triple screen test

[Jackie]

Hi guys....got our move half way done...in a smallish corporate apartment working on a new home deal....but....I have great need at the moment.

My niece who is 31 and pg for the first time...found out today that her triple screen came back positive for DS. Needless to say she is most concerned...even tho all the web info confirms the high incidence of false positives. Unfortunately the level 2 ultrasound cant be scheduled until Sept 2 so for the next two weeks she will of course assume she is having a baby with DS.

I have a wonderful pediatrician here who was my neighbor and has a two yr old with DS herself ready to counsel my niece and her husband. She has the warmest personality and I think will be able more than anyone to put their minds more at ease. I am just wondering if any of you could give me some more information? I have read every last site I think on it...and most really say the same things.

I think my sister and niece also feel a bit guilty about being so upset after they have been so positive about Emily all these years...I have told them I have tough skin....its normal to grieve...and its also easy to be supportive because at the end of the day you can always go home and think...."its not me that has to deal with this." She is about 20 weeks along. I also imagine her OB who does know she has a cousin with DS....however does NOT know that Emily is Trisomy 21 rather than any other form that might make my niece more at risk genetically.

If her ultrasound shows markers then I will certainly refer her here .

Jackie mom to Emily 24

[shellk]

I have never believed in that test....Mine with Kourtney came back negative...And Kourtney has DS...A really good friend of mine just had her daughter a week ago and her test came back as positive and her daughter was fine..My OB when I was pg with my son told me that the triple screen tests cancome back with false findings...Hope all goes well for your niece.

Hugs to her

Michele

[Cbean]

Hi Jackie:

I remember this crazy test from when I was pregnant with my son. Immediately prior to the test they warned me not to get upset as there were a lot of false positives from it. My thought was well then why are we doing it? This pregnancy, an entirely different experience, I didn't have it done, b/c I went from Nuchal and a new blood test right to an amnio. I decided that I did not have the nerves to guess for the following 4 months. Look where I wound up, but I am so glad that I did it. (I swore I was never going to have an amnio- hahaha!) My experience with my Level II was that I was having a perfectly normal baby. In fact no markers showed at all. In fact the doctor was going on and on about how positive everything looked, that I almost didn't have the amnio, which was already scheduled to immediately follow the level II. Then I get a call 10 days later that changed everything. Could you imagine if I didn't do that amnio that day??? I'm not saying I'm an advocate for amnios b/c they're invasive, but I think you need to evaluate what type of personality type you are. I couldn't live with the risk factors and percentages and the guesswork. One minute i was 1 out of 19 yet I had a 95% chance of having a "normal" baby. It's kind of sick if you think about it - and it's all I did. I would have driven myself and everyone around me insane if I didn't know. I didn't mean to share my experience to upset, just to inform. Having just been there I feel for your neice and feel free to contact me if I can share my experience more with you or her. Look how lucky I am - I know, I'm here and with the help of so many wonderful people here, I've not only cut my grieving time in half, but now I'll be so prepared when my bundle of joy arrives. Of course she won't have a name, but that's a whole other post!

My prayers and thoughts are with you both,
Christine

[ALLISA]

The same exact thing that Michele posted happened to me, my test was neg & my best friend (preg at same time) had a positive and her baby is fine..... stupid test....shame on her docs for not getting her the ultrasound earlier, that is a long time to wait & worry.

Of course you understand their concern and even though we love our children, it doesn't mean we want all children to have DS !! LOL

I personally wouldn't want your friend to counsel them just yet.... if they knew for sure that the baby had DS, that is different... but right now.... they don't want to hear chipper stories of DS...... nothing against Emily or any of our kids, but they are just praying their baby doesn't have it ! Who could blame them ??

My recommendation would be for her to PUSH and demand an ultrasound. Then you can go about counseling and advising, but until they know for sure, any advice is probably going to fall on half-deaf ears.... because they are hoping they won't have to listen & heed your advice.

Best of luck to her & her new little family... keep us posted !!!

[Jackie]

She is calling to day to see if they can possibly move up her date of ultrasound or at least put her on a cancellation list. Trust me.....talking to my reassuring friend will help them...it wont be a talk about stiff upper lip or joys of DS...this is the pediatrician they were going to interview anyway....and she has a very warm nurturing manner. Having grown up with Emily almost her whole life...my niece knows the "joys" of DS....LOL....she has always been a good friend to Emily and she and her hubby have for years frequented the parties Em has had so know the whole cast of characters in our lives.....but...as you all know....walking a mile in THE SHOES is much different than being a supportive observer. I am copying the above emails to share with MY sister if needed...thanks.

