Thursday, April 10, 2008

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Jodi had a routine test for Down Syndrome (唐氏综合征) and it came back "at increased risk", 1/160.

So, for every 1000 women tested, about 50 will be told they have increased risk, and of the 50, about 45 or more will in fact have normal pregnancies. Some people feel that the high level of 'false-positive' readings make the test not worth the risk.

The hospital was late in getting the test results back so no time for another blood test, it looks like a amniocentesis may be unavoidable.

In China people are much more pragmatic about abortion (and arguably about eugenics, free of all the nightmare scenarios that the practice connotes in the Western mind) so Jodi and I are still talking this through.

The DSChina BBS is an active forum for Chinese parents of kids with Down Syndrome. Here's the introduction text to the main sub-forum:

母亲:可怜的孩子,为什么?为什么你是一个唐氏综合症的孩子?你比别人多了一条染色体,你永远都不会成为正常人!孩子:妈妈,你知道吗?我是上帝派来的天使,那条特殊的染色体是我背后的翅膀。上帝说,天使的翅膀是经历了最痛苦的磨难才长出来的,它象征着人性中最美好的品德——爱、坚强、勇敢、乐观,它会带我们飞越重重障碍。妈妈,看到了吗?乐土,就在我们前方!

Mother: my poor child, why? Why did you have to be a Down Syndrome child? You have one more chromosome than others so you'll never be a normal person! Child: mother, don't you know? I'm an angel sent by God, and that extra chromosome are the wings on my back. God said, the wings of an angel must grow through hardship and represent the best of the human spirit: love, perseverance, bravery, optimism. These wings will help us to overcome the greatest of obstacles. Mother, do you see it? It's heaven, just up ahead!

Things like this make you think (and do lots of Google searches).

3 Comments:

At Apr 24, 2008, 1:51:00 PM, Anonymous silvia said:

Hello, I was reading your post and I wanted to share my experience. When I was pregnant with my second baby (in China), I took the same test, and it also came as a high risk for Down syndrome. (this test is not very accurate and can have false positive or false negative). Needless to say how worried we were for the health of our child throughout the pregnancy.I made a lot of research on the net and decided that we would want our baby no matter what. The amniocentesis test it is very risky and can result even in the miscarriage. I gave birth to a beautiful healthy girl with no problems. And one thing is for sure I regret taking that test in the first place !!!!

 
At Apr 24, 2008, 5:22:00 PM, Blogger Micah said:

Thank you for sharing! You are the fourth such case that we know of, then. My friend Chris suggested that amniocenteses are a profit-making vehicle for Chinese hospitals and so they are unscrupulous in prescribing them.

It sounds like we did the same research that you did; I ended up drawing the same conclusion, that we'd want the baby no matter what, but Jodi, who lives in a China where the social safety net is not as well established as in the US, worries that when the child grows up and the parents (us) pass away s/he would have nobody to care for him or her.

 
At Apr 24, 2008, 7:53:00 PM, Anonymous silvia said:

Hey, I remember after that test for Down syndrome they sent me to a doctor that gave me options: abortion(it is awful how they say it like it's nothing!), amniocentesis or a thorough ultrasound. I found the ultrasound very comforting. In fact I did a lot of ultrasounds throughout the pregnancy! Also the mixed race kids are known to be stronger and healthier! Anyway I wish you all the best and that you have a healthy baby!

 

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