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一对巴基斯坦连体姐妹的分离和新生

更新时间:2016-4-8 10:23:18 来源:纽约时报中文网 作者:佚名

Conjoined Twins, a Trip to Saudi Arabia and a Risky Operation
一对巴基斯坦连体姐妹的分离和新生

RIYADH, Saudi Arabia — The doctor told the parents to say goodbye. With wet eyes, they held out their palms in prayer and bent over the hospital bed to kiss their daughters’ tiny foreheads.

沙特阿拉伯利雅得——医生让父母和孩子道别。父母一边流着泪,一边摊开手心祈祷。在病床前,他们俯身亲吻了女儿的小额头。

The girls had spent the year since their birth facing each other like mirror images they could not escape. Identical twins joined at the belly, each had two arms and two legs, individual hearts and digestive tracts, but they shared a liver. Blood pumping through one also flowed through the other.

在这对孪生姐妹诞生后一年的时间里,她们只能面对着面,好像在照镜子。她们是腹部连体的同卵双胞胎,各有两只胳膊和两条腿,有各自的心脏和消化道,但共用一个肝脏。一个女孩体内流过的血液,也流过另一个女孩的身体。

They could stand with their mother’s help, sometimes posing cheek-to-cheek, other times draping their arms around each other’s neck as if slow dancing. Now, shortly after their first birthday, they had traveled from their poor town in Pakistan to oil-rich Saudi Arabia for a rare and risky separation surgery that would radically change their lives.

在母亲的帮助下,她们可以站起来,有时会脸颊贴脸颊,有时候会把手臂绕过对方的脖子,如同跳慢舞的姿势。现在,在她们第一个生日之后不久,这对孪生姐妹从巴基斯坦的贫穷小镇来到盛产石油的沙特阿拉伯,进行罕见而危险的分离手术,这将彻底改变她们的生活。

“I still have doubts, and I am scared,” said their father, Nisar Ghani, 45, as the doctors wheeled the girls, Fatima and Mishal, toward the operating room. “In the end, it is all up to God.”

“我仍然有些怀疑,感到很害怕,”当医生将法蒂玛(Fatima)和米沙勒(Mishal)姐妹推进手术室的时候,她们的父亲、45岁的尼萨尔·加尼(Nisar Ghani)表示。“终归得由神来决定。”

The operation, on March 26, was part of a long-running Saudi program to separate conjoined twins who come from poor families around the world. Dr. Abdullah Al-Rabeeah, the surgeon who leads the program, said that since 1990 it had performed 40 procedures for families from 20 countries — on three continents — who could not otherwise afford the costly operations. That included 34 separations like Fatima and Mishal’s; two “sacrifice” operations, as Dr. Rabeeah described them, in which an ailing twin was removed so the other could live; and four that excised extra body parts from individual children.

手术是在3月26日进行的。沙特在开展一个长期计划,为世界各地的贫困家庭分离连体双胞胎,这个手术就是计划的一部分。主管这个计划的外科医生阿卜杜拉·拉比耶(Abdullah Al-Rabeeah)表示,自1990年以来,他们已完成了40台手术,患者来自三个洲的20个国家,都是无力承担昂贵手术费用的家庭。其中包括34台类似于法蒂玛和米沙勒这样的分离手术;有两台是拉巴哈所说的“牺牲式”手术,即牺牲双胞胎中的其中一个,以便让另一个活下来;还有四台手术,是切除孩子多余的身体部位。

The program has not widely reported its work in scientific journals; Dr. Rabeeah said 70 of its 74 patients were still alive.

该计划尚未在科学期刊中获得广泛报道;拉比耶表示,总共74名患者中有70人目前依然在世。

Dr. James O’Neill, a professor of pediatric surgery at Vanderbilt University Medical Center who has also separated large numbers of conjoined twins, said he did not know much about the Saudi program. But after looking into it, Dr. O’Neill said the program appeared to be one of the largest of its type in the world. “On a surface level, it sounds quite valid,” he said.

范德比尔特大学医学中心(Vanderbilt University Medical Center)的小儿外科教授、医生詹姆斯·奥尼尔(James O’Neill)也实施过不少连体婴分离手术,他表示自己不太了解沙特阿拉伯的这个项目。但经过一番探究之后,他表示这个项目似乎是世界上规模最大的此类项目之一。“从表面看,它似乎是相当有效的,”他说。

Success, he noted, should be measured not only by survival rates, but also by the causes of death for patients who did not make it, and the quality of life for those who did.

他指出,这种手术的成功不应该只以存活率衡量,还应考虑没能活下来的病人的死因,以及存活下来的病人的生存质量。

Dr. Rabeeah said that of the four patients who did not survive, two died from heart disease, one from cholera and one from meningitis. Some of the other former patients keep in touch and occasionally send photographs. Two girls from Sudan whom he separated in 1992, for example, recently visited after graduating from college.

