倫理學家的警告，他們的擔憂近乎病態(tài)，造成對醫(yī)學進展不必要的拖延，從而造成了更大的傷害，但在這個案例中……哎呀，讓我們先把它用在動物模型上。
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There’s a legitimate argument to be made that he wasn’t a person. He was living, sure, but there was no personality or conscious thought going on there. Only basic functioning not unlike a plant.
It sounds awful but I mean really think about it. This was not a person, this was a living effigy of a child that was lost in development. To me it seems disrespectful to have the husk of the child live on for no real reason other than the parents’ inability to let go.
有一個合理的理由可以證明他并非一個人。當然，他活著，但沒有人格或有意識的思維。只有基本的功能，與植物不完全相同罷了。
這聽起來很糟糕，但我的意思是認真想想。這不是一個人，這是一個在成長過程中迷失的孩子的“活雕像”。在我看來，除了父母無法放手這條理由，讓這個孩子的軀殼毫無意義地活下去是對生命的不尊重。
This condition is something that would be revealed in the 20 week ultrasound that all mothers who have prenatal care at all receive. Most people at that point choose to terminate for medical reasons, although a few carry on expecting the child to die at birth.
這種情況會在所有接受產(chǎn)前護理的母親接受的20周超聲波檢查中被發(fā)現(xiàn)。大多數(shù)人出于醫(yī)療原因選擇終止妊娠，盡管也有少數(shù)人繼續(xù)妊娠，等著孩子在出生時死亡。
Honestly they should have aborted this pregnancy. But one they were born it became more complicated.
老實說，他們應該墮胎的。但一旦他們出生，事情變得更復雜了。
Crazy to think about it, there was no consciousness just a body responding to stimuli
想想就瘋狂，沒有意識，只有一個能對刺激做出反應的肉體。
While morbid in this situation, it's actually really cool that certain actions are hardwired into our DNA without ever needing to be taught. Like how babies reflexively know to hold their breath when submerged in water, or how if a baby grabs your fingers you can lift them up and they'll just hang on indefinitely. (I'm mostly using examples of 3-6 month old babies, if I'm remembering the studies correctly)
雖然這個案例非常恐怖，但其實很酷的是，某些行為無需人教就已經(jīng)根植于我們的DNA中。比如嬰兒如何反射性地知道在水中屏住呼吸，比如如果嬰兒抓住你的手指，你可以把他們提起來，他們會下意識地掛在你的受傷。(如果我沒記錯的話，我主要舉的是3-6個月大嬰兒的例子)
originalcommentator
My thoughts exactly, it literally has no brain to have any higher level functioning or even any consciousness. I wouldn't even call that a human besides genetically. It needed a feeding tube, was blind, couldn't hear, and could legally be considered brain dead. When that sort of thing happens to 30-year-olds they just pull the plug. But it happens to a baby and you keep it alive for 12 years? And it's seen as an inspiration? There's no hope of recovery, as it never had a brain in the first place. It was 12 years of cruelty.
正是我的想法，它實際上沒有任何更高層次的大腦功能，甚至沒有任何意識。除了基因，我都不會把它叫做人類。它需要一個喂食管，而且是瞎子、聾子，在法律上可以被認為是腦死亡。
當這種事情發(fā)生在30歲的人身上時，他們就會拔掉管子。但這發(fā)生在一個嬰兒身上而你卻讓他活了12年？而且還被視為一種鼓舞？根本沒有痊愈的希望，因為它一開始就沒有大腦。這是12年的殘酷。
To add, it seemed that the family had other children to take care of. And to take money and resources that could have gone to those other kids and put it towards something that has no future, it's downright mean.
此外，這家人似乎還有其他孩子要照顧。把本可以花在其他孩子身上的錢和資源用在沒有未來的事情上，這太卑鄙了。
After reading the article they’re also looking for donations to cover funeral costs.
