她一出生就罹患罕病「舌頭比嘴巴大兩倍」差點被舌頭噎死,「從中間割開」首度露出笑容萌到你會跟著笑!

 美國南達科塔州的這名小女嬰佩斯理 (Paisley Morrison-Johnson) 一生下來就患有先天性罕見疾病,擁有跟成年人一樣大的舌頭,幾乎是女嬰嘴巴大小的兩倍,出生第一週差點因此窒息而死,必須由醫療器材輔助才能正常換氣。   經檢查發現女嬰罹患的是一種名為「Beckwith-Wie

October 14, 2016
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 美國南達科塔州的這名小女嬰佩斯理 (Paisley Morrison-Johnson) 一生下來就患有先天性罕見疾病,擁有跟成年人一樣大的舌頭,幾乎是女嬰嘴巴大小的兩倍,出生第一週差點因此窒息而死,必須由醫療器材輔助才能正常換氣。

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經檢查發現女嬰罹患的是一種名為「Beckwith-Wiedemann氏症候群」的罕見遺傳疾病,會造成舌頭腫大,全世界每1萬4千個新生兒當中就有1個病例。這樣的舌頭變異使女嬰無法從嘴巴進食,迫使院方必須經由胃管餵食。

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 女嬰6個月大時,21歲母親麥迪遜 (Madison Kienow) 及23歲父親夏農 (Shannon Morrison-Johnson) 便決定讓佩斯理動手術切除舌頭一部份,沒想到術後割除的部分又生長了回來,讓舌頭持續探出嘴外,只好進行第二次手術。這次醫師將總長超過6英吋 (15公分) 的肌肉移除,才總算停止舌頭繼續生長。 

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 目前在就讀醫學院的母親表示:「術前,她的舌頭非常肥厚,還探出了嘴巴,就像長出了成年人大小的舌頭。由於她的舌頭總是掛在外面,她常會咬到自己舌頭、被舌頭嗆到,醫生擔心會影響空氣的進出,造成窒息。醫生說那是他們見過最大的舌頭,需要盡快動手術。」

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 第一次手術時,醫生先從中間將女嬰舌頭割開,再割去舌頭兩側,直到4個月後第二次手術移除更多肌肉,舌頭才恢復正常大小。

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 而佩斯理終於首度露出了微笑!

PICS BY MADISON KIENOW / CATERS NEWS - (PICTURED: Here is Paisley now at 16months having had her second tongue reduction surgery six months ago after it grew back - she can now smile and also will be able to say mama and dada for the first time soon) - A baby born with a massive adult-sized tongue has finally been able to smile for the first time after life-changing surgery. Paisley, from Aberdeen in South Dakota, USA, had such a large tongue that she needed breathing apparatus for the first week of her life to stop her from choking to death. She was born with Beckwith Wiedemann Syndrome (BWS)  an overgrowth disorder that affects one in every 11,000 births worldwide. The rare condition caused the little girls tongue to grow more than twice the size of her mouth and it even shocked doctors, who said it was one of the largest tongues they had ever seen. Until she was six months old, Paisley had to be fed via by a gastronomy-tube because she struggled to eat and wasnt receiving the vital nutrients needed to keep her alive. - SEE CATERS COPY

 

母親表示:「我不敢相信,我的小女孩看起來漂亮極了!她進食上不再有困難,讓我們安心了許多。她開始會笑了,甚至開始牙牙學語,在這之前她完全無法發出『馬麻』或『把拔』的聲音。」她還說,術前女兒的外觀常引來不少人投以令人不舒服的目光,甚至訕笑,而她常需向對方解釋女兒的情況。醫生希望佩斯理將來不必再動手術,但仍須追蹤Beckwith Wiedemann氏症候群的其他可能症狀,包括內臟腫大、低血糖、某些腫瘤的生成機率增高。

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PICS BY MADISON KIENOW / CATERS NEWS - (PICTURED: Here is mum Madison and Paisley since the second tongue reduction - she can smile for the first time and soon will be able to say mama and dada) - A baby born with a massive adult-sized tongue has finally been able to smile for the first time after life-changing surgery. Paisley, from Aberdeen in South Dakota, USA, had such a large tongue that she needed breathing apparatus for the first week of her life to stop her from choking to death. She was born with Beckwith Wiedemann Syndrome (BWS)  an overgrowth disorder that affects one in every 11,000 births worldwide. The rare condition caused the little girls tongue to grow more than twice the size of her mouth and it even shocked doctors, who said it was one of the largest tongues they had ever seen. Until she was six months old, Paisley had to be fed via by a gastronomy-tube because she struggled to eat and wasnt receiving the vital nutrients needed to keep her alive. - SEE CATERS COPY

來源:Daily Mail

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