英国绝症患儿查理•加德引全球热议

近日，英国绝症患儿查理•加德引起了包括美国总统特朗普与教皇方济各在内的多方关注。11个月大的查理•加德患有无法治愈的基因疾病，父母希望带他前往美国接受“实验性”治疗。但医院专家认为这只会令他更痛苦，并决定拔掉查理的呼吸机。

Eleven-month-old Charlie Gard has irreversible brain damage and cannot see, hear, move or even cry, doctors say. Yet this terminally ill British baby is at the middle of a global ethical argument over whether he should live or die, an argument that has attracted the attention of Pope Francis and US President Donald Trump.
医生表示，11个月大的查理•加德因患有无法治愈的脑损伤，失去了视力和听力，无法活动，甚至不会哭。这名身患绝症的英国宝宝的生死引发了全球关于伦理问题的争论，并引起了教皇方济各和美国总统特朗普的关注。

医院为何主张结束他的生命？

Charlie has an extremely rare degenerative condition called mitochondrial DNA depletion syndrome. His doctors in Britain want to take him off life support, arguing that he has no hope of surviving without assistance and that he should be allowed to die in dignity. But Charlie's parents, Chris Gard and Connie Yates, want the hospital to release their baby into their custody so they can take him to the United States for an experimental treatment.
小查理患有罕见的退行性疾病，也就是线粒体DNA缺失综合征。英国的主治医生主张撤掉查理的呼吸机，并称查理没有呼吸机就无法存活，他有权体面地离开人世。而小查理的父母克里斯•加德和康妮•伊茨却希望医院把小查理送还他们，他们会带孩子到美国进行实验性治疗。

查理是世界上仅有的16个患有线粒体缺失综合征的患者之一，这种病症会引起渐进性的肌肉无力和大脑损伤。现在查理已经受到了不可逆转的脑损伤，不能自主呼吸，失去了视力和听力，无法移动、哭泣或者吞咽。目前医学上没有任何办法进行有效治疗。8个月来，查理一直在医院的重症监护室里接受治疗，在呼吸机的帮助下维持生命。

患儿生命应由谁做主？

查理一家的遭遇重新唤起了关于患儿生命应由谁做主的讨论。

The case has resurfaced a decades-old debate over euthanasia and the use of life support, issues that have been fought in most corners of the world and that have often seen medical and religious arguments collide.
数十年间，世界各地关于安乐死和呼吸机的争论声就一直没有停止过，还时常伴随着关于医疗和宗教问题的讨论。如今，这项争议再次引发关注。

There is some legal uncertainty, too: Under British law, parental responsibility includes the right to give consent for medical treatment, according to the British Medical Association. However, parental rights are not absolute, and in cases in which doctors and parents disagree, the courts may exercise objective judgment in a child's best interest.
法律上的不确定性也导致了此案饱受争议。英国医学会表示，英国法律规定父母有权同意孩子进行药物治疗。然而父母的权利不是绝对的，若医生和父母意见存在分歧，法院可以依据患儿的利益来做出客观的裁决。

根据英国法律，如果父母和医生对孩子的治疗意见有分歧，法庭可以出面干涉，以保护患儿的权益。例如，有时父母的宗教信仰不允许孩子接受输血。

Gard and Yates lost their appeal to the European Court of Human Rights in France, which ruled June 27 that the hospital could discontinue Charlie's life support. They had already lost an appeal to the UK Supreme Court.
位于法国的欧洲人权法院判定加德和伊茨败诉，并在6月27日裁决允许医院撤掉查理的呼吸机。此前，英国最高法院也驳回了他们的上诉。

Now, the date Charlie's life support will be switched off appears to be up in the air, as the hospital is allowing the parents to spend more time with their child.
目前，医院给了查理的父母更多的时间与孩子道别，因此呼吸机被撤时间尚未确定。

查理的父母指责医院不让他们将身患绝症的宝宝带回家，让他在家里度过最后的时光。

“我们想让小查理回家。”加德的父亲说：“我们想在家给他洗澡，让他舒服地躺在沙发上，想把他放在他从没睡过的小床上，但是他们却不同意我们最后的请求。”

