[咨询求助] 两岁儿子患上罕见病症,喝口奶吃块肉都有可能“病危”, 年轻妈

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发表于 2017-9-8 16:59:31 | 显示全部楼层 |阅读模式
昨天,躺在病床上的马瑛瑛拿起手机拍了一张自拍照。手术两天后,这个漂亮的年轻妈妈看上去状态还不错。

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病床上的马瑛瑛

“我妻子今天能吃流质食物了,气色好了很多。孩子还在ICU,目前没有消息,但是没有消息就是最好的消息。”丈夫伊澹敏说,自从9月11日妻子和儿子住进上海仁济医院,昨天是他最轻松的一天,悬着多日的心总算放下一些。

两天前的中午,当看到妻子被从手术室里推出来,伊澹敏不禁泪流满面,他紧紧握住妻子的手,默默地说了声“谢谢”。

现在,马瑛瑛的左叶肝脏已经植入两岁儿子的体内,并开始发挥作用。母亲和儿子再一次血肉相连了。

十万分之一概率的怪病被这个孩子遇到了伊澹敏一家来自宁波象山,两年前的6月,小生命童童的诞生,让这个家庭多了很多快乐。

  可是,出生没几天,家人就发现,这个孩子有些“奇怪”:特别嗜睡,而且不喝奶。 

 童童的表现让家里人忧心,送到县里医院检查,医生却说不出个所以然来,情况反而越来越严重。童童一度呼吸衰竭,陷入深度昏迷。之后,紧急送到宁波的医院后,被确诊为“高氨血症”。

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马瑛瑛和可爱的儿子

“全家人都懵了,听都没听过这种怪毛病。”伊澹敏说。

医生的解释,更让夫妻俩陷入绝望:“高氨血症”是一种十分罕见的疾病,属于先天性代谢障碍性疾病。伊澹敏专门了解过,“高氨血症”的患病几率为十万分之一,全宁波目前只此一例,省内这些年也只发现十来例。

最可怕的是,这种病的患者表面看似与常人无异,但因体内缺少一种分解蛋白质的酶,只要摄入蛋白质,就会在体内转成氨,从而造成氨中毒。

  患了这种病,所有含有蛋白质的食品对童童而言,都是致命毒药。

  小孩子成长,怎么可能离开蛋白质?幼小的童童从出生开始,就经历了严峻的生存考验。

“儿子从出生到现在,没有喝过一口母乳。”对此伊澹敏很是心痛,有时候看他实在馋,米粒大小的肉让他沾一点,血氨指标马上就升上去。

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