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Thread: Down Syndrome

  1. #19

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    Can I just say that I think this is a very sensitive topic. And we all need to remember to respect each others views and choices on this topic.



    Just putting my mod cap on for a minute

    *hugs*
    Cailin

  2. #20

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    Deb it will only show you if the baby has DS and not what kind of DS it will have as you have so many different cases.

    Veronica i would go to your GP and get the refferal for the NF as you see the m/w after and they won't do the refferal for you and the same will go for your 18-20wks scan.

    If i was to fall pg again after this one i would have the NF done again and have no problems with having another amnio.

  3. #21

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    Well I saw my doctor today on a seperate issue but spoke to him about when I should go in and he said 13wks. So at about 11wks I am going to go in and get a referral for the u/s as well as the blood test to be done the day before.

    Dont know if this has been covered in this thread, but what does the amino involve?

  4. #22

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    Veronica if your results from the NF and blood test come back lower than 1:300 you will be asked if you want a CVS or amnio done it also depends on when you get the NF results back.
    The amnio involes them sticking a needle in to you tummy while doing a u/s to make sure they don't touch the baby and they get a small sample of amniotic (sp?) fluid and test it. The results take 2wks to come back and you will know if your baby has DS or not also you can get to find out the gender at the same time.
    If you have any more questions feel free to email or PM.
    I had the amnio done at 16wks.

  5. #23

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    if your results from the NF and blood test come back lower than 1:300 you will be asked if you want a CVS or amnio done
    I think it is different in different places. Where I went the NFT had to be below 1 in 200 before they asked you about amnio or CVS because that is the point at which the liklihood of a miscarriage resulting from the CVS or Amnio equals the chance you have something wrong. In other words if you were assessed as having a 1 in 300 risk of down syndrome from the NFT - then the risk of miscarriage from the CVS or amnio is higher so they don't recommend you have it.

  6. #24

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    Caro they normally only offer the FISH results which is the quick result if your risk is below 1:200 that is why a lot of girls have had the rests back quicker and also if the find any problems with the baby when they do the scan.
    You can still have the quick result if having a amnio done it just depends on what your risk is and what they see at the scan. You can also pay for the quick result but it's not a final result until you get the full result back two weeks later.

    When doing the FISH test they test a cell at a time and if it splits in to 3 they will keep on testing as it means there is a problem. If it splits in to 2 then most cases everything is ok. I was always told best wait for the final result 2wks later as they have tested every cell.

  7. #25
    pholmes Guest

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    Hi,
    the whole thing is a very grey area and definitely a very personal one. I decided not to do any of the testing with all of my pregnancies as I had made up my mind it wouldnt change my decision to have the baby. DH was a little more worried and suggested maybe we should do it so if there is a risk at least we'd be aware of it. In the end we decided against it as we thought it would only make us worry more. My Ob was fine with it.

  8. #26

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    Caro you would have been given the quick results because you had a 1:85 chance of having a baby with DS.

    I think if you went to a private OB you would have to pay the extra to get the results back.

    One thing i will say it doesn't matter how old you are you can still be at risk from having a DS baby.
    A friend of mine was only 25 when she gave birth to twin girls both born with DS and DS did not run in the family. She never even thought about testing because of her age at the time.

    It's a very personal choice to have the 12wks scan and even to have any follow up tests if you do have it done and the results are high risk.
    For me to have the amnio done it was for peace of mind, to know what we would be facing at the end of the day.

    I think it's something that until you are faced with it you can not make up your mind. I always said i wouldn't have further testing until that day they told me we had a 1:294 chance this baby could have DS. It's a tough thing to have to go through and not a easy thing to do.

  9. #27

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    This is always a really difficult one and one that we struggle with as mothers.
    Many women decide to have the NT done and haven't given a lot of thought to what they will do if a result should come back that isn't so great.

    There is a time when the nuchal fold begins to diminish as the baby grows. This makes the measurement less accurate. Many obs don't like to do the test until you are well into your 12th week. This is to ensure that you are not too early or too late - not everyone has had an early u/sound so dates can be a bit iffy.

    The *cut off* for when testing is advised does vary from place to place. Generally it's a 1:300 result. This is because the obs that are really good at doing amnio have about a 1:300 risk rate with their procedure. CVS is higher risk because it is essentially a biopsy with greater risk of bleeding and infection. The risk rate again depends upon the operator and I would STRONGLY urge anyone that requires either of these procedures to ask the risk rate of the particular doctor that is doing your procedure.If there is someone that word of mouth tells you is good go with her/him.

    The FSH test is offered on both CVS and Amnio but you cannot be 100 percent certain that your result is a okay until the cells are cultured which takes 10-14 days. The FSH gives a very good indicator though. I have had FSH with my DD3 and DD4. I didn't have to pay any extra for it - the specialist I see uses it routinely for all amnio and cvs procedures so again this is something you would need to check when you book in. Also the time frame for amnio varies with the operator too. There needs to be an adequate amount of amniotic fluid in order for the test to be carried out. The further along in gestation the more likely that this will be the case.

    Some women choose to have invasive testing when the result of NT u/s isn't so great even if they would choose to continue with a pregnancy. For some families this gives them time to understand what condition their child has and the variables attached to that. It also gives them time to let go of the picture they had and fall in love with the baby that is coming.

    So, it isn't always just for people who would choose to interupt the pregnancy.
    Again this is such a sensitive subject and one of those procedures that we need to go into with our eyes open and a little bit of background knowledge to truly understand.

    The false *positive* (positive being less than 1:300 - it's a screening test so is not a true negative or positive) rate can be high - again you need to ask the specialist doing your u/sound what his rate is...

