Rare but Deadly

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Screening for all?

 

At a cost of about $70 to $120 per infant, testing all babies appears to be an obvious answer to the disasters that can befall a few. In states where advanced screening is already in effect, the cost is either included in the hospital bill, covered by the state or charged to parents. To hear the stories of the Allen and Cline families, universal screening of newborns seems a no-brainer.

 

A greater problem is ensuring that every parent be informed about what screening means. Screening, after all, is not a diagnosis. But if screening raises a red flag, it means there is reason to test further. “We’ll be creating a lot of anxiety,” says Lainie Ross, associate professor of pediatrics at the University of Chicago. “Most parents are already scared out of their minds with a newborn.”

 

And it’s possible that increased screening will find children who have less severe diseases and who might have lived healthy lives never knowing anything was wrong. “MCAD is the perfect disease we should be testing for,” says Ross. “Yet … we may be creating this whole community of people who have a diagnosis, some of whom may never get sick.”

 

Averting future tragedies

 

But, as the Clines, Allens and countless other parents can attest, there have been tragedies that technology can help avert. “You can imagine,” says R. Rodney Howell, professor of pediatrics at the University of Miami School of Medicine and chair of the newborn screening expert group, “if someone says your new baby has MCAD and we can put the baby on a special program and he or she will do fine — you’d go ballistic if you had a baby die of that condition. There are not a lot of things we do that can make this much of a difference.”

Vocabulary Focus

no-brainer (n) [5nEu5breinE] something that is very simple to do or understand

red flag (n) something that serves as a warning signal or indicates a sign of danger

avert (v) [E5vE:t] to prevent something bad from happening

attest (v) [E5test] to state with authority that something is true, or to show that something is likely to be true

go ballistic (idiom) to become extremely angry

 

Specialized Terms

chair (n) 主任；主席 the person in charge of something, such as a meeting, committee or department

罕见却致命的疾病

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全面筛检？

在每个婴儿的筛检费用约为70～120美元的情况下，新生儿全面筛检看来是针对可能降临在少数婴儿身上之不幸的明显解决之道。在一些已经实施进阶筛检的州，筛检费用不是已纳入医药费，就是由州政府给付或由家长自付。听过艾伦及克莱两家的故事后，新生儿全面筛检似乎是再简单不过的选择。

另一个较大的问题是确保每一个家长了解筛检的意义。筛检毕竟不同于诊断，但若筛检结果显示警讯，则有必要做进一步检验。兰妮·罗丝是芝加哥大学儿科副教授。她说：“我们会令许多人感到焦虑，许多刚有新生儿的家长都已经吓坏了。”

扩大筛检也可能诊断出一些患有较不严重的疾病的儿童，他们或许一生健康无忧，从来不知道自己患病。罗丝说：“MCAD是我们绝对应该检测的疾病。但是……我们也可能诊断出一大群罹患某些疾病的婴儿，其中有些或许永远不会发病。”

 

避免未来悲剧

克莱及艾伦两对夫妇及无数其它家长可以证实，有些悲剧是科技能够帮助避免的。R·罗德尼·豪威尔是迈阿密大学医学院儿科教授及新生儿筛检专家小组的主任，他说：“想象一下，若有人说你的新生儿患有MCAD，而他们可以将婴儿纳入一项特别医疗计划，让婴儿平安无事，而且你曾有新生儿因 MCAD 死亡，那么你肯定会气炸。我们能做的事中，没有多少像这件事一样能明显改善现况。”

 

筛检拯救新生儿基金会(Save Babies Through Screening Foundation)： www.savebabies.org