拉比耶表示,在手术后没能存活下来的四名病人中,有两名死于心脏病,一名死于霍乱,还有一名是因为脑膜炎。其他接受手术的病人有些还在保持联系,偶尔会发来照片。比如,1992年,拉比耶曾为两名苏丹女孩做手术,她们刚刚大学毕业,最近来拜访过他。

The program is housed at the King Abdullah Specialist Children’s Hospital in Riyadh, which is run by the Saudi National Guard. It is driven by a mix of royal largess, Islamic charity and shrewd public diplomacy.

实施该项目的地方,是该国国民警卫队(National Guard)开办的阿卜杜拉国王儿童专科医院。王室的慷慨、伊斯兰的慈善和精明的公共外交,是推动该项目的几股力量。

King Salman approves individual cases and the government foots the bills, giving patients and their families first-class plane tickets and free accommodations. The operations are heavily promoted by the local news media, and a reporter and a photographer for The New York Times joined Saudi journalists inside the operating theater for the Ghani girls’ surgery.

实施手术的病例要由萨勒曼国王逐一批准,政府则为手术买单,并给病人和家属提供头等舱机票和免费住宿。这些手术得到了当地媒体的大力宣传。《纽约时报》的一名记者和一名摄影师,与沙特当地记者一起在手术室内观看了为加尼姐妹进行的手术。

“It is a unique, rare anomaly that draws the attention of society and of anyone who wants to help, and I have become enormously attached to it,” said Dr. Rabeeah, 66, a grandfatherly Canadian-trained surgeon who has become something of a national hero.

“它是一种非常独特和罕见的异常现象,会吸引社会和所有想施以援手的人注意,我对此倾注了很多的热情,”66岁的拉比耶说道,这位在加拿大接受过医学训练的医生面容慈祥,已经成了某种民族英雄般的人物。

A former health minister who treats members of the Saudi royal family, Dr. Rabeeah has become so associated with conjoined twins that his identical-twin daughters — the youngest of his eight children — once asked their mother, “When did our dad separate us?”

拉比耶曾担任过卫生部长,现在的患者包括沙特王室成员。他和连体双胞胎的关系如此密切,以至于他的两个同卵双胞胎女儿一度问她们的母亲,“爸爸是什么时候把我们分开的?” 拉比耶有八个孩子,双胞胎女儿排行最小。

For the Ghani family, from the Swat Valley in Pakistan, the twins’ birth had been a mix of joy and trauma. Mr. Ghani said that he had left school in eighth grade to help his father farm, then came to Saudi Arabia to work, while his wife, Leena, stayed in Pakistan with their first three daughters, now 9, 7 and 4.

对来自巴基斯坦斯瓦特山谷(Swat Valley)的加尼一家来说,双胞胎的出生既带来了欢乐,也带来了打击。尼萨尔称自己在上八年级时辍学,在父亲的农场帮忙,后来又来沙特阿拉伯工作,妻子莱纳(Leena)则留在巴基斯坦照顾他们的前三个女儿。这三个孩子现在分别为9岁、7岁和4岁。

The couple were overjoyed when Ms. Ghani became pregnant with twins because they thought it gave them a better chance of having a son, Mr. Ghani said. When the girls were born conjoined, the doctors spirited them away and did not tell their mother, fearing it would shock her. She said she finally coaxed the news out of her 7-year-old daughter three days later.

尼萨尔说,妻子怀上双胞时,夫妻两人欣喜若狂,因为他们以为这样便有机会生个儿子。连体婴儿出生时,医生把孩子偷偷带走,并未告诉她们的母亲,因为担心打击到她。她说自己是三天后,才终于从7岁的女儿口中套出实情。

Mr. Ghani returned from Saudi Arabia to search for a solution to a condition some of his neighbors saw as divine punishment.

一些邻居认为这是上天的惩罚。为了寻求解决办法,尼萨尔从沙特阿拉伯回到家中。

“Me and my family were worried that the people around us would not know how to react,” he said.

“我和家人担心周围的人不知道会作何反应,”他说。

The family eventually found a hospital in Islamabad that could care for but not separate the girls, who were becoming harder to manage as they grew. As with any twins, they ate more and soiled twice as many diapers as the couple’s previous babies, but Fatima and Mishal could not be separated when they tried to steal each other’s food.

最终,加尼一家在伊斯兰堡找到一家医院。该医院能照料两姐妹,但无法对其进行分离。随着姐妹俩一天天长大,照料她们的难度也在增加。和所有双胞胎一样,她们吃的更多,用的尿布是夫妇两人之前的孩子的两倍,只是当法蒂玛和米沙勒试图偷对方的食物时,旁人无法把她们分开。

“Sometimes they fight and sometimes they embrace,” Ms. Ghani said.

“有时候会打架,有时候又会互相拥抱,”莱纳说。

Eventually, a Pakistani doctor wrote to Dr. Rabeeah. The family flew to Riyadh early last month.