Heartless as it may sound, keeping him in a sort of suspended animation for 12 years seems wholly unethical and it isn’t other peoples responsibility to provide for his funeral service.
讀完這篇文章后，他們還尋找捐款來支付葬禮費用。
聽起來可能很無情，但讓他假死12年似乎完全不道德，而且為他提供葬禮服務也并非別人的責任。
from my experience, humans are just completely irrational and chemically influenced by evolution sometimes. this is a prime example. there's literally no reason to keep that child alive but they did so anyway due to attachment or 'morals' or what have you. just makes no sense but they did it anyway. humans just do things sometimes
after reading the article im more peeved that they 'thanked god for him surviving so long' and that his story apparently 'touched some people'
'god' literally robbed this being all consciousness and possibility of life, and is literally just a collection of nerves responding to stimuli. how do you believe a god had anything to do with this? if you ask me, it's just more anecdotal evidence to solidify my atheism, because it's quite apparent there is no god that would 'allow' this to happen, and more apparent that the parents sentimentally latched onto and applied human characteristics to what is by all means a living corpse
以我的經(jīng)驗，有的時候，人類是完全不理性的，會受到進化的化學影響——這是一個典型的例子。沒有任何理由讓孩子活著，但他們還是這么做了，因為依戀或“道德”之類的。毫無道理，但他們這么做了。有時候，人就是那樣不管不顧。
讀了這篇文章后，我更生氣了，他們“感謝上帝讓他活了這么久”，而且他的故事顯然“感動了一些人”。
毫不夸張地說，他們口中的“上帝”剝奪了這個生物所有的意識和生命的可能——可以說它只是對刺激做出反應的神經(jīng)集合。你怎么會相信這是上帝的影響？如果你問我，這只給了我更多證據(jù)來鞏固我的無神論，因為很明顯沒有神會允許這樣的事情發(fā)生，更明顯的是，這對父母對一具行尸走肉依依不舍、試圖賦予其人格特質(zhì)。
As a parent can you even let a child like this sort of self euthanize without being in pretty big trouble with authorities?
作為父母，你能讓孩子這樣自我安樂死而不被當局找麻煩嗎？
Wouldn't it be akin to someone in a vegetative state and their next of kin pull the plug?Not vested one way or the either, just postulating
這難道不就相當于一個人處于植物人狀態(tài)而他的親人拔掉了管子嗎？
That’s morbid but I agree with every word you wrote. Someone survives cancer it’s always “thank God!” But if they die of cancer don’t you dare blame the big man!
很病態(tài)，但我同意你寫的每一個字。有誰能幸存于癌癥中，人們總是說"感謝上帝"，但如果他們死于癌癥，你卻不敢怪那個上帝!
“First of all, I’d like to blame God for making us lose the football game today and for ruining my career as a coach.”
“首先，我要怪上帝讓我們輸了今天的足球賽，毀了我的教練生涯。”
The best part is when two Catholic schools play each other, and one of the players/coaches on the winning team afterward will say "I just want to thank God for helping us get this win" or something to that effect. And I'm like, "...but you're both religious schools......"
最精彩的部分是當兩所天主教學校比賽時，獲勝球隊的某名球員或教練會說:“我只是想感謝上帝幫助我們贏得這場比賽”之類的。我就會想“……但你們兩個都是宗教學校……"
Obviously the team that prays harder wins
很明顯，誰越使勁兒祈禱，誰就會贏。
Is a bloke that was never woke even a bloke? This thing just spins me out. I can't imagine keeping such a being around my house. And I can't imagine it matters at all to him without a brain.
一個從未醒來的人還算人嗎？這東西都把我繞暈了。我無法想象把這樣一個人留在我的房間。我無法想象對一個沒有大腦的人，活不活有什么意義
Wait until you find out about plants
直到你發(fā)現(xiàn)了你房間里的植物、
nope-nails
I was pregnant with a fetus with anencephaly. I feel heartless thinking this, but, all this article did was reassure me that ending my pregnancy was the right choice.