    I believe it is really important to be a fully informed health consumer when going in for this test. Remembering that most women come out of the u/s smiling with happy odds.

  10. #28

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    From my literature I seem to remember that it's best, but not necessary, to have the BT in the 10th or 11th week? LOL it's not that long ago for me, but I don't remember anything these days! Can anyone clarify that, and tell me why that is?

    My Ob wasn't fussed about it, but I chose to go in twice so I could have the BT at the "best" time. We have a family history of DS (not strong), so I wasn't taking any chances. I was quite concerned actually, but our results were great......1:22,200!

  11. #29

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    Sez,
    I have not heard that before and it's not my experience so I am not sure.
    The obs I worked with likes the b/t to be done the day before the u/s. The literature I have read with regard to this supports that the blood test should be done as close as possible to the u/s.

  12. #30
    clare076 Guest

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    I just want to remind everyone either considering or not considering the NF scan, It is also useful in detecting other chromosomal abnormalities as well, not just Downs. These abnormalities are lethal to your child and start causing problems from the beginning of your pregnancy.

    We had the NF scan with Max, never in my wildest dreams did I expect our results to come back bad. We hadn't even discussed what we would do if bubs had DS, we just wanted to see bubs on the screen.

    This one scan turned our life into turmoil, Max was measuring 2 weeks behind however the NF measurement was only 1.2mm so we still thought all was OK. We got the results that very afternoon, 1 in 98 for trisomy 13+18.

    We chose to have the amnio after a failed CVS (long story) and within 24 hours we got the results, Max had triploidy. He was delivered sleeping 10 hours later, after we intervened.

    Many people told me what I had done was wrong because I never gave him a chance, but not one person could tell me that he wasn't already in pain, he had numerous physical abnormalities and was slowly dying. (triploidy is lethal)

    That scan changed our whole life, and I would do it again in an instant. I believe having knowledge is a powerful thing, I knew my baby would suffer if I carried him to term and I couldn't do that to my beautiful son.

    Sorry for the long post, but I urge you all to please remember the lethal disorders that can be detected as well.

  13. #31
    clare076 Guest

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    Thanks Caro
    I think the problem is, that these chromosomal abnormalities are not talked about as much as DS, and people just don't realise that there is absolutely no hope of the child living. I was told that there is only one child in the whole world that has survived past 4 weeks old with triploidy, as they will not intervene (other than oxygen) on delivery.
    We know we did the right thing for Max, and my friends (I know who they are now) have supported our decision, that's all that matters.

  14. #32
    Debbie Lee Guest

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    I just wanted everyone to know that I deleted my earlier post.
    I don't want to come across as insensitive to others. I was merely saying why I chose not to have the tests done... not to attack others. However, I do see that this is a sensitive topic so I thought it best to remove my post - the last thing I want to do is upset anyone. Just thought I'd explain so that no one thinks I'm upset or chucking a tanty or anything! LOL

  15. #33
    Debbie Lee Guest

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    Thanks Caro.
    I've learned the hard way with these forums tho. People can't hear the tone of voice so often things are taken the wrong way. Just not worth leaving the post there JIC.... iykwim?
    TBH I didn't realise just how sensitive the topic was until I read a few of the responses.... you live and learn, hey?

  16. #34

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    Deb i promise you that you didn't come across insensitive at all. It is a very sensitive subject and it's one that is now close to my heart. But each of us do what we think is best for us and it doesn't matter if no one agrees with you it's your choice at the end of the day.

    I'm sorry of my post earlier upset anyone so much of this subject is kept in the dark. It's something i never dreamed would happen to us.

    Clare i can't believe what ppl have said to you. What you did was the right thing to do and you know i would have been with you the day you had Max. Watching Craig come out of the scan room that day just broke my heart for you both. It was the very first day i met you both and it's brought a great friendship one that i have Max to thank for one day.

  17. #35

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    Clare :hugs: Sometimes when life doesn't give the pain of something like this to another they have no idea. I am sorry you were treated with insensitivity and the hurt that that has caused. It is a very brave person to make such a judgement on another's decision.
    Triploidy is not compatible with life and your journey has been long and painful I wish I could hug you right now in person but I can't ...

    I have a concern about women feeling that their test wasn't *right* because the u/s or bloods weren't done at the same time as the next persons. If you follow the guidelines of the practice and doctor that is doing the procedure then that is what is right for you.
    I don't want someone to read this thread and think - well my test was done at... so it's not as accurate.

    I can't answer why your bloods were done so far spaced Caro - that's not the practice of the fetal medicine units in Brisbane nor the u/s clinics that do nt u/s here. However, it would seem Sez had her bloods taken some time prior to the u/s also. Because I have worked in the field I would be really interested to know though... I will ask next time I see the specialist here and I am sure he will have an answer and I will post it for others information.

    As Clare pointed out NT doesn't always tell us what we want to hear - I know before all of mine I have prayed as hard as I could for a good result (I have had 6 nt scans now).

    Big big hugs again Clare

  18. #36

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    Caro you are so right about being told different things by different ppl. I was told at 27wks i should thnk about not having anymore after this one and then this week i see a different OB at the hospital and he says he doesn't see a problem as lomg as all goes well up until the end of the pregnancy.

    I was told a few weeks ago when having a u/s that so many women go in for the NF scan and think all is okay because the NF isn't that big only to find out later they are in the high risk area. I was one of them that also thought that when having my scan. We seem to forget it has a lot to do with the blood test as well and not just what they pick up on the scan.

    When i had Alex i had the BT done the same time as the scan with this pregnancy i had it done the week before.

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