ultrascreen results - need good thoughts and experiences

My MD just called to say the results came back with an elevated (1 in 99) chance that baby has down syndrome. Please share similar experiences :(

Re: ultrascreen results - need good thoughts and experiences

I'm sooo sorry. Hang in there.
Prayers for you.


Sorry I don't have specific advice on this.

Re: ultrascreen results - need good thoughts and experiences

I don't have any experience but wanted to send I know it sounds high but remember that is only a 1% chance...and there is a 99% chance that everything will be fine. Do you have to go back for more testing?

Re: ultrascreen results - need good thoughts and experiences

With DD, my results were 1 in 300 (somewhere around there)...I asked, and the measurements on DD's neck was perfect, the figure was a result of my bloodwork. DD was 100% fine.

My girlfriend, who had a baby 6 months before DD, had results of 1 in 35 or something....and her DD was fine as well.

My best friend didn't have the test even done because her nurse told her that the results so often come back with "false positives" and everything is fine.

For me, knowing that the measurements on DD were fine, and it was a matter of bloodwork, I just "knew" everything was fine. I opted NOT to have the amnio, as risk of miscarriage from the amnio was almost higher than the odds that DD had Down's syndrome.

Re: ultrascreen results - need good thoughts and experiences

Posted by Heather617

I don't have any experience but wanted to send I know it sounds high but remember that is only a 1% chance...and there is a 99% chance that everything will be fine. Do you have to go back for more testing?

Re: ultrascreen results - need good thoughts and experiences

I believe this test also has a very high false positive rate--which is why some doctors allow you to opt-out of having it done.

My sister never had hers done.

Re: ultrascreen results - need good thoughts and experiences

I had tested with a 1/74 chance...when I had my bloodwork done at 16 weeks...the results came back as 1/2500.

Re: ultrascreen results - need good thoughts and experiences

I had a similar result - based upon my age and bloodwork from the ultrascreen, i had a 1 in 125 chance of Downs

my dr suggested we speak to a genetic counselor before making any decisions on what to do. We did, and made the choice to have an amnio done in order to get more definitive results.

We had the amnio last week and had FISH test done as well. The FISH results came back the next day and were 100% negative for Downs and Trisomy 13 and 18 (and they confirmed the sex of the baby)

Based upon that, i'm really really really glad we did the testing. We're still waiting for the final results of the amnio, but since the FISH test ruled out Downs, i'm not as worried about the results anymore.

You should read up on it more, or talk to a counselor if you are trying to figure out what to do. I think that its important to make an informed decision on if you want further testing or not. For US, it was important to know one way or the other and we were confident that the place where we had the amnio done was well versed in doing them and the risk was very very low.

Re: ultrascreen results - need good thoughts and experiences

Re: ultrascreen results - need good thoughts and experiences

My cousin's son's feet were turned in. They went for genetic testing and found out his wife had a 1 in 5 chance of Down's. Aside from needing surgery on his feet he is fine. I know it's so hard, but think positive!

Re: ultrascreen results - need good thoughts and experiences

Thank you for sharing your stories, and the prayers. We are going for genetic counseling later this week and will go from there. I'm assuming I'll go ahead with further testing such as an amnio. That's definitive, correct? I would like to be prepared. At this point it will have me curious the entire pregnancy. If my child does have Downs I would like to start learning more, and preparing the boys.

My results were not just the bloodwork - she said the number comes from the neckfold measure, bloodwork and my age.

Now I'm super concerned about things that have bothered me a bit this PG so reading into everything. I'm only 33 but have a family history of pre-mature menopause - so what if my eggs are a lot older than my actual age, KWIM? And the baby is measuring about 5 days larger than my calculations - which I know where on target since we were trying. Does that mean anything? Probably not, but now I'm wondering.

Re: ultrascreen results - need good thoughts and experiences

Re: ultrascreen results - need good thoughts and experiences

I had a similar experience--mine came back with my older DS something like 1/75. Mine was primarily due to a low PAPP-A (the blood work). We decided to do an amnio and it was completely Normal. It was my first pregnancy and this was such a difficult time for me. Because of the low PAPP-A (which is part of the blood work) I had to have more frequent sonos to make sure he was growing okay, but that was it. Please feel free to FM any questions!

Message edited 4/11/2011 7:32:44 PM.

Re: ultrascreen results - need good thoughts and experiences

no experience but many

Re: ultrascreen results - need good thoughts and experiences

my coworker had a 1:20 result. She had an amnio and everything was fine.

Re: ultrascreen results - need good thoughts and experiences

Praying for you Jessee!

Re: ultrascreen results - need good thoughts and experiences

We have a 1 in 115 chance & I'm 35 but we decided not to go for further testing and just pray that everything is ok.

It's a hard situation because no matter how many stories you hear that it turns out to be a false positive or something minor, you can't help but have a little fear in the back of your mind. Try not to worry too much

Re: ultrascreen results - need good thoughts and experiences

praying everything is ok!!!!

Re: ultrascreen results - need good thoughts and experiences

No experience but praying everything is ok!

Re: ultrascreen results - need good thoughts and experiences

1 in 99 is really really good and I am sure everything will be fine. I wouldn't worry about the other stuff you posted (aged eggs, etc), you are letting your mind wander and I know it's hard not too but just try to focus on the stats-1 in 99. That means out of 99 babies, 98 of them will be born healthy and fine. Yours is one of those 98

Of course, because you want to hear that your chances are 1 in 10,000, you can't stop thinking about it even though statistically you have very little to worry about-so I would probably get the amnio as well, since the results are definitive, and, like you I would just want to know with certainty and stop worrying for the rest of my pregnancy.

Re: ultrascreen results - need good thoughts and experiences

I'm sure everything is fine! What did the doctor say afer the NT scan about the neck fold measurement? Did he say the measurement was normal? You will likely get much more reassuring results from the second part of the test at 15-16 weeks. I think it is called sequential screening or integrated screening. I got 1 in 1,700 at 12 weeks and 1 in 10,000 at 15 weeks. I would have opted for amnio or CVS if doctor had recommended it.

Good luck and hang in there!