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PLEASE HELP - FIRST TRIMESTER SCREEN
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PLEASE HELP - FIRST TRIMESTER SCREEN

I am 40 years old and pregnant with twins, conceived through IVF.  We did the first trimester screening test (blood test + nuchal thickness) and the results came back with a risk interpretation of 1 in 5 (20% chance) that one or both babies have Down's.  Needless to say, I am devastated.......but we would not terminate the pregnancy simply because the child/children are disabled.  I was told that the accuracy of the test drops from ~83% to 70% when one is carrying multiples, because they automatically assign the "higher" risk to both babies.  However, I feel like I just have to know............to prepare.  We are meeting with a genetic counselor on Thursday, and I have secured an appointment to have the CVS testing done on Monday............but am still on the fence with that.......if anyone has any experiences similar to this, I would greatly appreciate hearing about them..............We have one daughter, who is five, who is perfectly healthy.  We want so badly to tell her, but have continued to refrain for fear of an early miscarriage (I am now 12 weeks as of tomorrow) and now this.......thanks a million!
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164559_tn?1233711618
I have no advice, just wanted to send you prayers and warm wishes.  If you will keep the babies no matter what, I wouldn't put myself through invasive testing.  I am almost 40 and am in my first trimester as well.  They will be trotting out all the tests to me any day now...

Nuchal translucence can be wrong....
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Avatar_n_tn
What do you mean NT can be wrong...........and I didn't think that the NT was "out of range".........it was 1.8 mm and 1.9 mm, respectively..........which I thought was in the "normal" range..........
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164559_tn?1233711618
I misunderstood you, I thought you were concerned about the risk factor they gave you....
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Avatar_n_tn
Hello...my sister was also told her child had downs (the were 810% sure of this) when the baby caome out.......he was PERFECT!!!! there have been several stories on this site where women have been told that their unborn baby would have downs, but when the child was born they were fine. I oppted not to have the tests done when I was pregnant just because I have heard so many horror stories.
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159354_tn?1286371288
I too do not have any words of wisdom but I am praying for you and GOD BLESS you for wanting these babies regardless.

GOD has blessed you and I pray that the babies are healthy and you have a healthy 9 mos.
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Avatar_n_tn
you women are great...............the person who wrote that they were "810%" sure that her sister's baby had Down's......was it really 810%????
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Avatar_n_tn
Sorry..it was 80%....she had to go through consuling and everything.
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130047_tn?1210285144
Your numbers are well within the normal range.  Mine was 1.5 and I am 17 weeks now.  I would skip the CVS and do the amnio (less risk isn't it), only on the basis that you are 40.  I am sure everything will be ok.
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Avatar_n_tn
Okay I have a question. Lets say you do the test and it comes out positive, how will you prepare your self for a child with downs? For me I would rather not stress about it during my pregnancy so i didnt take the teats. I knew if something was wrong with my child I would love it and take care of it no matter what, so what would testing prove. Just a comment i know its different for everyone.

My best friend had the test done and everything came back fine, and when she delivered her son...he had downs and is now 9 years old.

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Avatar_n_tn
The numbers for the NT change depending on exactly where you are when you have the test so I don't feel like anyone here can say you are "normal" or not. They multiply your NT score by your blood scores too and then by age factor so even if NT is normal the blood might be reflecting some other correlation (.  

If you are definitely keeping babies I would strongly advise AGAINST the CVS--it has a much higher loss factor (1:100) than an amnio a little later and timing doesn't really matter does it because you're not going to terminate. Therefore the most important thing is to do the safest thing for baby. Read up on the cvs--it has some nasty things associated with it (limb loss etc.)