特朗普和教皇表达声援

英国最高法院的判决在民间也曾掀起轩然大波，有超过11万人签名请愿，请求首相能够出面帮助解决这个问题。

On Wednesday, British Prime Minister Theresa May expressed her sympathy for the baby's parents, saying she understood why they would want to explore all options for their child. But she also defended the hospital, saying that it would consider any offers on new information that would benefit the baby.
英国首相特蕾莎•梅周三对查理的父母表示同情，并表示她理解他们愿意为救孩子穷尽一切的举动。但同时，她也赞同医院的做法，称医院会考虑一切对查理有利的有关最新消息的提议。

"I also know that no doctor wants to be placed in the terrible position where they have to make such heartbreaking decisions," she said.
她说道：“被迫做出如此令人痛心的决定——我知道没有哪位医生愿意面临这样可怕的境地。”

The case of Charlie Gard has also captured the attention of US President Trump, who on Monday offered US support for the baby.
查理一案同样引发了美国总统特朗普的关注，他在周一代表美国向查理表达了支持。

"If we can help little #CharlieGard, as per our friends in the UK and the Pope, we would be delighted to do so," he wrote on Twitter.
特朗普在推特上发文说：“如果我们能够像英国的朋友和教皇一样帮助查理•加德，我们愿意这样做。”

查理的妈妈伊茨给特朗普的推特回复说，“儿子都没放弃，我们怎么能放弃！”

就在特朗普提出帮助的几个小时之前，教皇方济各说，查理的父母应该被允许陪伴和治疗孩子直到最后。教皇方济各发出推特消息说：“捍卫人的生命权是上帝赋予所有人的爱的责任。”

Yates said in a statement that she was taking support from Trump and the Pope seriously.
伊茨在声明中表示她在认真考虑特朗普和教皇提出的帮助。

"The support from the Pope and the President has given us hope. They are traditional men who believe in the family. They believe in our case and understand why we believe it is right to continue fighting so hard to save Charlie," she said.
她说：“总统和教皇的支持给了我们希望。他们都是对家庭有信仰的人，他们对查理有信心并且理解为什么我们为了挽救查理的生命而艰苦战斗。”

新治疗手段能否挽救查理生命？

Trump did not elaborate on how the US might help the child, but a US doctor has agreed to carry out an experimental treatment called nucleoside bypass therapy.
虽然特朗普并未说明美国会如何帮助查理，但一位美国医生表示同意对查理进行一项名为核苷分流治疗的实验性治疗。

查理的父母目前已经筹集到130万英镑的善款，可以用于查理前往美国的治疗。

As the parents explained in their fundraising efforts, the therapy is an oral medication that provides Charlie with naturally occurring compounds that his body is not able to produce. His parents hope that the medicine might repair his flawed mitochondrial genes. Mitochondrial DNA depletion has a poor prognosis and leads to weakened muscles and organ dysfunction, among other symptoms.
在募款活动中查理的父母解释道，核苷分流治疗原理是通过口服药物来补充查理的身体无法产生的天然化合物。他们希望这些药物可以修复查理线粒体基因缺陷。查理所患的线粒体DNA缺失综合征预后不良，会引起肌肉无力、器官功能障碍和其他并发症。

According to bioethicist Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics, the experimental therapy offers a very small chance of some improvement. It has never been used to treat this form of mitochondrial DNA depletion syndrome, though it has proved beneficial to patients with a different form of the disease.
牛津上广实用伦理学中心生命伦理学家朱利安•萨乌雷斯古称，此种疗法改善病情的几率微乎其微，且从未用于查理这种症状的治疗。虽然对好几个患有线粒体缺陷的病人有作用，但是病情与查理的不一样。

2014年，也曾有类似案件受到世界关注。当时，5岁的英国男孩Ashya King身患癌症，父母不顾医生的建议，将他从医院带离，寻求英国没有的一种疗法——质子射线疗法。这对夫妇曾因此在西班牙被捕，但最终获准带儿子去捷克治疗。小孩现在已经痊愈回到学校，英国也正在建设3个质子射线疗法中心。

最新进展

A US hospital has offered to ship an experimental drug to the UK to help treat critically ill Charlie Gard.
美国一家医院将把一种实验性药物寄送到英国，帮助治疗生命垂危的小查理。

New York Presbyterian hospital and Columbia University Irving medical center also offered to admit the 11-month-old if legal hurdles could be cleared.
纽约长老教会医院和哥伦比亚大学欧文医疗中心还答应说，如果不再有法律障碍，将接收小查理前来治疗。