Jackie

[Evans Dad]

Jackie

Jen and I did a lot of research on this at the time they asked us if we wanted the test done for Evan. We chose not to have it and it was later tests that discovered the DS.

The triple screen test is a little different than the regular AFP test that is more common. The triple screen measures not only AFP, but hCG and estriol as well. This test is more accurate and screens for additional genetic problems. We were told at the time we were offered that this was starting to replace the standard AFP test.

We were also told that an abnormal triple screen reading did not mean that the child would be born with some abnormality or chromosome defect, rather, an abnormal triple screen indicated that the fetus should be evaluated further. I guess not going through this I can't offer any good thoughts.

Sounds like you (Jackie) may be a good support for them, most of us experienced that waiting period, I know Jen and I did when she had an amnio at 30weeks (instead of the nornal 18-20wks), we only had to wait 72 hrs and it seemed like a lifetime. After our research the amnio was the only test we felt confident in, after markers had been identified in our level 2 tests, and we were consulted about doing the amnio.

I guess there is always a chance of a false positives,and false negatives that is why there is a need for more tests.

Hope all goes well, either way I hope they are excited about having a new addition to the family.

Clint

[momofrussell]

I wasn't offered the triple screen with any of my pregnancies. I declined the AFP with Regan and Russell. But.. with Russell, the lab goofed and gave me my AFP anyway... With Reece, I did have the AFP for the heck of it LOL.

I am one of the few that have actually had an ACCURATE AFP My AFP came back positive for DS and when I had my Level II US, it also showed markers for DS and the doc knew right away that Russell had DS, even before we did the amnio. Which confirmed it

I wish your neice the best! I hope they do "up" her US date... that will help take the edge off!

A.

[Debbie]

Jackie,

I wonder if it would help her to come on here anyway and read the responses for you and her? You did say that you were copying them for her didn't you?

I doubt I could say anything different than what has been offered here. Since I am not a parent, it may not be a good idea anyway.

I wish for once that I did not have Down syndrome and that I was a parent but unfortunately I can't do that. I have grown up with having Down syndrome and I can tell about my experiences but that does not take away the uncertainty and fear for her. Only you and your friend can help her and advise her.

She is in my prayers as I am sure that she is in all of those here.

Where do she live, Jackie? There may be a group of support for her there.

[PaigesMom]

You know, those tests are only "screening tests" - the pregnant mom compared with other pregnant people in certain age groups and you are right, they are so falsley positive - and falsley negative.........

As in my situation - I had a normal triple screen, and SIX level two ultrasounds during my second and third trimester of pregnancy with Paige and not once did a marker come up.

The only true way to tell is an amnio or a CVS but she's to pregnant for that test.

I wish her and you all the best of luck!!

Debbie

[Jackie]

Thanks for all the advice....I really appreciate it. I think the shock is wearing off and everyone realizes it now just wait and see until we get the ultrasound out of the way. My nieces hubby is back to his usually cheery self saying things...like..."lots worse things than DS"....

And you know...this baby either has it or it doesnt....just like its either a boy or a girl. None of these tests will change that fact....and Live WILL go on.

Debbie C....she lives here...you have met her....and she is going in to visit with Sherri.......Jackie

[Jackie]

Can someone tell me if an amnio can detect more about a fetus besides genetic things. How about info on things like organ development....etc.

Jackie

[Cbean]

Hello again Jackie!

Check out this link...one of the more detailed descriptions of amnio's that I've found:

www.modimes.org/professionals/681_1164.asp

[steffipoo]

you guys!!!! I found this old post cause I am looking into my genetics report which states my triple marker screen was reportly low and yet amnio or any other further testing was not indicated. Now when I callled and talked to the doctor after my tests they said everything was normal. . I'm really having a hard time with this. Not that it woulda changed any decision with Olivia but my healthcare was just weird and after Livs birth(I did not know till she was born) all the obgyns avoided me like the plague. Now I am thinking I know why... Just totally uncomfortable that they gave me wrong info and could have saved me a lotta heartache for the first 4 months after her birth. I guess the heartache woulda just started at less than 5 months ratjher than after birth. This is bugging me out. I'm gonna try to find the co. today and at least see if the results were so obvious( cause maybe I coulda been not too low on some and not too high on the estriol etc. But dag nabbit I wanna know.Gotta go HUGS Steff