To think MN is taking a strange stance on the NIPT test?

[eeyoresgrumpierfriend]

Is it just me or is MN giving a lot of coverage to those opposing the new non invasive prenatal screening tests the NHS wants to introduce. Today's blog of the day, Sally Phillips at Blogfest and there was a guest post against screening a while ago too.

Full respect to these women and the choices they've made but isn't the crux of the argument about women's choice?

The NHS already screens for Down's, Edwards and Pateau's but the new test will be safer and can be done earlier. It's only going to be offered to women who would otherwise be advised to have amnios/CVS.

So it's a less invasive, faster, less scary, safer way of women getting the information they want to make an informed decision right for them.

Odd that MN's seem to be giving a platform to the anti-argument with no counter-balance?

Agree with hazeyjane's very thoughtful post. The thing is, every life has limits - it's just that some limits are considered more acceptable than others...

I wonder whether more people would continue with their pregnancies, if society's attitude towards disabled people were different? (I do support women's right not to continue with the pregnancies, btw.)

I was one of the first to have NIPT with my last child (privately). Because with the one before it, I was given a 1 in 34 chance, and I didn't want to risk him with CVS or amnio. I waited it out and it was the LONGEST wait of my life. He didn't have Down Syndrome as it turned out, but he does have ASD, heh!

With NIPT we had the results at 12 weeks. Which was good, because the screening came back at 1 in 5 but we already knew she did not have Down Syndrome. A friend had a 1 in 2, but thanks to NIPT she knew her child did not have it either.

We wouldn't abort for DS (fully respect the rights of those who do) but like so many I need to know so I can prepare. It annoys me when people say if you wouldn't terminate, why would you test? Because I need to know to give baby the best chance in life, and the information is actually available, unlike with most things in pregnancy!

For what it's worth, the existing screening is still worth it whether you want to know about Down Syndrome or not. I had crazy low levels of PAPP-A with one pregnancy and crazy high levels of bHCG with the other (which is why I screened positive). Both of these things can be an indicator of placental problems, but it meant I could take medication to reduce the risk and have additional growth scans.

I don't think the NIPT test will change much apart from stopping women miscarry in from the amino test. Most people that would choose to abort currently have the amino. I had the NIPT test over a year ago , paid £200 at my local nhs hospital. I had a high risk of baby having downs but would have continued with the pregnancy anyway so did not want to risk amino. But like someone said we wanted to know what we were up against as had to consider how it would affect our older child and if I would be able to continue to work. With out NIPT we would have just had to wait and worry for the whole pregnancy as it's not just the downs it's the associated heart defects we were more concerned about.

I haven't read it, but has it been mentioned that Sally Phillips has a strong Christian belief, and this might be affecting her view?

I think it is very difficult to be impartial if you have a child with Downs Syndrome. I have been in the position twice of a very high nuchal and bad bloods. The first time I opted for a cvs. The second time I paid hundreds of pounds to have the private equivalent of the NIPT when it was just available in this country. I would never have had another cvs and risked my child but I would have put anything at my disposal to have the information to make an informed decision.

I also think that very very few people with a positive test for Downs would terminate lightly or without as many facts and information as they could gather. To suggest otherwise is to belittle an individual choice. I am delighted NIPT will be available on the NHS. The thought that my daughter could have been one of the 1-2% horrifies me.

Completely and utterly agree with MrsDeVere on this.

The trouble is that when you are pregnant you deal with doctors and the majority of doctors are firmly entrenched in the medical model of disability.

This. 100%

if the nhs is going to offer a test (which it does) surely the more accurate and safer test is better.

That's about the size of it for me.

And surely the NIPT will allow families to go away and use their own resources to understand what the implications may be. Whatever information doctors may give, anyone with Internet can do more research.

Also as NIPT can be done as soon as 9-10 weeks (and results take two weeks - might be less now as this was three years ago) there is more time for people to make that decision and research what it may be really like. As opposed to feeling pressured in a doctor's room having been presented with clinical and often quite biased facts. And more often than not being offered a termination appointment on the spot ("you don't have to take it" but the fact it's even there creates bias) as "time is running out" for less unpleasant types of termination.

That said, I'm assuming as it's NHS and only done post existing screening (11-13 weeks plus a week long wait for results) that it won't give that extra time unfortunately. But for those who still opt to go privately because they want to know for sure, they can know sooner. And have time to genuinely and properly consider their decision.

Ive not rtft.