Amnio too has a risk so realize by having to 'diagnose' right now you are raising your risk (1 in 200-300 amnio end in m/c).  I am 43 and got a 1.17 at 12 weeks 2 days. I got a 1 in 395 ratio and therefore changed my mind about amnio (I'm about where I was when I had DD and DS at around 34). The doc said at 16 weeks they have a whole list of "soft indicators" in the Level II U/S that can show Downs or not (areas they examine in the U/S). THAT test is totally safe and you can at THAT point still decide to have an amnio. I don't mean to tell you what to do but if you really don't want to run any risk (esp. with the false positives), I'd hold off there. BEST WISHES TO YOU!
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Avatar_n_tn
First off Congratulations on your two blessings!  I have gone through four IVF/FET within 2 years.  I got preggo on my third attempted with Identical twin girls.. at 9 wks pregnant they saw a cyst on the back of one of my girls and since than my entire 24wks that I was pregnant with my girls all I did was worried.... They did so many tests, so many weekly u/s.. Only one of my girls had turner syndromes and the other one was perfectly fine.  Well, the doctors had told me that if my girl with the Turners were to pass away that my other girl would survive.  Well, at 23wks when in for my weekly u/s and both my girls didn't have a heartbeat.  All the doctors told me was that they didn't know why both had died, that maybe my other baby wasn't strong enough.  By me telling you this, just remember that just because this doctors have degrees and everything, they still don't know what can happend with your unborn child.  They can tell you one thing, and when something different happends they will not have an asnwer for that.  I have read so many stories of how pregnant women were told that the test for down syndromes had came back positive and when they had their babies they were perfectly fine.  I know of this women that has two sons now, and one has down syndrome and the other one is ok.  Well, she was told that her son that has down syndromes was perfectly healthy and when she had him they saw that he had downs syndromes, and when she was preggo with her second son, they told her that her son was going to be born with down syndromes and she was not worried or anything since she had already been blessed with one son that had it, well when she gave birth her son was perfectly normal.  
Just go by what your heart tells you to do.  You and your husband have decided to keep the babies, so just enjoy the rest of your pregancy and just wait for the arrival of those two wonderful babies that are going to fill your life with joy!

GOD HAS BLESS YOU and DO NOT DOUGHT HIS ACTIONS!

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Avatar_n_tn
Thanks for sharing your experience and hope with me.  I am such a "type A' personality.........I worry about everything, and this is driving me insane, regardless of the fact that we have decided to keep both babies..........
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Avatar_n_tn
I know how you are feeling.  Well also the doctors can have you do 1000 type of u/s (a black and white screen that doesn't say anything), blood test, tissue..what ever, but they cannot be 100% sure of what they are diagnosing the babies with until they are born and still may have to have the babies do more actual tests.  It will be a year in Dec. 9 that my DH and I lost our precious girls.  My husband had lost all hope of wanting to go through another treatment because of all the physical and mentally stress you go through, but he surprised me on sunday and told me that he wants us to try again because I am the woman that he wants to have children with.  I am so happy right now.  I am almost 33 years old and he is 26. We have been together for 6 years, and yes we have gone threw our moments and saying that we don't want to be with each other, but later we realize that we cannot function without the other in our lives. I have Endometriosis and because of it I have had my Tubes removed, had about 5 laporascopy surgeries to drain cysts from my ovaries. I have not giving up on the idea of holding my child in my arms and loving it for the rest of his or her life.

I belong to a group of woman that have actually had babies with Turner Syndromes, and I am happy to know that a lot of little girls have been born and look beautiful and healthy.  I met a couple of moms in there that actually had twin girls that only one of the twins has the syndrome.  

Good Luck with everything and please keep us posted!



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Avatar_n_tn
Hi everyone:

I had an AFP4 test (the quadruple screen test) at 17 weeks. 36 y/old and dr wanted me to get an amnio but because of the risk of miscarriage, I chose to do the blood test first. The test came back positive and I was told my chances that the baby had Downs went from 1 in 177 to 1 in 46! When they delivered the news, the genetics counselor made it sound like a death sentence. My risk went from 1/2% to 2%. What they don't say, is that the chances of your baby NOT having DS is 98%.

As a result of the positive result on the marker test, I did decide to do the amnio which came back 100% clean. My advice: Don't let the results on the screen test stress you out - I spent two weeks (as did my husband) anxiety-stricken over NOTHING. For me, though, it was still worth it to do the amnio, I wanted to know so we could plan ahead of time for a child with any problems. The peace of mind of knowing now is what I needed.

If you get an amnio, my advice is to try to find a perinatal center that specializes in them, even if you have to go further to find one. The more they do each day, the better the technicians and the doctors are at working together to do the amnio properly. I live in San Francisco, CA and the center there that did my test has a rate of 1 in 10,000 miscarriage not the national stat of 1 in 200. Don't be afraid to ask them what their stats are and BE PUSHY.

I have a friend in NC who had her OB/GYN do the amnio and she miscarried. May be superstitious but I think asking how many amnios your doc or center does is important. Educate yourself so you know you've got an expert performing the procedure.

20 wks pregnant with a boy.....best to all pregnant moms on the board!
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