This is really just a vent and warning to others that although the NIPT blood test is sold as 99% accurate I gave birth to a little boy with Down syndrome (who’s absolutely perfect and otherwise healthy), after having high risk combined screening and then a low risk NIPT which I was offered on NHS. I was told it’s so accurate it’s virtually diagnostic so not to worry, and have since spoken to other mums of children with Down syndrome who had the same thing happen. When I questioned the dr they said I must just be the 1 in 10,000 however as I’ve met others I do genuinely question the validity of that and the accuracy rate to be honest…I would definitely recommend to any mums, especially older ones as I’m 39, to have a CVS or Amnio if you really do want to know for sure. Like I said, my son is so beautiful and we’ve come to terms with things but I am angry at the advice I was given so want to make sure others are aware!
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101HK · 16/04/2023 21:45
This is really just a vent and warning to others that although the NIPT blood test is sold as 99% accurate I gave birth to a little boy with Down syndrome (who’s absolutely perfect and otherwise healthy), after having high risk combined screening and then a low risk NIPT which I was offered on NHS. I was told it’s so accurate it’s virtually diagnostic so not to worry, and have since spoken to other mums of children with Down syndrome who had the same thing happen. When I questioned the dr they said I must just be the 1 in 10,000 however as I’ve met others I do genuinely question the validity of that and the accuracy rate to be honest…I would definitely recommend to any mums, especially older ones as I’m 39, to have a CVS or Amnio if you really do want to know for sure. Like I said, my son is so beautiful and we’ve come to terms with things but I am angry at the advice I was given so want to make sure others are aware!
Our concerns about non-invasive prenatal testing (NIPT) in the private healthcare sector - The Nuffield Council on Bioethics
https://www.nuffieldbioethics.org/blog/nipt-private
101HK · 16/04/2023 21:45
This is really just a vent and warning to others that although the NIPT blood test is sold as 99% accurate I gave birth to a little boy with Down syndrome (who’s absolutely perfect and otherwise healthy), after having high risk combined screening and then a low risk NIPT which I was offered on NHS. I was told it’s so accurate it’s virtually diagnostic so not to worry, and have since spoken to other mums of children with Down syndrome who had the same thing happen. When I questioned the dr they said I must just be the 1 in 10,000 however as I’ve met others I do genuinely question the validity of that and the accuracy rate to be honest…I would definitely recommend to any mums, especially older ones as I’m 39, to have a CVS or Amnio if you really do want to know for sure. Like I said, my son is so beautiful and we’ve come to terms with things but I am angry at the advice I was given so want to make sure others are aware!
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RubyMae1804 · 18/07/2023 14:41
Thank you so much for posting this in here and sharing your experience for others to read! There is definitely an inaccuracy in the NIPT and it Is something no one in the NHS seems to mention!! Whilst saying to you it’s 99.9% accurate, when it is not. Please do your research as much as you can and get Second opinions.
I will try and make my story as short as possible I’m 39, and pregnant this is my first pregnancy, currently at 14 weeks.
I had my 12 weeks scan all fine measurements on the neck were fine also.
NHS screening results come back high risk for DS. The midwife started saying “so have you thought about termination at this point” which I thought was totally uncalled for at this point and didn’t need to be said!
I had my bloods taken for NIPT 3 and days later the same midwife called me (yesterday) and said I’m really sorry your NIPT results have came back high for DS.
I am now booked in for an Amnio diagnostic test in 2 weeks as you need to be 16 plus weeks to get this.
I am devastated, upset, lost and numb Just can’t put it all into words how my world has been turned upside down.
But I have found some small hope in a website I have found where women in my position have had both high on screening and high On NIPT and the Amnio came back perfectly normal and fine they have went on to have babies with no abnormalities which they was told initially.
Please anyone who is told high or even low risk from the NIPT consider getting the Amnio as this is 100% accurate where the other two tests are screening tests and not 100% accurate!
I have shared the below link for anyone wanting to read it if you are in the same boat don’t give up hope until you know for sure.
https://www.nuffieldbioethics.org/blog/nipt-private
101HK · 16/04/2023 21:45
This is really just a vent and warning to others that although the NIPT blood test is sold as 99% accurate I gave birth to a little boy with Down syndrome (who’s absolutely perfect and otherwise healthy), after having high risk combined screening and then a low risk NIPT which I was offered on NHS. I was told it’s so accurate it’s virtually diagnostic so not to worry, and have since spoken to other mums of children with Down syndrome who had the same thing happen. When I questioned the dr they said I must just be the 1 in 10,000 however as I’ve met others I do genuinely question the validity of that and the accuracy rate to be honest…I would definitely recommend to any mums, especially older ones as I’m 39, to have a CVS or Amnio if you really do want to know for sure. Like I said, my son is so beautiful and we’ve come to terms with things but I am angry at the advice I was given so want to make sure others are aware!
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