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  1. #1
    shazzie78's Avatar
    shazzie78 is offline Member
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    Default High risk down syndrom hcg levels at nt scan and impacts on later stages of pregnancy

    Sorry about the title I accidently posted before I'd finished and can't change it now!

    This is a question for those of you who had Down Syndrome scares. I had very high risk of DS at my NT scan (1:58) so chose to have CVS done. The results came back clear - no DS for my baby. When we had the genetic counselling before the CVS the genetic counseller said that if it wasn't DS then it could be a problem with the placenta - I had high levels of HCG in my blood. So I had extra scans throughout pregnancy, had the morph scan, 23 week scan and 28 week scan. All were totally fine, baby spot on for size etc. They now want me to have a 34 week scan but don't seem to be able to give a good reason. I decided against the extra scan (I am now nearly 35 weeks) but the hospital are pressuring me to get it, no one can tell me why, except that the dr recommended it at the 28 week scan. When I asked him at the scan why I needed another one when that one was fine he didn't really give me a good explanation, he said because I was overweight I could have a small baby. Now I've heard that the opposite is true, that over weight women can have big babies. My fundal height is showing that the baby is still growing, at 28 weeks it was measuring 31 weeks and at 31 weeks it was measureing 34 and today (at 34 and a half weeks it's measuring 36-38 (depending on which midwife you listen to)).

    So I guess the question is for other women who had high levels of HCG, have you had to do extra scans, was there a growth problem or other complications during your pregnancy?

    I feel that after 6 normal scans having another is silly, especially since I've heard a lot that they are not even accurate for sizing later in pregnancy anyway.

    Any advice?

    Sharon
    Last edited by shazzie78; 26-06-2009 at 05:55 PM.
    Me - 30
    DH - 30

    DS born 21 July 09

  2. #2
    Excited's Avatar
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    Default

    I'm interested in replys too. Sorry no advice as I am still in my pregnancy and in a similar boat. I had 1:69 chance DS and 1 in 33 other abnormalities (forget what they said, cos I decided to be positive about it all).

    However I am week 27 now and will need extra US from week 32, apparently as my PAPP-A blood level was low week 12 and hence could be a growth problem.
    Me & DH + Bub #1 = 3 plus 2 furbabies (staffies)

    Bub#1: Oct 2009
    Bub#2: Little Bean RIP Nov 2010

  3. #3
    JaneB's Avatar
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    I think they want you to have the scan to work out why you're measuring ahead of dates. If you have extra fluid around the baby that can be a problem, if you have a large baby that can be a delivery problem. I guess they want to cover themself come delivery and be ready for your baby.

    Some of the problems they're looking for can occur after a previously healthy scan and can deliver a better outcome if they induce early or opt for a c/s delivery.

    I'm going off things i've read in the past so i have no experience to base it on but personally i'd be taking their advice. I know the sizing isn't accurate but it might pick up something else.
    Me (29)
    DH (30)
    Makayla Anne 3rd October 2007 (41 weeks)
    Natasha Jane 19th November 2009 (37 weeks)
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  4. #4
    shazzie78's Avatar
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    Excited, they didn't mention anything to me about PAPP levels? Did you end up having a cvs or amnio? Don't know about you but I've found they don't really explain things very well which is frustrating, they want to scan scan scan but can't really explain to me what they're looking for. Good luck with the rest of your pregnancy.

    Jane, thanks for the reply but it has nothing to do with measuring ahead of dates, I've been told anything within 4cm either way is normal. The Dr who did the last scan (and left me with bruising I might add) said it was to make sure the baby wasn't too small - one midwife I saw said she didn't really understand either why they wanted to do another scan. I just wish someone would sit down and explain it all to me properly.

    S
    Me - 30
    DH - 30

    DS born 21 July 09

  5. #5
    cjpowell is offline New Member
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    Default NT screening

    Hi There, I'm new to this forum. We are expecting again and as i'm considered older 39 we went for tests, the baby looked ffine and measurement of nuchal fold ok but after low papp-a result put our risk of ds at 1.29,left feeling awful and that there was definately something wrong with baby, am now booked for an amnio in 9 days.Trying to remain positive but am terrified, wish things had been better explained. This baby is very much wanted but hard to enjoy being pregnant.

  6. #6
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    I am having an amnio due to low papp-a results and high hcg levels even though the NT measurement was fine.

    Low papp-a can be indicators of complications mainly due to potential placenta issues but it is all uncertain and as such they chose to do extra scans to make sure baby continues to measure right for dates etc.

    I asked a similar question last week and you'll be surprised how many ladies have had similar problems and have all had fantastic outcomes. Whilst I couldn't see it last week as I was a bit doom and gloom, it's actually really reassuring to know it could all be nothing.

    Good luck with it all.
    Me 35 ~ DH 33
    DS Mr Know it All
    DD Little Ms Scream a lot!

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  7. #7
    Excited's Avatar
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    Hi

    We chose to do no more specific abnormality tests for reducing the risk of DS or other abmormalities. Due to my own (not hubby's) beliefs I would be keeping the baby regardless of the risk and so I decided that the first test was stressful enough I didn't want to stress any more.

    The only thing that placed me at risk was my age and the PAPP-A levels being low. The NT measurement in the scan was normal, the HCG level was fine too.

    My Hubby did some research on medical journals (cos he can) and he found some research that said male age is not taken into account but males contribute 50%. My Hubby is a lot younger and so that reassured us on that count.

    He also found out that at week 12, in the U/S in 70% cases the nasal bone was missing if they had DS. This wasn't taken into account and when we look at the U/S picture we believe the nasal bone is present. That relieved us on the DS risk. Still a risk but in our eyes (maybe naively) we have decided to remain positive.

