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  1. #1
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    Default High Risk Down Syndrome - Your stories PLEASE!!

    Hi . I am completely obsessing over this. I have spent all day googling this and finally decided to post on here to get peoples thoughts, advice and stories similar to mine?!! I am 30, weigh 54.5 kgs and am 13 weeks pregnant. I had my 10 week blood tests done and last week went for my 12 week scan. I have been told I have a high risk of down syndrome. The nuchal fold was measured at 2.5 (which the radiologist supervisor told me was within normal range at the time of the scan) Free Beta hCG is 0.661 MoM and PAPP-A is 0.321 MoM. My doctor didnt explain any of these numbers to me, just told me I had a 1 in 188 chance of having a baby with Down Syndrome (my two previous births had a 1 in 15000 chance so big difference)and sent a referral off for me to have an amnio done in 3 weeks time. The last 24 hrs since I found out has been torture, I can only imagine what the next 3 weeks plus time til I get results is going to be like! So Im wondering a few questions... I thank you in advance x 1. Is the 2.5 nuchal measurement within normal range or was the radiologist fibbing??!! and if it is does this mean it is my blood test results that have placed me at high risk? 2. What is the healthy range for the Free Beta hCG and PAPP-A at the 10 week blood test? ie. how far "out" are my results? Just a little or a lot?? 3. Has anyone or does anyone know of anyone who has had a miscarriage from an amnio? 4. Has anyone had an amnio done at King Edward in Perth? 5. Has anyone or does anyone know of anyone who has been high risk, had an amnio and told everything is fine, but still given birth to a baby with down syndrome? Ive heard that amnios are 99.8% accurate, Ive read they are 100% accurate, yet been told the amnio gave a false reading for a friend of a friend as they didnt "test the whole sample" Is it common practice to not test the whole sample? 6. Are you allowed to have a second amnio to get a second opinion? 7. If (and Im only saying if) we decide to terminate the pregnancy due to a positive down syndrome result , I am guessing I will be somewhere between 17 and 19 weeks. What is the procedure for termination at this stage? I know of someone who terminated a pregnancy due to spina bifida and was induced into labour and gave birth to the baby (which passed away hour after) I am not sure how many weeks she was and am wondering if this would be the case in my situation? 8. I had about 6 or 7 weeks of brown discharge (like I would get at the beginning of a period) with the occasional pink blood which the doc had no explanation for other than a possible miscarriage going to happen. Could this have any effect on the blood test results? 9. Are there any other reasons for the blood test results to be out other than down syndrome? I read somewhere that someone in a similar situation was told that they may have had brown and pink discharge due to the early loss of a twin which could have obscured her results???In my 6 week dating scan the radiologist thought for a split second she saw a second sac and there is twin history in the family although there is now definitely only one baby. PLEASE HELP ME BEFORE I GO CRAZY!!!

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    I will give you a short answer now aa its very late but my results were almost identical to yours. Scan was fine, bloods hcg 1.1 Papp-a .33 risk 1.200 for t21. Had the amnio and my baby is sleeping next to me. Perfect in every way.

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    A friend of mine recently had the amino at King Edward Perth, with a 1 in 75 chance of downs, she got the all clear. So your odds are still good! Xx


    ~Isla Rohmaine arriving sept 2013 and a baby makes 3!

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    Calm down, 1 in 188 is not much. Thats about your chance of dying in the next ten years.
    There are plenty of other bad things more likely, though I probably should not list them.
    All they are saying is that the risk is enough to justify getting an amnio, then you will know for sure.

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    I had a high risk result (on bloods not measurement) for this pregnancy, and an amnio, so I may be able to answer some of your questions.

    Is the 2.5 nuchal measurement within normal range or was the radiologist fibbing??!!

    Yes, that's considered within normal range, and has been about what I've had for both pregnancies (both with normal results).

    and if it is does this mean it is my blood test results that have placed me at high risk?

    Yes. And this is actually a 'good' thing, in that it's better to have good measurements and not so good blood results than the other way around.

    2. What is the healthy range for the Free Beta hCG and PAPP-A at the 10 week blood test? ie. how far "out" are my results? Just a little or a lot??

    I don't know the range, however '1' is normal. They look at how far from 1 the figure is, as well as the ratio between the two numbers. For example, with DD (for whom I received normal low risk results at that scan), my hCG was over 2, and my Papp-A was close to 1. For this pregnancy (high risk result) my hCG was over 2 again, but this time Papp-A was low (less than 0.5) so the ratio between the 2 numbers was higher, and it gave me a high risk result.

