Before you read on I must warn you that some of you, my readers, may not like the contents of this post. It may come across as too controversial to some, and while I appreciate that it may upset some people, it is not intentional. But I have a viewpoint about the NIPT Blood Test that I want to share. So here goes.
This post stems from news in January (15th) that the NHS is backing a safer blood test for Down’s Syndrome which could soon be offered to all pregnant women deemed to be at risk of having a child with Down’s Syndrome, Edward’s or Patau Syndrome.
Currently pregnant women who fall into certain high risk categories are offered additional tests by the NHS between 10-14 or 14-20 weeks. The tests at 10-14 weeks are a combined blood test with a nuchal translucency scan (which I was NOT offered by the NHS in Wales). The results of these two tests, combined with your age are used to determine the risk of your baby having Down’s, Edward’s or Patau Syndrome.
Different blood screening is offered between 14-20 weeks called the quad tests (I was offered these). This test only screens for Down’s Syndrome and is not as accurate as the combined test. What should be noted is that these tests cannot tell for certain whether your baby has one of the chromosomal syndromes, they only indicate whether you have a higher or lower risk of having a baby with one of the mentioned conditions. Currently the only way to tell for certain is to undergo invasive, diagnostic tests such as an amniocentesis or chroionic villus sampling (CVS), both of which carry a 1:100 chance of a miscarriage.
The new test mentioned in the news in January is a non-invasive prenatal screening test which is a simple blood test, which can be taken from 10 weeks gestation, called the NIPT Blood Test. The principle behind it is that there is a certain amount of fetal cell-free DNA present in the mother’s blood which can be separated and can undergo chromosomal testing, for Down’s, Edward’s and Patau Syndromes. If this test result shows a low risk result it means the chance of your baby having one of the conditions is less than 1:10,000.
A high risk result means the probability your baby has one of the conditions is greater than 99%. The NIPT Blood Test is much more accurate than the screening tests offered by the NHS at the moment and as it is non-invasive, unlike a CVS or amino test, it carry no risk of miscarriage. Also, as it can be done as early as 10 weeks gestation it allows parents more time to absorb news of a higher risk result and to receive the help and support they may need in deciding whether to continue with the pregnancy or not.
So why am I writing about all of this? Because I had the NIPT Blood Test at a private clinic. As I was over 35 years of age when I fell pregnant, and knew of the increased risks due to my age, I wanted all the tests I could have to check everything was ok with my baby. As mentioned, I wasn’t offered the nuchal translucency scan, only the quads which were pencilled in for 16 weeks gestation. So I had to wait 8 weeks from first seeing my midwife to find out the results of the quads tests. That felt like a very long time to me.
My husband and I had long discussed what we would do if we were told we had a higher risk result and our only option then would have been an amniocentesis, with all the risks it carried. So when I heard a radio advert for the Harmony Blood Test (now known as the NIPT Blood Test) at Innermost Secrets in Cardiff, we very quickly called the clinic to find out more. This was two and a half years ago and it was only one of two places in the whole of the UK offering this test. It also carried a price tag of £750 at the time but we decided to do it to know as early as possible if our baby had any possible chromosomal abnormality. Money wasn’t an issue when it came to knowing how our baby was doing and we were fortunate to be able to afford the test privately.
At 10+5 weeks I had the blood test and one week later the clinic rang to say our baby’s risk of having one of the conditions was less than 1:10,000. In other words it was almost impossible the baby would have one of the conditions tested for. It was such a huge relief and as a bonus we found out the sex of our baby before we were even 11 weeks pregnant. So, 6 weeks before the additional NHS testing was due to start we got the all-clear and began to relax and enjoy our pregnancy as we got our heads around the fact we were having a little boy!
Now, I can understand why people, especially parents of Down’s Syndrome children, may hate the idea of this test. Some may even go as far as to say it’s playing God but in my mind every expecting parent has a right to know what they may be facing in the future and as early in their pregnancy as possible. And no one should be put at higher risk of undergoing a miscarriage if it can be avoided at all.
Don’t get me wrong this test isn’t without its faults. On occasion there may not be sufficient fetal cell-free DNA present to do the tests. And if a high risk result comes back then an amniocentesis or CVS will still be offered to obtain a definitive diagnosis. The NIPT blood Test, as mentioned, is more accurate than the current NHS blood tests with low risk numbers going from less than 1:150 (NHS) to 1:10,000 (NIPT). These statistical figures are what drove me to have it as there is a huge difference between them.
And I’ll be very honest here, had we had a high risk result and confirmation of a chromosomal abnormality we would have chosen not to continue with the pregnancy. We had discussed this at length and it would have been hard but deep down we knew that decision would be the right one for us, had we had to have made it. I won’t go into the details of why here. Suffice to say they are personal, between my husband and I.
But getting this more accurate test done at an earlier stage than the NHS tests meant we had the time to digest any news, and anyone else who may have it will have the time and opportunity to discuss options at length before the pregnancy gets to a later stage. If counselling and support are required, couples can get it early. And if they choose to end the pregnancy, this too can happen earlier than if they needed to wait for quad tests and a further amnio or CVS on the current NHS schedule.
In my opinion this new NIPT screening test is a good thing and the sooner it’s available to all women on the NHS the better. No one should be forced to get it done privately. It may result in a slight rise in abortions but conversely it may also reduce the number of invasive tests being done, which in turn will reduce the number of unnecessary miscarriages.
I firmly believe it is every couples right to decide how they wish to proceed with their pregnancies and if the NIPT Blood Test allows them to make better informed decisions then why see it as a negative thing. To me it’s a good thing and a step in the right direction. Current tests are not accurate enough and we need to move forward when technology allows us to.
Sorry for the long post but I needed to write about something I feel strongly about and unfortunately you’re my audience. Thank you if you got this far!