question for dellabella

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jenneve
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Posted: Sun Oct 02, 2011 7:27 pm 
Post subject: question for dellabella
im sure i have seen in one of your posts that your eldest daughter has downs syndrome am i right? Question
if i have the right lady i just have a question for you. when it came to testing did you agree or decline the nt scan? and did you know you were having a downs baby or did you find out at birth? would you have been any more prepared if you did know?
my reason for asking is because i have just declined my nt test even though i have downs in the family and we are in the 3% of people that it could be genetic.
last time i was pregnant you didnt have to sign for your scans. this time i had to give my permission but my view is i wouldnt want to know either way.
i apologise in advance if this is a personal question.
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dellabobella
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Posted: Mon Oct 03, 2011 9:49 am 
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No it's fine. I don't mind at all.. the more information people have on the subject the better. With Shannah I had no idea. I had all the usual scans - well more really as I was living in the US for the first 4 months and my doctor did a lot of early scans - but declined any further testing as I really didn't think there was much of a chance or anything being wrong with only being in my early 20s. So I didn't find out until birth. From my point of view I am very glad I didn't find out about her until she was born as I knew nothing about DS except for a few people I'd saw around town and honestly I can't say whether I would have continued with the pregnancy at that time because of that. I can't say whether I'd have been more prepared as I was sort of chucked in the deep end and just had to deal with it but to be honest knowing a few facts wouldn't have mattered.. I would think you've got to be confronted with it to comes to terms with it and that doesn't happen until the baby is there. Saying that I had an nt scan and blood tests with Kieran which were useless as even though they came back fine it never really made a difference to me worrying and I had a CVS with Adam as I was so worried with Kieran I just couldn't enjoy my pregnancy. So I suppose knowing can help but if you're going to continue with the pregnancy then it doesn't do anything to change the fact.

What's this about it being genetic? As far as I know 90% of cases of DS just happen randomly. I've heard of translocation where one of the parents can be a carrier or something like that although not have it themselves but I don't know too much about it other than a doctor going over it briefly when I was worried with my second pregnancy. Shannah just has the typical DS. The only thing I would say is if you wanted to be sure you and your OH could go and have genetic testing but I don't know how much that would cost. When I had my nt test with Kieran they weren't going to give me the bloods so I was going to private hospital and I think it was going to cost 100 but they ended up doing it for me in the end.

If you have any other questions or anything like that just ask I don't mind. I'd prefer people get information from somebody who has been there instead of some website that doesn't have any personal experience whatsoever.
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dellabobella
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Posted: Mon Oct 03, 2011 10:08 am 
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Do you have another child who is err.. for want of a better word "normal" Jenneve? I just had a look at the translocation type out of curiosity and it seems the if you have a child who doesn't have DS then it's less than extremely unlikely that you would have a child with DS unless it was just a random thing like Shannah which can happen to anybody.
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jenneve
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Posted: Tue Oct 04, 2011 8:14 am 
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thankyou for your reply.
myself and my husband both have downs syndrome in our family. his uncle who sadly passed last year but at 65 years old which is a good age, and my mothers cousin who also is no longer with us but they dont class him as imeadeate family. we have been told as you say that in most cases its random and can happen to anyone but your more at risk the older you get but there is a 3% chance that the chromasone 31 can be carried geneticaly without some one being affected. im no expert though and take for granted what im told.
it would make no differnece to me but i just wanted to ask someone who has had a downs baby if it wouldve made a difference. i feel like ive made the right decision not to know as i dont think an extra few months of knowing would make me anymore prepared!
i am naturally a curious person but i couldnt ask any of my family as they didnt do any testing back then!
i have my scan on thursday next week and to be honest im waiting to see if there are 1 or 2 in there! non identical twins are also in our family! my bump seems to be big already!
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dellabobella
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Posted: Tue Oct 04, 2011 12:23 pm 
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I'm sure everything will be fine and I agree that a few months knowing wouldn't really help much. It's like being pregnant in general.. you know you're going to have a baby in whatever amount of months time but the reality of it all doesn't hit you until they are there screaming their heads off lol. Nobody ever picked up anything being different about Shannah on my scans and the people I've spoke to all say they find it very difficult to see the differences unless it's an nt scan. I just think these non invasive tests only make you worry and I don't see the point as they're never going to give you a yes or a no which is why I had a CVS with Adam x
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jenneve
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Posted: Tue Oct 04, 2011 3:47 pm 
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thanks for answering my questions.
i told my husband and he is also behind my choice to decline. only 6 long months to go!
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