Can a Nuchal Test show severity of Downs etc?

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GGmommy
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Posted: Thu Mar 13, 2008 6:33 pm 
Post subject: Can a Nuchal Test show severity of Downs etc?
Hi All,
Read several forums but no-one seems to mention this, but i am at the stage of considering a nuchal test done privately (NHS in my area wont do them!). The price is not the objection, but the result. If it comes back with a strong chance of disability for the baby is there any way of knowing how badly affected the baby will be before we reach a decision on what to do??? I know that Spina bifida can range in severity particularly and it is one thing if the child is severely handicapped and another if it is just mildly affected!

Thanks for any advice, my husband really wants the test but i am so not sure?????

Sad [/i]
flossie
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Posted: Thu Mar 13, 2008 6:41 pm 
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Hi Gmommy - I just booked my Nuchal scan today I am having it done on the 26th March, I too am having to pay private as my local hospital does not offer this service. I have been told it will in conjunction with blood tests give me 'odds' of my baby having downs and spina bifida, if my odds are high then we will decide if we should opt for the amnio, this is something I am extremely anxious about. So the way I have taken this is that the NT scan will not give you a definitive yes or no but is a very accurate non invasive test that will guide you. It is very confusing though isnt it..Flossie xx
GGmommy
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Posted: Thu Mar 13, 2008 6:45 pm 
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i know, it is so hard! I would love there to be some way of knowing how badly affected the baby may be and not just the chances. I am only 30 and have no history of it in either family but still it worries me so much. I dont think that i could cope with a severely handicapped child but at the same time i am so excited about being pregnant that i just cant think of the option to get rid of the little one. My husband is dead in favour of it but i just cant face the consequences, especially not knowing if it is just mildly affected!!!! It is a minefield. Thought getting pregnant would be the hard bit, didn't realise that there could be this many things to worry about!!!
GGmommy
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Posted: Thu Mar 13, 2008 6:46 pm 
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Forgot to say good luck Flossie with your scan, let me know how you get on, i think mine will be a little after that as i am 8/9 weeks now!
flossie
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Posted: Thu Mar 13, 2008 6:56 pm 
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Thank you - I am 40 and my partner has a 1st cousin with Down Syndrome, we were told by Consultant that is a chromosonal abnormality and there is no link...I hope that is accurate I would not want to offend anybody. I have already had 3 scans because of previous m/c so they are keeping an eye on me, I have been told today that my scan will take approximately an hour and there is also a consultant on hand to talk through the results. My partner and I have already made our decision if after all tests possible are done we get a positive for some abnormalities, after a positive result from amnio I am sure further tests are carried out to inform you of severity of abnormality. I will certainly keep you posted I am very excited about seeing my little one again - I had my last scan on Tuesday and he or she was waving about and bouncing on its head!! I really understand what you are going through. Flossie xx
sozzle
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Posted: Fri Mar 14, 2008 10:26 am 
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Hi Ladies - i had my NT scan last Sunday (combined with blood test) it is indeed a really difficult decision as to whether to go for the scan or not. My decision was made a little easier by the fact that i would not have had a scan until 20 weeks where i live so it was as important for me to see baby as the actual test. The sonographer or consultant takes you through the scan and what they are checking for which is essentially the amount of fluid in the folds at the back of the neck. the lower the amount of fluid, the lower the risk of downs. They usually give you this result straight away. i also had a blood test which tests two hormone levels and apparently gives you an even more accurate risk assessement of baby having downs (result is combined with scan) as you say the overall result is a risk assessement, expressed as say 1:1000. The lower the second number the higher the risk. if that is the case then they will recommend that you go on to have an amnio test which is more invasive. (again your decision) The chances are that most women are very low risk and the result just provides them with piece of mind. for those who have a high risk then it does then allow you to decide whether to go for the amnio and get a better picture of what is happening. if there is a strong risk of downs thereafter then it does at least allow you to decide whether to keep the baby (not an option for some) or to at least prepare themselves for the possibility of having a disabled baby. at the end of the day it is a completely personal choice and i do know that some ladies would prefer not to put themselves through the worry. however, i felt that if i didnt have test done i would probably then worry throughout rest of pregnancy that something might be wrong and i wouldnt know thereby increasing anxiety! all i can say, is good luck with whatever decision to take, i completely and utterly sympathise with you as it is really difficult and stressful. take care, sozzle (p,s sorry for such a long message!!)
