Can You Reassure Me About Down Syndrome Test Results? - Mothering Forums

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#1 of 15 Old 07-29-2010, 04:47 PM - Thread Starter
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I had my NT scan and finger prick test one week ago, and I got a call from the doctor's office today. My risk for Down Syndrome is 1:712. I'll post all my numbers below.

The genetic counselor said that everything is in the normal range and that most doctors would say everything is fine and send you on your way, but this office likes to do additional screening if the risk is less than 1:1000. They want me to come back in 3 weeks to do an early anatomy scan and a quad screen. (The quad screen is like the triple screen, but it tests for one additional protein.) She said this test would determine whether or not I would need to make an appointment with her (the genetic counselor) to discuss a possible amnio or CMV.

She did say that it was my choice to do the additional scan and blood work in three weeks and that many people choose to skip it, but of course I'm now worried and definitely going to go for the additional screening.

Here are all my numbers:

Down Syndrome Risk 1:712
Risk for other disorders tested for: < 1:10,000
HCG 1.76, 80th percentile
PAPP-A 0.86, 40th percentile
Nuchal fold 1.7 mm

NOTE: Based on age alone, my risk at 34 would be 1:308, so my risk actually went down with the blood work factored in.

Mamas, can anyone reassure me? This is my first baby and I've never been through this before. Am I all worried for nothing?

Thanks so much for any info you can offer.

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#2 of 15 Old 07-29-2010, 04:54 PM
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I had an increased down syndrome risk shown on the triple screen test during my last pregnancy. It showed 1/129. It should have been 1/1000 based on my age. I got the high-level ultrasound which showed no signs of down syndrome and we continued the pregnancy without thinking about it again, really.

The great news for you is that the NT scan shows a lower risk than just based on your age. Also, a 1/712 chance means that you have a 99.9% chance of having a non-downs baby.

I know that it is worrisome, but please try not to worry. The odds are in your favor for a healthy baby!

Wife to J, SAHM to W (03/06) ribboncesarean.gif at 32w4d, C (10/08) ribboncesarean.gif, and H (02/11) ribboncesarean.gif

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#3 of 15 Old 07-29-2010, 04:57 PM
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I just had this test and my Nuchal fold was also 1.7 mm and the doctor said that was perfect. Does your insurance cover the additional testing?

Wife of the husbandit and mommy to the wonderful G-Mack, born 1/30/2011
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#4 of 15 Old 07-29-2010, 05:29 PM - Thread Starter
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Thank you, Mrs-Mama. It's very reassuring to hear your story. You must have been really scared by the 1:129 risk! I'm so glad everything turned out okay for you. And I appreciate you sharing your story. It really helps.

Nintendork, the nuchal fold is fine, it's the higher HCG and the lower PAPP-A that carries the risk. But, then again, my risk went down with those numbers factored in, so hopefully there's nothing to worry about. I'm sure insurance covers the additional testing, but I'd get it even if I had to pay out of pocket.

I would really love to hear more stories and get more reassurance if anyone out there has something to add. Thanks so much in advance.

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#5 of 15 Old 07-29-2010, 06:17 PM
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Hi Korey, try not to worry! That is less than a 1% chance. Try to visualize 712 people lined up and only one would be affected, I think that those are very good odds. I opted out of all genetic testing for that reason, it is anxiety inducing. Deep breaths and happy thoughts!

J & A together for 6 years love.gif married since 11/09 & so in love with our DD, Reed Kylie born 2/5/11! stillheart.gif
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#6 of 15 Old 07-29-2010, 06:20 PM
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With my son, my number was 1/160 for Down's. I was 28. I went for a Level 2 Ultrasound to check on things and from the u/s they said they were almost certain there was no Down's. When he was born, no Down's. That test can be frustrating and crappy. Plus I think they had messed up how far along I was, that in conjunction with the results raise false red flags. This time I didn't even want to bother with that testing, but the nurse is strongly suggesting that I do, so that if there was a problem, we could be on top of it for the baby's health and safety.

Mom to a girl 7.17.07 and a boy 5.30.09 Wife to husband 8.12.81 (ha) New baby boy 3.09.11 stillheart.gif
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#7 of 15 Old 07-29-2010, 06:24 PM
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Did you know that 90% of people who find out they may be carrying a baby with down syndrome terminate? The testing is really so inacurate.

I had no testing done. I wouldn't have done anything with the information other than worry. We have a DD with down syndrome, we had no idea. It never even crossed my mind. My odds are 1 in 100 now, but our second son is typical and I never even thought anything otherwise would be the outcome.

I wouldn't have wanted to know before hand. Some people like to have all the information just in case. That is what I would think on, what will you do with more information?

While having a child with down syndrome can be a challenge, my other sons are a challenge too. Remember God won't give you more than you can handle. I never dreamed I could handle a child with special needs, but my DD is doing just fine.

Good luck with your decision! Blessings to you.

DS1(12), DD(7)blessed with T21, DS2(2), and DD2 - newly arrived 1/28/11
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#8 of 15 Old 07-29-2010, 06:45 PM
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Those are great results. I wouldn't worry at all. And for what it's worth, I think them suggesting more testing under a 1/1000 risk is just their way of extra billings...
I've never heard of that and this will be my 3rd baby born after the age of 35.