我曾懷了一個無腦畸形的胎兒。雖然感覺很無情，但這篇文章唯一做到的就是讓我確信終止妊娠是正確的選擇。
You were not heartless. You could do nothing more to help that child, but you made the decision that was best for the members of your family whom you could protect, yourself included.
你不無情。你幫不了那孩子，你做了對你還有你的家人最好的決定——他們才是你可以保護的人。
Certainly not heartless, if anything, you were even more compassionate. Making a difficult choice, that plenty of people would judge you for, for the benefit of someone who would never actually live. Never experience joy, or friendship, or even his own mother's love. You saved your child from living in a shell. Existing but not living.
當然不無情，甚至可以說你更有同情心。做出了一個艱難的選擇，很多人會對你指指點點，為了一個永遠不會真正活過的人。永遠體驗體驗不到歡樂、友誼，甚至自己母親的愛。你把你的孩子從軀體里解救了出來。存在但不是生活。
What a terrible existence.
多么可怕的存在。
He had an older sister that isn't pictured that I went to school with. About 10 years ago we had a discussion in philosophy about what is a human and these babies were brought up. The teacher mentioned that there are only 200 born a year and most don't survive their first night. She raised her hand, told us about his condition then asked to be excused for the remainder of the discussion.
It was really sad but one of the few memories I have of an in class discussion.
他有個姐姐，和我一個學校。大約十年前，我們在哲學課上討論什么是人類，過程中提到這些嬰兒。老師說，每年全世界只有200個這樣的孩子出生，大多數(shù)都活不過第一個晚上。他的姐姐舉起了手，告訴了我們他的情況，然后請求不參與接下來的討論。這真的很令人難過，也是我對這堂課為數(shù)不多的記憶之
How dare they do that to a kid, let him live with that.
他們怎么敢這樣對待一個孩子，讓他這樣活著。
My first born son had that condition which have different degrees of severity. My son had the most severe kind, we were told that if he made it to full term he would choke to death right after he was born. We had been trying to conceive for years and had a couple of losses beforehand but we couldn't bear the thought of him suffering while he died. At 25 weeks we made the toughest decision of our lives and had the doctor stop his heart. The doctor informed us that it would be just like him going to sleep, no suffering just peace for him. I gave birth to him the next morning and my husband, myself and our parents got to hold him, kiss him, hug him and say goodbye. I would have traded my own life for him to be alive and healthy and still would to this day.
This is the first time I've ever seen any kind of article about a child living that long with a severe case. My heart is pounding so hard right now because when something so rare occurs, you feel like you're all alone in the utter devastation of the situation. My heart goes out to the family of that sweet boy and I'm so proud of them for making people aware of this awful condition. I wish I had had the courage to talk about it.
我的第一個兒子也是這種情況，但他是最嚴重的程度，我們被告知，如果他能足月出生，他會在出生后立馬窒息而死。這么多年我們一直想要孩子，而且之前也經(jīng)歷了幾次流產(chǎn)，但我們無法忍受他死時的痛苦。25周的時候，我們做出了人生中最艱難的決定，讓醫(yī)生終止了他的心跳。醫(yī)生告訴我們他就像睡著了一樣，沒有痛苦，只有平靜。第二天早上我生下了他，我的丈夫，我自己和我們的父母抱著他，親吻他，擁抱他，和他說再見。直到今天，我也愿意用我自己的生命來換取他健康得活著。
這是我第一次看到有文章說一個這樣的孩子活了那么久。我的心現(xiàn)在跳得很厲害，因為當你遭受罕見的變故時，你會感覺舉目望去孤身一人。我的心與那個可愛男孩的家人同在。他們用自己的故事讓人們了解到這種嚴重病癥，我為他們感到驕傲，我希望我也有勇氣這樣談論它。