Bad news 1 in 127 for downs

Bad news 1 in 127 for downs

Teresa
Teresa

July 10th, 2012, 6:28 pm #1

Dr spoke to my husband and told him this. I haven't called her yet. This does not sound good.
I am sick.
What do I do? She told my husband that she wanted to do one more test he didn't specify what it was...
I was excited at the 1.1 measurement...
Crying and stuck in a meeting for a pt job I just took. I am beside myself in the bathroom.
Help!
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Mrs. A
Mrs. A

July 10th, 2012, 6:49 pm #2

I know you won't believe it and you need to do whatever is going to bring you peace. BUT the NT u/s is so important. Please know that. Yes it is true that it is not definitive but it is an EXTREMELY GOOD indicator.

Btw, did you see Tanya's post below. She had worse odds based on the intial screening. I can assure you her baby is GORGEOUS and HEALTHY and PEFRECT every which way!!!

Have you met with a genetic counselor yet? You need to understand what these numbers mean and also have a clear understanding about how your age affects the numbers. Do you know that when they do these odss they base them on your age at time of DELIVERY - not at time of conception. For me I was basically treated as a 40 year old because I was due one month before my 40th. yet I conceived only 2 months into my 39th b-day.

Speak to a genetic counselor regardless of whatever test your OB wants to run.
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Laura
Laura

July 10th, 2012, 6:57 pm #3

Dr spoke to my husband and told him this. I haven't called her yet. This does not sound good.
I am sick.
What do I do? She told my husband that she wanted to do one more test he didn't specify what it was...
I was excited at the 1.1 measurement...
Crying and stuck in a meeting for a pt job I just took. I am beside myself in the bathroom.
Help!
Sorry for that news, it's understandable that you're so anxious, having a hard enough time already.

I remember you said you're turning 40 soon, right? Because the risk of DS for women at 40 is 1/100 anyway, so this result just means your additional blood tests were not super-conclusive. I would put more stock in the NT measurement at this point, since it's physical evidence to the contrary. I think there are additional levels of testing that can be recommended by your OB before you have to decide amnio or not. For now, just take care of yourself the best you can, ok? And congrats on the new job! Hopefully that will ease your financial strain a bit.

http://www.marchofdimes.com/pregnancy/t ... ter35.html
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Teresa
Teresa

July 10th, 2012, 7:03 pm #4

I know you won't believe it and you need to do whatever is going to bring you peace. BUT the NT u/s is so important. Please know that. Yes it is true that it is not definitive but it is an EXTREMELY GOOD indicator.

Btw, did you see Tanya's post below. She had worse odds based on the intial screening. I can assure you her baby is GORGEOUS and HEALTHY and PEFRECT every which way!!!

Have you met with a genetic counselor yet? You need to understand what these numbers mean and also have a clear understanding about how your age affects the numbers. Do you know that when they do these odss they base them on your age at time of DELIVERY - not at time of conception. For me I was basically treated as a 40 year old because I was due one month before my 40th. yet I conceived only 2 months into my 39th b-day.

Speak to a genetic counselor regardless of whatever test your OB wants to run.
I just spoke with her. I turn 40 on August 7th. Conceived at 39.8 39.9. She told me based on my age Alone i have 1 in 83 chance She said 1 in 127 isn't glowing report.
Dh and I had lots of genetic testing when we went to our first r e appt. fragile x cystic fibrosis etc. all came back normal. But now she told me to go to a genetic counselor. She gave me the number I called of course no one is there.
Im stuck 150 miles from my husband and. Can't stop crying. We just announced to everyone the other day. Now this dark cloud.
She mentioned the maternal 21 test or whatever it's proper name is.
I am numb. I can't think. I'm stunned.
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Mrs. A
Mrs. A

July 10th, 2012, 7:14 pm #5

to go to a genetic counselor FIRST. Personally, having been through this myself, if at all possible I would always advise to see a genetic counselor FIRST before undergoing the NT scan and triple screen. Because you need to have an understanding of how these odds actually work. The blood screen is checking maternal serum levels. And making determination about your baby based on that. The triple screen test can't make any determination about your baby directly though since it's your blood being tested. Hence why CVS and amnio are offered. I don't recall at this moment but you may be getting passed the window of being able to do a CVS - if that is something you'd consider. An amnio may be your only option now. Your OB should have had you see a counselor early on so that you could discss these options with enough notice to proceed. For now, just make that appointment with the counselor a.s.a.p.

I'm not familiar with the test you mention but maybe it's something new. I know I recently saw something on the news about being able to detect Down's as early as 8 weeks. So maybe that's it.

