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Thread: Has anyone ever been pregnant with a down syndrome baby?

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    Default Has anyone ever been pregnant with a down syndrome baby?

    Hello everyone. My friend called me the other day very scared. She had this test done, not sure what its called..not the AFP, but something else, because she is 38 and 13 weeks pregnant. Well the test came back that she has a 1 in 47 chance of having a downs baby. The one thing that was very differen than her other pregnancies (this is her 7th) is that she had very early morning sickness. When she first told me, my guess was that she had maybe more than one. Of course she didn't know her hcg like us surrogates do. Now the doctor is saying that her level of hcg at 13 weeks is much higher than the normal pregnant woman. They did an ultrasound and there is definitely only one. She read that women with higher hcg are usually carrying a downs baby. If you have been pregnant with a downs baby, did you get sicker in the beginning or were your levels of hcg higher? Thanks ladies!
    She is getting an amnio in 3 weeks, but is going crazy with worry.

    I delivered! Baby Boy 8lbs.-8oz. 20 inches long. November 1, 2010 at 7:45 p.m

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    riverwalk is offline resident OCD dirty movie freak w/ a side of old fartness, slightly crusty. I am so old I fart dust!
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    that test is frequently wrong. She should insist on the amnio NOW. Why wait three weeks?

    The same thing happened to me , my test came back positive. There are frequent false positives. Id bet a million bucks this is the AFP she had- sometimes they call it a quad screen or a triple screen. There is nothing else that would tell her answers like she is getting. And "usually" carrying a downs baby is highly inaccurate. Beg her to stop reading stuff!

    They can also do an ultrasound to determine if there are any downs features in the child. Its not as accurate of course as the amnio.
    There is no reason to wait for the amnio. If she is 13 weeks NOW, and waits three weeks, and the amnio can take 2 weeks to have results, she's looking at at 18 week fetus- would she terminate? We decided not to, regardless of any tests, and I refused the amnio as it was.

    I know how she feels, but trust me, and there are threads about this very test being wrong- the test is frequently inaccurate and her morning sickness could just be that- she's barfing.

    My money's on the kid- I think SHE's (my prediction) is going to be just fine.

    andi
    Last edited by riverwalk; 01-11-2010 at 06:54 AM.

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    SurroMomTera is offline GS x 1 to TRIPLETS! <3
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    Totally agree with Andi!!! Those tests DO come back frequently as being "positive".

    In fact, when my IM's first surro was pregnant with their now (perfectly fine) 4 yo, the test came back as the baby having Trisomy 18. They elected to do the amnio, and it came back fine.

    I've never heard of high HCG levels having anything to do with DS, but I've never looked into that either, so I can't help you there.

    Wishing her the best :)

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    The quad screen/triple screen test is just a screening. It's not diagnostic. Most women with abnormal results (including me) have perfectly healthy babies. I'd urge her to not assume anything until she has amnio results.

    Thanks akamom!
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    Count me as someone who had the false positive triple screen for DS.

    We just did a level II u/s at 15 weeks. Baby had 0/7 markers for DS so I skipped the amnio.

    Yeah, why wait 3 weeks for an amnio?!? Is this just due to dr scheduling? If so I'd try to find a way around that! Could they at least do a level II u/s now to look for DS markers and give her some peace of mind until the amnio?
    Jennifer
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    I'm guessing she had a nuchal translucency screen, combined with the AFP bloodwork. At this point, the only way to know for sure is to go on and get the amnio. When my hCG numbers were so high in the beginning of this pregnancy, I did a lot of research about what it could indicate, and one of the things I did fine was that later in the pregnancy (where your friend is now), high hCG levels can indicate a chromosomal abnormality (like Down's). It's certainly no guarantee and even at 1 in 47 odds, that's only a little over a 2% chance.

    My best advice to her is to trust in the 98% side of the equation as much as possible. But there's no way to keep from worrying. I wish the very best for her and her family.

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    We skipped the amnio, too. The u/s showed a perfectly healthy baby with no markers.

    It think 13 weeks sounds a little early for the quad screen, though. It's usually done between 16 and 18 weeks. Maybe she had the nuchal translucency screening done instead. If so, it's still just a screening test. In order for a screening test to catch the highest number possible of problem pregnancies, they also have to pull in plenty of perfectly healthy pregnancies. I know it's impossible for her to not think the worst right now, but there is no reason to assume this baby has DS.

    Thanks akamom!
    ~ 10/09 5dt of 2 fresh embroys ~ chemical
    ~ 03/10 5dt of 3 fresh embryos ~ m/c @ 5w5d
    ~ 07/20 5dt of 4 frozen embryos ~ m/c diagnosed @ 5w6d

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    It is definitely too early to do an amnio. Most doctors require that you be AT LEAST 16 weeks, which is why she would have to wait another three weeks. She could, however, get CVS done, which would have to be done asap, as I don't believe you can do it once you are 14 weeks.

    :grouphug: Good luck to your friend.


    Sibling arrived at 40 weeks 3 days :HEARTSMIL

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    I carried a downs baby. My levels were not much different and I was pg with twins at first and had no clue it was twins when getting my levels. In fact the level was lower than my singleton pgs.lol I had always had bad morning sickness so I can't say if it started sooner or not as it just normal for me and it was twins so who knows. My triple screen came back fine I have had it lower with other pgs. All u/s were perfect until like 24 weeks then they started noticing growth issues. I was then being monitored very closely but not for downs. At 32 weeks the placenta started to tear away and I had an emergency csec. That is when we saw he had downs but his features were very mild and so they had to do blood work to be sure.