    3. Has anyone or does anyone know of anyone who has had a miscarriage from an amnio?

    No. I know a lot of people who have had amnio, but no one who has miscarried from it. Check out your clinic stats. My clinic told me that they had 3 miscarriages in the last 2 years (out of 2000 amnios) which they included in their clinic stats. Of those 1 of them happened after a 20 week scan (nearly 3mths after the amnio), so they don't believe it was connected, but included it in their stats anyway. Those stats also include babies where there is something wrong and the baby would not have gone to term. My OB (who has been practising for 30 odd years) said he has only ever seen 1 miscarriage which he felt was attributable to an amnio, and that was a long time ago (when the procedures were not so accurate). They use a finer gauge needle now, along with ultrasound.

    4. Has anyone had an amnio done at King Edward in Perth?

    Not me, sorry.

    5. Has anyone or does anyone know of anyone who has been high risk, had an amnio and told everything is fine, but still given birth to a baby with down syndrome? Ive heard that amnios are 99.8% accurate, Ive read they are 100% accurate, yet been told the amnio gave a false reading for a friend of a friend as they didnt "test the whole sample" Is it common practice to not test the whole sample?

    No, I was told that the accuracy of the results were to be trusted. My amnio clinic said they have never had a false result. If your info came from a friend of a friend I would be inclined to think there is some misinformation/ gap to the story there.

    6. Are you allowed to have a second amnio to get a second opinion?

    I'm sure you could if you paid for it, but your clinic would advise that this was not necessary due to the accuracy of the results.

    7. If (and Im only saying if) we decide to terminate the pregnancy due to a positive down syndrome result , I am guessing I will be somewhere between 17 and 19 weeks. What is the procedure for termination at this stage? I know of someone who terminated a pregnancy due to spina bifida and was induced into labour and gave birth to the baby (which passed away hour after) I am not sure how many weeks she was and am wondering if this would be the case in my situation?

    The usual procedure would be that labour would be induced as soon as possible, and you would give birth to the baby, which would not then survive. I'm sorry to put it so bluntly. Most hospitals will give you the choice of whether or not you want to hold or see the baby, or have a photograph. If you don't want to then you don't have to.

    8. I had about 6 or 7 weeks of brown discharge (like I would get at the beginning of a period) with the occasional pink blood which the doc had no explanation for other than a possible miscarriage going to happen. Could this have any effect on the blood test results?


    There are some studies that suggest early bleeding may be linked with low Papp-A results, along with other things like IVF. (I had a pregnancy through IVF, along with early bleeding, so I researched these.)

    9. Are there any other reasons for the blood test results to be out other than down syndrome? I read somewhere that someone in a similar situation was told that they may have had brown and pink discharge due to the early loss of a twin which could have obscured her results???In my 6 week dating scan the radiologist thought for a split second she saw a second sac and there is twin history in the family although there is now definitely only one baby. PLEASE HELP ME BEFORE I GO CRAZY!!!

    There are studies linking IVF and early bleeding with low Papp-A (as mentioned above), but not enough large scale studies to know for sure.

    Your odds are good, so I would take heart from that. Mine were 1:61, and luckily came back clear. I know how stressful this time is, but hold on. You have every chance that everything will be absolutely fine.

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    Bubbles10  (28-04-2013),ertgirl  (15-08-2013)

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    Your risk may have actually gone up as you are also now 30 and obviously weren't with your previous pregnancies.

    A 1:188 chance still means you have a 1:187 chance things will be fine which is a lot better odd then 1:2 of T21 or 1:4 of T13 & 18 when I was 24.

    I was told anything 2cm and under was classed as low risk. So you would be borderline low to medium due to your measurements. 5.9cms was classed as extremely high. Bub could of been laying slightly different so it's pushed the fluid more to one spot too.

    So instead of worrying too much (easier said then done I know) try looking at the odds the other way around that its a 1:187 that bub will be ok.
    Last edited by ClearCrystal; 28-04-2013 at 07:49.

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    I agree with Girl X and think she's given you an excellent detailed response.
    I hope it helps ease your nerves.

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    jazi82, I don't have any answers to your questions, but I did just want to say that IF your results do come back positive for Down syndrome, please feel free to pm me with any questions you might have. I have an almost-four-year-old with Ds.

    Best of luck - it sounds like a terribly stressful time for you right now, and I wish you well.

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    I think you need to calm down too. a friend of ours was told she definately had a down syndrome baby and was advised to terminate. she refused and guess what, thank god she did because the baby was born normal.

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    Quote Originally Posted by Minchi View Post
    I think you need to calm down too. a friend of ours was told she definately had a down syndrome baby and was advised to terminate. she refused and guess what, thank god she did because the baby was born normal.
    is this a friend, or 'a friend of a friend'....?, did she have an amnio and genetic counselling? because I have heard this stated a number of times, and i think it more of an urban legend that gets repeated. I have worked in a genetics clinic and 1) the chance of an error in amnio results is miniscule and 2) women are not 'advised' to terminate. Termination of pregnancy is one of the options offered to women, and counselling is offered, particularly if the amnio results is positive, but the decision is always the woman and her partner's.
    Last edited by Bubbles10; 28-04-2013 at 11:26.


 

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