Michelle, Mama to ~ F (10/06) ~ S (7/08) ~ H (2/11) ~ B (11/12)
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#9 of 15 Old 07-29-2010, 09:34 PM
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I'd tell them to take their tests and stuff it. Of course, I'd have told them the same for the NT scan. When it comes down to it, there are 2 sides: 1. if you had a baby with trisomy 21, you'd want to abort, in which case you really should cut to the chase and get CVS (chorionic villi sampling, which can be done earlier than amniocentesis) ASAP to know for sure. Or, you wouldn't, in which case why stress yourself with all the tests?

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#10 of 15 Old 07-29-2010, 10:12 PM - Thread Starter
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Hi Everyone,
Thanks so much for all your reassurance and kind words. I spoke to a lot of family and friends and sought a lot of feedback online, and I'm feeling much better.

Honestly, when I look at it rationally, my risk is pretty [email protected] low. I think the real problem was the initial scare of being told "we recommend more testing." Not to mention, I've been extremely hormonal lately and I can burst into tears at the simplest thing, so of course this news instantly set me off! But after having some time to think about it, I'm feeling a whole lot better and a whole lot more "sane."

Ravin & chrfath - I don't think I could terminate at this point--I'm already so attached! But I do think it would be helpful to be prepared, if I needed to be. You know, seek out support groups and special care info and stuff. chrfath - I really appreciate your unique perspective. Your DD is lucky to have you!

- I agree with you about the docs and all the testing. And I found out that a friend also saw this perinatologist because of a risk of pyloric stenosis, and she said the doc was like "oh everything is fine, but come back again in 4 weeks." And he told her that twice! So, yeah, they may be a little test happy in this office.

Babina's Mommy - Thanks for sharing your story. It was very reassuring to hear!

burg - Thanks, I like your visualization exercise!

Mrs.Mama & Nintendork - thanks again for your support and quick responses.

Thanks all, I'm feeling a lot better.

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#11 of 15 Old 07-29-2010, 11:30 PM
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I had a NT as well and my measurement was 1.0...she said that they start to worry at 3.0. 1.7 sounds just fine. I would play 1:710 odds any day of the week.
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#12 of 15 Old 07-30-2010, 03:11 AM
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I know nothing about numbers but here are some thoughts: I won't do any testing that will affect the baby. As long as they're doing blood work on me, fine. And I do ultrasounds (which I know could affect the baby, but I mean that I avoid tests that are definitely disruptive to the baby). I wouldn't abort no matter what, and I only care to know about anything that would affect the baby's immediate health after birth, because then we could be prepared for that. Anything else I think is more anxiety inducing than helpful, and I believe serious anxiety is more likely to affect the baby than your chances of having a baby with Down's, KWIM? In your case, your odds seem great, and since whether or not the baby did have Down's wouldn't affect his or her healthy birth, I wouldn't bother with more. But I think the real answer can only be given by you. If you'll feel more secure doing the testing then do it. It's hard when someone says things like that which are guaranteed to make you worry. Hugs!
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#13 of 15 Old 07-30-2010, 08:34 AM
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I had the test, before NT was around, and it was positive. Not sure the numbers but HIGH and I was 20 and was super low risk before-1st baby. I refused a animo about the only option then for being sure. My doc made a huge deal about how I had to have the test and I was risking the baby cause I needed to know and how the m/c rate was so low from animo that if I did it was meant to be and something was wrong with the baby.
I worried off and on through out the preg but refused the animo. After that I just refused the test since I knew I wouldn't do an animo. I would have changed doc but I was so far no one else would take me. I moved 3 weeks after I had the test and the results took 6 weeks(where I was) and then took forever to catch up with me too so I was almost 30 weeks when I got the results.
My oldest is fine at lest in this way, she has none of the issues they test for.

Michele, wife to my soul mate, hero and solider, momma to
K-03/98, B-01/00, D-03/02, M-09/03, TL-12/04, TM-09/06, I-10/08 edd 02/02/11
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#14 of 15 Old 08-01-2010, 01:06 AM
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I don't know the numbers, But I know three people who were told they would defiantly have a DS baby.

First was my cousin and the only reason she probably didn't terminate is because she lives in Texas. She actually went back to school/ changed majors to special ed when she found out. She had a perfectly typical little girl (now 13)

Her sister had the same result and just ignored it.

We had someone whose sister (who lived in CA) at church who we prayed for for months because she was told the baby was going to have DS and probably many health issues. Perfectly healthy little boy.

I know this is anecdotal, but its made me never want to trust those tests.

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#15 of 15 Old 08-01-2010, 11:28 PM
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I am 29 and my tests came back positive also.
I have a 1-31 chance of DS.
1-76 chance of trisomy 18.

I think your numbers are pretty good actually, but for my own peace of mind I had an amnio on Thursday, still awaiting the results.

Amee + James (1998) = Amethyst (2002), Asheby "Bear" (2006), Abbott (2011), Atlas (2013), Astoria (6 July 2015)
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