最后,巴基斯坦的一名医生给拉比耶写了一封信。于是,加尼一家于上月初飞赴利雅得。

The trip was a major status upgrade for Mr. Ghani, who for 12 years had earned $530 a month as a driver for a Saudi family. Now he was effectively a guest of the king.

对尼萨尔来说,这次去沙特阿拉伯时,其地位有了重大的提升。在之前的12年里,他一直在给一个沙特家庭开车,每月工资530美元。而这一次,他实际上是国王的客人。

On the day of the operation, the couple watched via a big screen in an auditorium on another floor, he tapping out messages to relatives on his phone, she quietly weeping and reading the Quran.

手术当天,夫妇两人在另一个楼层的礼堂里通过大屏幕观看手术进展。手术期间,尼萨尔用手机给亲戚发信息,莱纳则一边流泪,一边默念古兰经。

In the operating room, built specifically for conjoined twins, with two sets of medical equipment, a team of 20 doctors, nurses and technicians cleaned the girls and applied anesthesia, then marked their bodies and began to cut. The team soon fell into a rhythm, talking softly over the whir of the machines and the overlapping beeps of the two heart monitors.

在专门为连体双胞胎搭建的手术室里,有两套医疗设备和一个由20名医生、护士及技术人员组成的团队。他们为姐妹俩清洗了身体,并对她们进行了麻醉。在两人的身体上做了标记后,他们便开始切割。整个团队很快便进入了节奏,在机器的嗡嗡声和两台心脏监测仪重叠的嘟嘟声中轻声交谈。

The hardest part was splitting the liver, which turned out to be essentially two livers fused into one, making the separation easier, Dr. Rabeeah said. Five doctors clustered over the girls, some holding back the skin while one cut and cauterized, and another stitched up arteries to prevent blood loss.

拉比耶说,最难的部分是分离肝脏。后来证明两人的肝脏只是合二为一,降低了分离的难度。五名医生围在两姐妹的身边,几个人拉着皮肤,一人进行切割和灼烧,另一人缝合动脉,以防止失血。

Upstairs in the auditorium, nurses on break dropped by to watch the operation, as did members of the National Guard in camouflage uniforms and red caps.

在楼上的礼堂里,休息的护士和身穿迷彩制服、戴着红色帽子的国民警卫队员都顺便过来观看手术。

In the front row sat Nabil Abdulhaq, a Yemeni school inspector whose son Ahmed had been born two years earlier with two bodies but a single head, heart and set of lungs. Mr. Abdulhaq showed a picture on his phone of the boy lying on a bed with an extra half-torso extending from his chest, with two extra arms and legs.

前排坐着纳比勒·阿卜杜勒哈克(Nabil Abdulhaq)。他是也门的一名督学。两年前,他儿子艾哈迈德(Ahmed)出生时有两个身子、一个头、一个心脏和两页肺。阿卜杜勒哈克给周围的人看他手机上的一张照片。上面是他儿子躺在床上,胸部生出了另外半个身子,因此多了两个胳膊和两条腿。

Now Ahmed, whom Dr. Rabeeah operated on in February, was running around the auditorium, gleefully swiping toys from other children.

今年2月,拉比耶对艾哈迈德进行了手术。此时,这个男孩正在礼堂里到处跑,兴高采烈地拿走其他孩子的玩具。

Back in the operating room, having divided the liver, the doctors cut through the girls’ abdominal muscles and started on the last strip of skin that connected them.

手术室里,已经完成了肝脏分离的医生切开姐妹俩的腹部肌肉,开始处理把两人联结在一起的最后一块皮肤。

Smoke rose from the table and the smell of seared flesh filled the air. Then Dr. Rabeeah counted down from five, finally proclaiming, “Zero! Praise God!” as the girls were separated.

手术台上冒起了烟,空气里弥漫着一股肉烧焦的味道。然后,拉比耶从五开始倒数,并在姐妹俩成功分离时说:“零!赞美真主!”

The nurses burst into applause.

护士们爆发出了热烈的掌声。

Then, for the first time in their lives, the girls were placed on separate beds. The team sewed them up, and plastic surgeons gave each one a belly button. Once stabilized, the girls were wheeled into a hallway to meet their parents, a crowd of well-wishers, the Pakistani ambassador and a local television crew that was broadcasting live.

之后,两姐妹生平第一次被单独放在各自的床上。团队人员对她们进行了缝合,整形外科医生给两人做了肚脐。身体情况一稳定下来,姐妹两人就被推到了走廊上,和她们的父母、一群祝福的人、一名巴基斯坦外交官和当地一家正在进行现场直播的电视台工作人员见面。

“You can kiss them,” Dr. Rabeeah said.

“你可以亲吻她们了,”拉比耶说。

Mr. Ghani did, then stepped back, bowed down and pressed his forehead to the tile in thanks.

尼萨尔亲了两个女儿。然后,他后退一步伏在地上,额头触地以示感谢。

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