GGmommy
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Posted: Fri Mar 14, 2008 3:04 pm 
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Thanks Sozzle, really nice to hear from someone who has had it done. I assume all was well for you Question It's so hard. I think i will go for it, simply like you say to hopefully put my mind at rest so that i am not wondering throughout the pregnancy! If it did come back with a high risk i just dont know what i would do - i already feel so attached to the little one that i couldn't terminate, but at the same time, i wonder if it fair to bring a baby into the world that will have so many problems - it is a difficult place at the best of times!!!
Thanks for the help though! Laughing
sozzle
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Posted: Fri Mar 14, 2008 4:56 pm 
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you are so welcome!! i agonised over decision - my husband definitely wanted to do it but like you i was petrified that if something was wrong i wouldnt know what to do. as i say, in the end, i decided that i would probably work myself up more by worrying about it for next 6mths rather than finding out and dealing with it. I agree also, the attachment is already there and so it would have to have been pretty dire for me to consider the unthinkable. For what its worth my friends sister has downs and her family never regret their decision to have her as she is so special in lots of diferent ways. i dont know if the amnio (if you have to have it) can tell you severity of condition (worth asking) as its maybe something that can only be determined by testing once baby arrives. from what you said though if you do feel it wouldnt be right to have the baby if tests were not good then the only way you can make this decision (before baby is born) is by having test. On the positive side, it is very unusual for the tests to be negative and so chances are your little baby will be absolutely fine and tests will confirm this. i do understand how difficult it is though because i was literally shaking before we had test and got results which im very thankful to say turned out absolutely fine (v low risk). If you can, try to remain positive - im sure this mindset can only be a good thing for baby! Let me know what you decide, i shall be thinking of you sozzlex
CL
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Posted: Fri Mar 14, 2008 8:58 pm 
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Hi girls, hope you are all o.k. When I had my 12 wk scan the result was that the chances of the baby having problems was 1 in 84 (im 32) so fairly high risk. We were then offered a CVS which is an invasive procedure and a 1 in 100 chance of a miscarriage we decided not to go for it (very personal choice). We decided to wait for a very detailed scan at 20 wks at a specialist clinic and then we had the option of the amnio then which we were told also carried a very small chance of a miscarriage. Luckily as far as they could see everything was ok but they did inform us that the only time they could tell was after the baby was born. It is a very worrying time but everyone is different and should do what they feel is best for themselves, we had family members tell us to have the amnio but decided against bt obviously this is not the right choice for everyone. Good luck everyone and take care, only you know what to do.
flossie
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Posted: Fri Mar 14, 2008 9:59 pm 
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Thanks guys it is so good to hear everyones personal experiences - we are all different and may choose different options along the way, however I am sure we all agonise over which is the right one. I will let you all know how I get on. Take care, Flossie xx
sozzle
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Posted: Mon Mar 17, 2008 9:44 am 
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Hi all, my friend and her five month old baby came to stay this weekend. she had NT test when pregnant and was told that she had a 1:32 chance of baby having downs. She opted for amnio and results showed much lower risk. im very happy to say that her little girl was born in November and is perfect in every way. i just wanted to let you know as it is a very scary and stressful time but even if results are not what you were expecting, there is every chance that the little one will be fine.
GGmommy
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Posted: Wed Mar 19, 2008 2:31 pm 
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Thanks for all the help. CL i hope everything works out for you - you sound a very positive person, that will surely be good! let us know how it all develops.
Sozzle, that is really good to hear too. You assume that if the risk is high it is always going to be bad news. I worry that if the risk is high then i will assume the worst, but it sounds like there are other steps that you can go through - looks like there are other options if the risks are high, thanks for that!
Just about to book the private scan - 180 ouch! Good old NHS doesn't cover it here in the midlands! Was just looking on the internet and the clinic does the 4d scans and things later on...how amazing!

Take care everyone, let me know how you all get on!
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