However, it annoys me that the new nipt is seen as being akin to 'Down's syndrome testing'. I accept that maybe that's how it's seen as we most commonly see children and adults with Down's syndrome (compared to other trismoies)

It seems to be generally ingnored that these tests also screen for 2 other trismoies that are at best extremely life limiting, at worst result in still birth and are generally leathal at a very young age.

I have experience of a tfmr for one of the other trisomies (t18) and a harmony test in my subsequent pregnancy. I already knew that if the baby had T13 or T18 I would make the same decision and probably have a tfmr. However, if it had been positive for T21 I would more than likely (as certainly as you can be without having the result) we would have continued and put a plan in place.

Nipt tests are not just about terminations or not. They allow parents to put plans in place and put together care plans if they decide to continue. In many cases for babies with t13 and t18 care after birth needs to be fought for and that early care can extend life. This should be an option for all families.

It isn't about irradiating trisomies. I know so many people who have decided to continue a preganancy and have had trisomy babies after having positive test results.

I wish this test was available when I was pregnant. In my first pregnancy I discovered I had a chromosome translocation, making me a carrier for a very rare life limiting syndrome. Despite my pushing for an early CVS the medical team fumbled the situation and I had to wait for an amniocentesis. I hid my pregnancy until 18 weeks and was terrified of the choices I might face.

My next pregnancy I was forearmed. However it took 3 painful separate attempts at CVS, with all the attendant miscarriage risks, and an agonising lengthy wait to get the results.

Even then I was aware that this test had been developed but wasn't yet available. It could have saved me so much anguish, physical pain and risk of miscarriage.

I'm angry at the stance of those people with their own agenda who seek to deny women the information to make choices about their own pregnancies.

Either you believe women have a right to control their bodies, and you accept that this includes the right to make decisions contrary to your own, or you want them kept in the dark because YOU want to force them into an outcome of your choosing. "Don't worry, you'll like the way this ends eventually. You just don't know it yet, and so we can't trust you to make the decision yourself"

I must add I also agree with MrsDeVeve. It is often simply assumed that you will terminate after a positive result. This needs to change. Expecting parents need to be given a balanced view of the possible difficulties your baby may have (all trisomies are a spectrum and this information can be tricky but a worst and best case can usually be given later on 20weeks) verses the possibility of a fulfilling life.

Parents also need to be given information on termination processes. Before 13 weeks is very different to post 13 weeks and post 21 weeks is another process entirely. This needs to be made clear.

This test only gives a % risk, doesn't it, although earlier than previously offered tests?

I refused the what was the triple test as I knew that whatever the risk given, I wouldn't want cvs or amnio to test further.

Diddl a negative screen is a certainty. A positive screen is almost certainly a positive for the condition. Probably not certain enough to have a termination based on it but definitely enough to put a plan together and start booking additional scans etc if the parents make the decision to continue.

Thanks for the replies.

Yes I also agree that the way health professionals react to positive results should be totally neutral and balanced. This does need to change. So yes, let's campaign for better information, more training for midwives, consultants, health professionals generally. Not oppose safer screening. They are two separate issues.

Absolutely eeyore. I 100% agree with you.

An earlier diagnosis makes the termination process much easier for the woman. Most people do want to terminate after they have a chromosomal disorder diagnosed so I don't see any reason for society to make that harder for them than necessary. Women should be able to choose what do and the NIPT makes that easier.

There is no other logical reason for the testing and the amount of money poured into screening for a non-fatal, non-life limiting condition.

I'm sorry, but this is just ignorant and wrong. Some of the conditions found by these tests can be life limiting and fatal. Despite the rhetoric, this is not just about downs syndrome.

Is the country Denmark? Where
The introduction of a combined risk assessment during the first trimester at a national level in Denmark halved the number of infants born with Down’s syndrome (BMJ) and where the Copenhagen Post reported that Denmark “could be a country without a single citizen with Down syndrome in the not too distant future.”

At present 92% of people who have a positive result for Downs Syndrome, have a termination.

Individual decisions are just that but those decisions will hopefully be based on as full a picture as possible.

No, it's the Netherlands. It sounds like in Denmark everyone is given the test? Here it's only if you get a high risk triple test result and the triple test itself is only available to certain groups. The way it's being implemented won't increase detection rates, just decrease the number of amnios.

I had the test done privately at the cost of £500. So I completely agree with it being introduced on the NHS... it already exists, so why should people like me get it and people who can't afford it just rely on a very flawed, inaccurate old test?
Also don't understand that the issue with NIPT basically is ghat it's a reliable form of the current test? /9 the current combined test is fine, because it's so inaccurate?