High Risk result for Downs baby...Test different for Asians and Caucasians???

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Shenzhennifer

Registered User
I just had a Combined First Trimester Screening of Fetal Down's Syndrome in SZ at a private hospital. The results came back very bad for me. I'm 31, and my risk factor was 1:85, compared to normal minimum 1:250.
I can't understand why at all, other than really bad luck, but obviously I want a second opinion as I don't necessarily trust this Chinese hospital. So I was recommended Beijing University hospital and I went today. It was a madhouse and finally I found an English speaker who would help me. She spoke to a doctor who REFUSED to re-test me because I'm not ASIAN (i'm white), and maintained that the tests were different for asians and caucasians.
I never heard of this before and I think it's a load of &%*# actually.
Has anyone heard of this?

Also, I'm really upset at these numbers and this risk factor I was given. Has anyone had similarly poor numbers and if so, what did you do? I'm really stuck here in this country (on a tourist visa so can't hop and skip to HK whenever I want), and I feel so trapped and helpless.

I really wish I lived in HK now, more than every other day...
 
Hi, I had an OSCAR test here in HK, and it was also high risk for Downs (1:80s), however I was around 39 y.o. I'm not sure if it's different for Asians & Caucasions, but I then had a chorionic villus sampling to exclude Downs. Amniocentesis is also another choice.
I think it's best if you can go to an obstetrician that has the knowledge and facilities to do the appropriate tests and interpret them for you.
 
Expat medical clinic

Hi, Jennifer, sorry to hear that.

But why don't you go to an expat medical facility to get a proper exam? When I was living in Shanghai, I would never go to the local hospitals there, there are some clinics that expats normally go to (very expensive but usually the company insurance policy will cover the cost, the doctors there are usually westerners or Chinese who are trained in the west). The one in Shanghai is called Worldlink, maybe it doesn't have a branch in Shenzhen, but I'm sure there are other expat medical clinics there since there is such a big expat community in SZ. You should be able to find some ads in those free English newspaper or magazines. Or just google it. Hope this helps.

By the way, I never heard of any difference in terms of testing for Down syndrome risk between Caucasians and Asians. I really seriously doubt this doctor's knowledge.
 
Hi- with my first pregnancy I also had the OSCAR test and had a high risk for downs- 1:60 (and I was 25 yrs old).
My Dr. wanted me to have an amnio but I refused.
At 20 weeks or so I had a fetal abnormality scan and while it can not 100% rule out downs, a specialist can let you know if the baby has any physical signs of downs- which my son did not.
My son was born completely healthy.

With my second pregnancy I refused to put myself through the test again, and just did the fetal abnormality scan which was fine, and daughter was born fin.

It is worrying- but the test can be wrong, it is known to give 'false positives,' I would find another Dr and do the test again, or go for a fetal abnormality scan.

Hope all goes well!
 
Thanks for your help, you guys. I will have a re-test tomorrow at a different hospital and then there's nothing I can really do for a while. It's too early for an amnio and I don't know if I really want to do that.
When did you have a fetal abnormality scan? What week? I had my last one at 12 weeks and they said FINE!
Shenzhen is seriously underdeveloped. It looks flashy with it's Gucci stores, Starbucks and tall buildings, but it's still very much a developing place. All the expats here go to HK, somewhere I'm not really able to go to easily. Even more and more mainlanders are going to HK for the good services. Shanghai probably had nice services bc there was no place to escape to - the SZ market has to compete with HK which is FAR superior in every way.
I really hate Shenzhen.
 
I know that there is some test, not sure what the technical name is, but is where they measure the space around the spine or brain. Sorry, I can't be more specific but I have heard of people having this test done at around 13 weeks. I would talk to your doctor about getting that done. Also, I have heard of people with much lower statistics 1:30 and their babies have turned out perfectly fine. I know that the results can be quite stressful but try to remember that it is only a statistical anaylsis and isn't concrete. :bighug
 
nuchal fold test... done through ultrasound.

im guessing that it was this test plus a blood test that gave you the numbers....


keep in mind it still means that it is 1 chance out of 60 that the baby could have down syndrome....it is NOT given.
 
Dear Shenzhennifer,

Carang is right that both tests were probably used to determine your odds. Getting the test redone at another facility is an option, the other is getting hold of your tests and sending them overseas to have a second opinion as they can read the ultrasound/ interpret the tests for you in your home country. I know for sure that Mass General in Boston, Massachusetts has this facility but you have to pay for it.

Finally, the last piece of advice I would have for you is that if you are having communication difficulties with your docotr, you need to change as the risk of miscommunication and an advierse outcome is heightened if there is not rapport between the two of you. Hope this helps.
 
Do you know specifically what tests were done? How worrying!

As far as comparing it to what is happening in canada ( at least where I live), currently all women are offered blood test called the quad screen. It used to be the triple screen., but now improved. the quad screen measures AFP (alpha fetoptotein), hCG (human chorionic gonadotropin), uE3 (unconjugated estriol) and DIA (dimeric inhibin A). All 4 are used for risk of down's and trisomy 18. The first alone is also used for neural tube defects.

The detection rate for down's is 75-80% with a 5% false positive rate
dectionrate for trisomy18 70% , false +ve 1%
detection rate for neural tube 80-85% with a 3% false +ve. Here no one gets a nuchal translucency testunless you are high risk and it has to be done at 11 to 13 weeks.
Amniocentesis or CVSis aslo only for high risk, or if you show to have higher risks with the quad scrren, also you generally get sent to genetic counselling where they can really discuss the results and what they really mean. I know some people go for amniocentesisi and some don't as that also has its own risks so if the risk of miscarriage is higher than the risk of disease some decline, others need that reassuance to know what is really happening, very individual decision. If your second tests are also high could you be referred to a genetic counsillor?

adding,

I have never heard or read anything about racial differences in test results
 
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if u knew your baby had downs syndrome, would u still keep it or would u abort it immediately? If u would keep it regardless then no point putting yourself through so many tests and stressing yourself out.

Regarding your luck, I think around 20% of pregnancies end in miscarriage (mostly due to wrong chromosomes), so don't feel too bad you're not alone. Plus you've made it further than the other 20% and there's a good chance your baby is still all right.
 
Thanks for all your reassuring replies. I'm not really into the whole amnio thing, and no I would not abort it. I'm 15 weeks now. I'll be seeing a doc in HK in 2 weeks along with my test results. He'll try to talk me into an amnio but I'll have to insist on a level-2 ultrasound. And pray for the best. Although when I talked to a woman on the phone today and I told her my test results, she told me how bad they were. It really made me feel awful all over again. but anyway, nothing I can do but wait an assume I have a healthy little baby inside me.
 
I was re-tested and the results came back yesterday. 1:1430. All the numbers were different and fell well within normal levels. I feel much better now. It just makes you question how well you can trust tests, though.
Thanks for everyone's supports and advice~
 
Hi

When I was pregnant with my second, my tests came back with a 1:40 chance of down syndrome at 12 weeks. We had an amnio done the next day and had to wait 2 weeks for the results. In the end we stressed about nothing as my son had no chromosome abnormalities and came out fine. :)
It is a really hard thing not to worry though. So I can completely relate to the dilemma you've been through. I am so glad your second testing came back fine.
My OB at the time said there are a few other factors in the blood test which can affect the final results, but the amnio is the only 99.9% way of dispelling the Down Syndrome result.
I am glad you didn't have to go through an amnio. It is one of the most horrific and traumatic things I have ever had to go through...

Hopefully your pregnancy will continue without complication. Good Luck!
 
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