忘了呼吸的小男孩

听到孩子咯咯的笑声，大多数家长的脸上都会扬起微笑，但母亲Sarah Cross却害怕听到儿子Sam的笑声。如果小Sam微笑得时间过长，就可能会因此而丧命。现年6岁的Sam患有先天中枢性换气不足症候群。他在焦虑不安，生病，与朋友玩耍，专注观看喜爱的电视节目，甚至是睡觉时，都会“忘记”呼吸。在全英国，此类疾病的患者约有60人。



THE sound of their child giggling would make most parents smile but it is one that Sarah Cross dreads. If her little boy Sam laughs for too long it can be life-threatening. Sam, aged six, is just one of around 60 people in Britain with congenital central hypoventilation syndrome (CCHS), which means he often stops breathing. It can happen if he’s upset, ill, playing with friends or just concentrating on his favourite TV programme. It always happens when he falls asleep.





38岁的母亲Sarah说，“小Sam看上去健康，快乐，但却患有致命的疾病，在微笑的时候会停止呼吸或是呼吸不足。如果小Sam不能够获取足够的氧气，那么他就会晕过去，所以长时间的微笑也是危险的。他需要有人时刻跟随着他提醒他呼吸。”



He looks like a healthy, happy little boy but he has a deadly condition,” says Sarah, 38. “Even laughing can be dangerous if it goes on for too long, because he will either stop breathing or take very shallow breaths. If he’s not getting enough oxygen he will pass out. He needs someone to bring him round and if necessary get him breathing again.”





儿科咨询师Martin Samuels来自北斯塔福德郡大学医院，是此领域的主要专家。他说CCHS或先前为人所知的翁丁咒语综合征是中枢系统影响呼吸自控的遗传症状。



Consultant paediatrician Martin Samuels, from the University Hospital of North Staffordshire, is a leading expert on the condition. He says CCHS or Ondine’s Curse, as it was formerly known, is a genetic condition of the central nervous system that affects the automatic control of breathing.





患者由于脑干损伤，时常会“忘记”呼吸。特别是在熟睡的时候，这种症状格外明显。而在其他时候，患者可能会呼吸不足从而导致体内二氧化碳堆积（常人呼吸时吐出的废气），使得血液含氧量降低。



The fault in the brain stem means those with the condition “forget” to breathe, especially during deep sleep. At other times they may under-breathe, resulting in a build-up of carbon dioxide – the waste gas we usually breathe out – and a fall in oxygen levels in the blood.





Samuels医生还说，二氧化碳浓度的上升会使患者晕过去，有时会导致脑损伤甚至死亡。



“When carbon dioxide levels rise patients can pass out, sometimes it can lead to brain damage or even death,” says Dr Samuels.





患有先天中枢性换气不足症候群的患者需要在晚上进行换气，重症者则需要全天24小时进行换气。就Sam的病情来说，他需要在气管内接入换气机。而换气机帮助他在停止呼吸的时候重新开始呼吸。



He says people with CCHS need ventilation at night, with the severely affected needing 24-hour ventilation. In Sam’s case he’s attached to a ventilator via a tracheostomy at night, which kick-starts his breathing every time it stops. When he gets older he may choose to sleep with a mask on to aid breathing instead. Sam also has a trained carer watching over him while he sleeps in case the shoebox-sized ventilator breaks down. He has a carer when he’s at school, too.





母亲Sarah在银行工作，据她回忆，Sam在出生15分钟后便停止了呼吸。“当医生把他抱给我的时候，他是那么得健康和警惕，但像所有的新生儿一样，很快就开始打瞌睡了。是助产士首先发现Sam的脸变紫的。”



Sarah, who works in a bank, says Sam first stopped breathing 15 minutes after he was born. “He looked perfect when he was first given to me. He was so alert. But like all newborns he nodded off. It was the midwife who noticed he had turned blue.”