There are women on here younger than you (even odler) with worse odds who have gone on to have healthy babies. Don't let these odds get you down. Think of it this way. These odds say that if there were 127 babies lined up, 1 of them might have Down syndrome. You have 126 "chances" of NOT having a Down baby.
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jkl
jkl

July 10th, 2012, 7:22 pm #6

Dr spoke to my husband and told him this. I haven't called her yet. This does not sound good.
I am sick.
What do I do? She told my husband that she wanted to do one more test he didn't specify what it was...
I was excited at the 1.1 measurement...
Crying and stuck in a meeting for a pt job I just took. I am beside myself in the bathroom.
Help!
I just got my results back a few weeks ago and got 1:209 for DS so I have been freaking a bit and researching. So the weird think is for me, this did not flag as a high risk, which surprised me because I thought it was around 1:300 (I just turned 42). I found a paper where they are finding that as you get older the detection rate goes up but so do false positives. So 1:100 is not as bad if you are older as if you were 25. So I looked at this paper and basically nobody had a ds (in the 40-42 group) child unless their results were below 1:100 (and many in that group did not end up having a ds child). So basically they were recommending droppng the high risk category for older women to below 1:100, which would put you outside that category.

Not sure if this makes any sense to you but I think you should talk to a genetic counselor about it. I can give you the reference to the paper if they haven seen it, or emil it to you. The OBs don't understand it, in my experience. The genetic counselors are very trained in this stuff and also trained to explain it. So obviously this is not the best results but the odds are very much in you favor that your baby won't have ds.

You OB may want you to do the 2nd tri screening. I am leery of that test because it has many false positives, and may just freak you out more.

jkl
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jkl
jkl

July 10th, 2012, 7:26 pm #7


I have heard about this, basically they can detect some fetal cells in your blood so it's completely non-invasive. I don't know how accurate it is but that is something you may want to talk to the genetic counselor about. Let me know if you find more about it. Also, i think it is considered experimental so insurance might not pay for it. GL

jkl
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Whitney
Whitney

July 10th, 2012, 7:37 pm #8

Dr spoke to my husband and told him this. I haven't called her yet. This does not sound good.
I am sick.
What do I do? She told my husband that she wanted to do one more test he didn't specify what it was...
I was excited at the 1.1 measurement...
Crying and stuck in a meeting for a pt job I just took. I am beside myself in the bathroom.
Help!
There is a new blood test that just came out recently to test for downs and it is a yes or no answer, but some insurance company's will not pay for it. My girl friend had it done when she came back 1 in 50 for downs and I think she said it takes two weeks to get the results.
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Teresa
Teresa

July 10th, 2012, 8:03 pm #9

I just got my results back a few weeks ago and got 1:209 for DS so I have been freaking a bit and researching. So the weird think is for me, this did not flag as a high risk, which surprised me because I thought it was around 1:300 (I just turned 42). I found a paper where they are finding that as you get older the detection rate goes up but so do false positives. So 1:100 is not as bad if you are older as if you were 25. So I looked at this paper and basically nobody had a ds (in the 40-42 group) child unless their results were below 1:100 (and many in that group did not end up having a ds child). So basically they were recommending droppng the high risk category for older women to below 1:100, which would put you outside that category.

Not sure if this makes any sense to you but I think you should talk to a genetic counselor about it. I can give you the reference to the paper if they haven seen it, or emil it to you. The OBs don't understand it, in my experience. The genetic counselors are very trained in this stuff and also trained to explain it. So obviously this is not the best results but the odds are very much in you favor that your baby won't have ds.

You OB may want you to do the 2nd tri screening. I am leery of that test because it has many false positives, and may just freak you out more.

jkl
Got appt and m going tomorrow at 8 am. Genetic counselor. I can do cvs tomorrow if I decide but I'm not thinking straight
Why was I given all those blood tests for tris 18 cystic fibrosis etc etc and they came back normal ? What did those good results mean then?
I'm still numb. It's very hard thinking positive at this point. I'm so angry this is happening to me. I hope that's not offensive to anyone we have all been through a lot but this is really hard.
I can't drive home yet I'm in a really bad place. Thinking of booking a room and waking up early to drive home I have the counselor at 8am and I'm sobbing on and off. I'm so scared. Sorry for typo
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Teresa
Teresa

July 10th, 2012, 8:04 pm #10

I have heard about this, basically they can detect some fetal cells in your blood so it's completely non-invasive. I don't know how accurate it is but that is something you may want to talk to the genetic counselor about. Let me know if you find more about it. Also, i think it is considered experimental so insurance might not pay for it. GL

jkl
Im wortied snd undure as to whether I should do C v s of not
This iPhone is going to be the death of me
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