Conflicting information about Down Syndrome risk

[karolynca]

So here I sit reading all the papers I was handed in my first appointment due to my "advance maternal age" (I am 39). I am quoting something the information about the risk of down syndrome says

"While there is a link between maternal age and the occurrence of trisomies, most babies with Down syndrome are born to mothers under the age of 35. This is due to the fact that there are far more younger women having babies. In fact, 80% of babies born with Down syndrome are born to women younger than 35 and the average age of a mother of a baby with Down syndrome is 28 years. Overall, the likelihood of a woman under age 30 giving birth to a child with Down syndrome is less than 1:1000. The risk increases as a woman gets older, with an incidence of about 1:112 at 40 years of age. However, this is still less than 1%."

So overall incidence is 2% in the entire world population and still advance maternal age is less than 1%. When the vast majority of the cases are in women under the age of 35 and the average age is 28 years. I know the incidence is higher due to maternal age but can somebody explain to me why on earth they make it sound like due to age you are off the chart? I mean the incidence may be higher but that's because there are less babies born in that age range however still the percentage is less than 1% the same as any woman any other age

I think the more I read the more I just think this is some type of huge "data analysis" missunderstanding or worst

I am so ready to ask some direct questions in my "advance maternal age" consultation

 

[Darklady]

Something important to remember about statistics....

You can make them support any argument or theory if you really want to. And a lot depends on sample size

 

[karolynca]

exactly...I just feel weird because it seems all the info I was given to read was how "prone" due to my age I am for something to go wrong...specifically DS yet all the info says "it's not conclusive" why worry me in the first place

 

[Livsmom]

To confuse you even more let me add that I was shown a figure of 1 in 65 for a woman that is 40. I agree that it is ridiculous how they apparently do not really know what they are talking about. I am in California and I was offered genetic counseling. The counselor was GREAT and very reassuring. Although I opted for an amnio due to my less than perfect doctor did not do the blood test or 12 week scan to further determine my risks, I did feel very reassured by the counselor that I had a much better chance of a healthy baby than the alternative. For me, I just had to know! Good luck and try not to let the stats stress you out too much! Oh and I was also told that the older you are, the better the chances of a false postive(bad) result. Very disturbing.

 

[cheree89]

According to the 1:1000 and 1:112 stats, risk for women under 30 is 0.1%, whereas risk for someone at 40 is 0.9%.

Still pretty low either way and IMO not something to really worry about. If after tests com back and your risk is high, then there may be cause for worry, but certainly not before then

 

[karolynca]

That's exactly my point why drive us nuts and make you feel like due to your age you are doomed from the start. I put the pamphlets down and stop reading...I decided to enjoy this journey as much as I can, enough stress with the fact that I am dealing with low progesterone to now make it worst with this.

 

[Darklady]

That's exactly my point why drive us nuts and make you feel like due to your age you are doomed from the start. I put the pamphlets down and stop reading...I decided to enjoy this journey as much as I can, enough stress with the fact that I am dealing with low progesterone to now make it worst with this.

Why? Because they want to discourage the trend of "delayed families", would be my guess... expanding on the theory that women over "a certain age" are more prone to various health issues already (ignoring the fact that most of them aren't prone to those issues until later nowadays because in general people are becoming a lot more health conscious and youth-focused anyway).

There's some debate about where the threshold for "advanced maternal age" is, too.... 35, 37, 40? I've heard them all... from doctors, even.

 

[Peggy O]

I took in the info (true or undecided) they gave me and moved on. My Scan was fine and I do not have the blood test results back yet, not that it would change a thing

 

[karolynca]

Peggy that's exactly what I say...

 

[gryphongrl]

Frankly I think that us "over 35s" often have fairly good insurance and/or some financial means, and the fact that all these tests are very EXPENSIVE probably doesn't escape the OB/GYNs or the medical community at large!

 

[Peggy O]

BINGO ^

I did get my blood test back today. My results for Down's risk went down from 1/140 to 1/3000. the other test (the one that is very tragic.....I am not sure what it is called) was 1/5000.

 

[Darklady]

here in Ontario it's all covered by the provincial healthcare plan, so it doesn't matter how much money we personally do or don't have, though.

Peggy... glad your results were so awesome!

 

[Nikki Leigh]

My blood tests came back with a very high risk factor for DS. Decided to have the amnio and everything was OK.

I do think that the blood tests are not as accurate for AMA moms. If I do happen to get pregnant again, I would have to decide whether to get screened--it was VERY stressful for me and DH to go through that process.

 

[Peggy O]

Oh I'm glad everything went OK in the end. It is stressful to even think about.

 

[Meloc9710]

My blood tests came back with a very high risk factor for DS. Decided to have the amnio and everything was OK.

I do think that the blood tests are not as accurate for AMA moms. If I do happen to get pregnant again, I would have to decide whether to get screened--it was VERY stressful for me and DH to go through that process.

This sounds a lot like my situation. I had a 1:190 risk after the screening. Had the amnio, all turned out great but was very, very stressful waiting for the results. Me personally, if I had it to do again, I would skip it as I think the test has to many "false positives" as my doctor put it.

 

[misskat29]

Sorry to bump your thread, but I didn't no where to start so ended up here.

My best friend has just had the phone call saying she's high risk, at the age of 32 she has a ratio of 1:2?

She has a few weeks to wait for appointment and doesn't really no where to look for guidance, information. Any suggestions?

 

[Peggy O]

Do you know if the 1/2 result is from an ultrasound or the blood work or both? Sometimes the odds change for the better when the blood work comes back. (mine did)

 

[misskat29]

Do you know if the 1/2 result is from an ultrasound or the blood work or both? Sometimes the odds change for the better when the blood work comes back. (mine did)

I think it's both? Although, 1: it was v quick turn around of bloods? Scan and bloods late Thursday afternoon, told high risk Friday lunch, so not 24hrs. 2: would a hospital really tell you high risk with out both sets of results? That's harsh!

She has her follow up appointment 9am tomorrow, not sure what they do?

 

[Stephers35]

I declined all of this testing because none of it actually shows a diagnosis and there is no way I would risk an amnio. Anyway, I have two situations that led to my decision:

1. My best friend had all the tests, even saw a genetic counselor for extra tests for both her and DH. She ended up with a 1:5000 chance. When her son was born, he was wisked away for hours. When they returned with baby, they were told that he had down syndrome. He's now a beautiful two-year old that is so much fun to be around!

2. My brother and SIL were expecting twins and after all the testing, were told that they had a 1:10 chance and that there were "markers"on the ultrasound that made the docs believe they both had downs. After doing a ton of research, my SIL learned that mothers who are asian often have babies with these "markers." They refused the amnio because they wouldn't be willing to give up the kids either way. Fast forward a few months and they had a boy and a girl with no complications at all. No downs, no trisomy, nothing. They are now 17 months old and are crazy little kids!

Sorry for the long post, but it's so hard not to get upset when you think you're getting results and really you're only getting guesses.

 

[Babushka]

I'm 39 and pregnant too

The doctor I saw really made me panic about Downs & he kept mentioning my age which made me defend myself and tell him I wasn't ready when until now grrrrr. Anyway all the facts and figures about this are pretty scary but I'm trying to keep in mind that plenty of older women have children I personally haven't heard of any babies being born with Down Syndrome.

Have you had the screening test done yet? I'm not sure whether I will have it done or not.