通常呼吸问题是心脏功能缺陷的体现，但虽然Sam偶尔停止呼吸，他的心脏却没有任何问题。幸运的是负责照顾小Sam的记录员，早在Sam被确诊携带此类综合症的基因缺陷前，就已接触过先天中枢性换气不足症候群。这种缺陷通常出现在怀孕的前八个星期内，但没人知其原因。



Often breathing problems are a sign of a heart defect but Sam was given the all clear, although he continued to stop breathing. Luckily the registrar overseeing his care had come across CCHS before and Sam was tested for the gene defect which is associated with the syndrome. The defect occurs in the first eight weeks of pregnancy, though no one understands why.





单亲妈妈Sarah现在和小Sam居住在加的夫的Pontprennau，她说“我很庆幸小Sam能被诊断出患有先天中枢性换气不足症候群，但这听起来是那么得可怕。我被告知他可能永远也不会进食或是说话。我很高兴他们错了，因为小Sam现在既能吃饭也会说话。”



“I was grateful to know he had been diagnosed but it sounded scary,” says Sarah, a single mum who lives with Sam in Pontprennau, Cardiff. “I was also told he might never eat or speak. I’m pleased to say they were wrong as he doesn’t stop doing either.”





小Sam在医院度过了他生命的前9个月。在获准回家后的前几年，Sam的生活近乎与世隔绝，这是因为在没有人能看管Sam以防他睡着的情况下，母亲Sarah是不会带着他到处转悠的。小Sam由于做了气管切开术，所以特别容易受到感染，尤其是耳鼻喉的感染。

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am spent the first nine months of his life in hospital. When he was allowed home, the first few years were very isolating as Sarah couldn’t drive Sam anywhere without another person in the back watching him in case he fell asleep. Because he has a tracheostomy, Sam is also more susceptible to infections, especially those related to the ears, nose and throat.





现在小Sam长大了点儿，生活也相对轻松了点儿。Sarah能够开车带着他短距离转悠，而小Sam在学校里也很积极开朗，交了许多朋友。Sarah作为Sam的监护人，半步也不敢离开他。Sarah知道如果小Sam脸发红，出冷汗，流汗，或是四肢疼痛，那就说明他体内的二氧化碳浓度在升高。



Now Sam is a little older, life is easier. Sarah can drive him short distances and he’s thriving at school, where he has lots of friends. Sarah is never far away from Sam when she’s his main carer. She also knows if he looks flushed, is clammy or sweaty, or has aching limbs, his carbon dioxide levels are building up.





小Sam在学校的时候晕过去好几次，庆幸的是，每次都有惊无险。小Sam在必要情况下会佩戴上呼吸器，除此之外，他会被鼓励做深呼吸。Sarah说：“人们总是说小Sam看上去那么健康，问我为什么还需要大家的支援。但是小Sam每天都会“忘记”呼吸，他患上的是一种隐形的致命疾病。”



He has passed out a couple of times at school although fortunately he comes round quickly. If necessary he is attached to his ventilator but otherwise he is encouraged to take deep breaths. Sarah says: “People often say how healthy he looks and ask why I need so much support. But Sam stops breathing every day – he has a deadly but ‘unseen’ condition.”





Sarah接着又说：“像Sam这样的孩子过去常常以医院为家。作为家长，我很努力得帮助支持他，让他能住在家里。我和其它家长一样觉得他很了不起，他是那么得聪明，比我想象得更优秀。”



Sarah adds: “Children like Sam used to live in hospitals. As a parent I’ve fought hard to get the support he needs so that he can be at home. Like every parent I think he is amazing. He’s a very bright little boy and he has achieved more than I would have ever expected.





“我真的很以他为荣，我希望他在学校成绩优异，然后上大学。患有先天中枢性换气不足症候群的孩子们能够成为社会的一员，他们需要的只是大家小小的支持。”



“I’m really proud of him. I hope he does well at school and goes to university. Children with CCHS can achieve and be part of society – they just need a bit of support.”

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