    The last research he found was related to PAPP-A levels being low. If the mother was doing weight resistant training (and even more so if this has been reduced) and is on a high protein diet then the research was showing signs that the PAPP-A may be low because the mothers own growth hormone levels were high. Well I do heaps of walking (used to go to the gym and do more strenuous exercise) and weekly weights and we have a high protein diet so I decided not to worry about this either.

    Our OB did not want to comment on our findings - guess he didn't want to agree or disagree in case we still had a baby that was abnormal. I did notice he kept my hubby's article re findings in our file.

    So, I won't know the outcome until Sept, however I have had a relatively great pregnancy to date (touch wood that continues) and my intuition believes there is nothing wrong.

    I will still have the Ultrasounds to check growth, just didn't want to do the amino test etc as there was a risk to harm the child and if it turned out to be normal that was a risk I didn't want to take. So up until this post I have stopped thinking about it, which I think is the best thing for the baby anyway. Stress is not a good thing.

    Wishing everyone who is high risk the best of luck.

    Sue
    Me & DH + Bub #1 = 3 plus 2 furbabies (staffies)

    Bub#1: Oct 2009
    Bub#2: Little Bean RIP Nov 2010

  8. #8
    shazzie78's Avatar
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    Thanks for the replies everyone.

    Good luck to those of you awaiting amnio results. Sue, I'm confident your baby is fine too.

    I have to wonder about the stress involved it the 12 week scans you know, from what I have read on here and other posts they seem to stress people more than anything (except of course for those very lucky people who get great results first up!). I know I chose to have all the tests done so I am certainly not saying people shouldn't have them but they really have caused an otherwise perfectly normal pregnancy into a horror for me. The initial upset and stress of the 1:59 result, then the traumatic CVS (I found this proceedure to be awfully traumatic) then we found out the day after the CVS that short term results indicated that the baby was fine however I had some time where I was stressed about whether the proceedure was going to cause miscarriage, then of course the ongoig scans. Incidently I decided to get the scan done last week and everything looks fine (my gut instinct knew it was before the scan but in the end I thought I'd never forgive myself if I didn't get it done and something went wrong).

    Sue, knowing all that I know now (and thank you for your extra research and info too by the way) I think in any future pregnancies I have I will not have a CVS or Amnio either (unless the scan shows a thick nuchal fold or missing nasal bone). If the scan looks fine and it's only the bloods that hightens my risk I won't worry about it. I would love some stats on how many DS babies are accurately detected/diagnosed based solely on blood results (ie. where the scan shows no abnormality but blood heightens risk and baby does have DS) - my guess is there would be very few (but that's just a guess I have no research to back it up).

    cjpowel - if you want to talk I'm available, I wish for your sake things had been better explained to you too, I am no expert but over the course of my pregancy (I'm now 36 weeks) I have managed to peice together quite a bit about this stuff. I found some info last week that states that high HCG levels can be indicators of any of the following: multiple pregnancy, Down Syndrome, placental abnormalities. OR most importantly they can just be normal for some women!!!!!!!!!! I have only been told this bit (about it being normal for some women by one midwife (and I have talked to plenty about it)). I really think that the Drs focus too much on what could be wrong than on the fact that things could be all right and it could just be normal for you to have those blood levels. I actually had one Dr admit to me when going for a scan that it is his job to try and find something wrong with the baby! I suspected as much and was feeling really upset, I had broken down to my husband the day before saying 'it's like they want to find something wrong with our baby' then when the Dr said that to me it almost made me feel better I was like well at least I know now it's not just me, if that is how they view their job then at least I know I'm not going crazy thinking that the entire medical profession is ganging up on me and my baby! LOL

    Here is some info I found online:
    "A number of studies have suggested that when a pregnant woman has high blood levels of human chorionic gonadotropin (HCG), she may be at risk for such complications as preeclampsia, preterm delivery, placental abnormalities, fetal intrauterine growth retardation, small size for gestational age, and stillbirth. However, new research from Kaiser Permanente in Oakland, California, contradicts the results of previous studies and states that elevated levels of HCG are of little clinical value in determining the outcome of a pregnancy."


    Anyway, wishing you all the best of luck for the rest of your pregnancies. If anyone ever wants to chat about the CVS proceedure please feel free to message me. I hope we will all be holding beautiful healthy babies in our arms very soon!

    Sharon
    Me - 30
    DH - 30

    DS born 21 July 09

  9. #9
    Excited's Avatar
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    Thanks Sharon for your reply and I wish you all the best... not long now for you.... I have stil 12 weeks to go.

    Sue
    Me & DH + Bub #1 = 3 plus 2 furbabies (staffies)

    Bub#1: Oct 2009
    Bub#2: Little Bean RIP Nov 2010

  10. #10
    cjpowell is offline New Member
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    Default Hi Sharon

    We pressed ahead with the amnio aweek ago and got our results through fish so thankfully only had to wait 24 hours, the results showed that our baby is perfectly health and normal.
    I have since spoken to quite afew people including the specialist who did the amnin and found that the test is often more inaccurate than it is accurate, and that it seems to cause more stress to parents than anything else,As this is not my first child i thought i pretty much knew what to expect, and prior to having the nuchal test had no concerns whatsoever.
    Know that we have the results of the amnio we can enjoy the pregnancy and look forward to meeting the newest addition.
    To anyone else out there in the same predicament all i can say is that the nuchal test is only a probability test not a diagnostic test so the results can definately be inaccurate,

    Much Love
    cjpowell

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