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    Add me to the list of people who had a false-positive AFP test. They told me Aiden had a 1/40 chance of having DS. I was a nervous wreck! First, they sent me to Yale for a level 2 ultrasound. When everything looked good on that, I refused the amnio. So they had me repeat the Level2 U/S 4 weeks later to check that he was growing appropriately. Which he was. They changed my odds to having a 1/80 chance of him being a Downs baby. It wasnt enough FOR ME to go through with an amnio, with the miscarriage risk, after having had one previously. I was only 30, too. (DH - 29) and we had no genetic issues. (they also had us do some genetic councelling thing to go over our family history to see if that increased the odds for us) Back then, I had never even heard of a NT scan, so it wasnt available yet!

    My perfectly happy, healthy baby boy is celebrating his 4th birthday today!


    GSX1: Ella Rose 8/7/2011 7lbs 6oz, 19 inches and adorable!!!

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    riverwalk is offline resident OCD dirty movie freak w/ a side of old fartness, slightly crusty. I am so old I fart dust!
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    Quote Originally Posted by cookie View Post
    It is definitely too early to do an amnio. Most doctors require that you be AT LEAST 16 weeks, which is why she would have to wait another three weeks. She could, however, get CVS done, which would have to be done asap, as I don't believe you can do it once you are 14 weeks.

    :grouphug: Good luck to your friend.
    I thought about this after I posted. I think you are right.

    is she SURE she is 13 weeks????

    andi

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    Previous posters are correct about the amnio - I had to wait until 16 weeks to get it done and at 14 weeks I was past the point of being able to get the CVS done.
    I had higher than normal HCG levels as well, which they told me is a possible indicator and the baby did have downs. They had given us a 1 in 108 chance from the first trimester screening (ultrasound and bloodwork), but there were no indicators on ultrasound.
    The geneticist did say (before we had the amnio) that higher than normal HCG levels are pretty common with IVF (don't know if your friend did IVF or not) so it didn't necessarily mean something was wrong. Best of luck to your friend - it is not a fun place to be :(

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    Quote Originally Posted by krissy28 View Post
    Previous posters are correct about the amnio - I had to wait until 16 weeks to get it done and at 14 weeks I was past the point of being able to get the CVS done.
    I had higher than normal HCG levels as well, which they told me is a possible indicator and the baby did have downs. They had given us a 1 in 108 chance from the first trimester screening (ultrasound and bloodwork), but there were no indicators on ultrasound.
    The geneticist did say (before we had the amnio) that higher than normal HCG levels are pretty common with IVF (don't know if your friend did IVF or not) so it didn't necessarily mean something was wrong. Best of luck to your friend - it is not a fun place to be :(
    No,she didn't do IVF. It was the natural way. She is going to the doctors today with two pages of questions. We will see

    I delivered! Baby Boy 8lbs.-8oz. 20 inches long. November 1, 2010 at 7:45 p.m

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    Quote Originally Posted by riverwalk View Post
    I thought about this after I posted. I think you are right.

    is she SURE she is 13 weeks????

    andi
    Yes, Andi, she is definitely 13 weeks going on 14. She was one week shy of being able to get the cvs test done. Her and her husband do the charting, so she knows exactly how far along she is.

    I delivered! Baby Boy 8lbs.-8oz. 20 inches long. November 1, 2010 at 7:45 p.m

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    Quote Originally Posted by riverwalk View Post
    I thought about this after I posted. I think you are right.

    is she SURE she is 13 weeks????

    andi
    Quote Originally Posted by chrismommy View Post
    Yes, Andi, she is definitely 13 weeks going on 14. She was one week shy of being able to get the cvs test done. Her and her husband do the charting, so she knows exactly how far along she is.
    I was going to ask the same thing. We are going through this right now, except that our AFP came back higher than we were told it should have been by our OB so we are on the opposite end of the spectrum as Downs (we are looking at potential nural tube (e.g., spina bifida) and abdominal wall defects (e.g., external intestines). I have researched anything and everything that I can get my hands on in the last week and spoken to 3 specialists in the field. I could not find anything on the web, nor could any specialist tell me, what the false-positive rate for our end of the spectrum was but I read, and they all agreed, that there is an extremely high rate of false-positives on the Downs' end. The most common reason for the false-positive is that the baby(ies) are actually younger or older than mommy thinks they are. In our case, we did IVF with 5 day blasts so we know exactly how old they are. I was told that the gestational age does not always correspond to the gestational size and that can throw off the test. Our babies are measuring about a week ahead in terms of growth so it would have been nice if the lab had taken that into consideration.

    Also, for those of us that have multiples, the results can be quite different (higher AFPs) because of that.

    Question - at what week did your friend have the MS-AFP test done? It shouldn't be done before the 16th week so I wonder if they ran it too early???

    As for HCG, some ladies just produce more.

    The American Pregnancy Association lays out solid prenatal testing guidelines - you might want to pass this along to your friend. It's the only schedule I would follow ~

    http://www.americanpregnancy.org/prenataltesting/

    There is a study that was done a few years back that is gaining a lot of momentum about this particular test. The point of the study is that the results are scaring parents into having unnecessary invasive tests like amnios, CVSs and cord sampling.

    I hope everything works out for your friend.

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