ANyone refuse the down's syndrome screen?

[OceanPrincess]

I'm just going to second Sami's point - if you are having the NT screen at the ultrasound, you should have the blood test.

Unless at the scan you plan to say to them "please don't tell me the NT measurement" or "dont measure the nuchal fold", if they measure it, the risk factor they will give you is only 70% accurate. If you include the blood markers then it is 90% accurate. Makes sense to have both.

But if you are saying you want the 12 week scan but don't want the nuchal fold measurement/DS screen, then that's a bit different! Its personal choice - you should stand up for what you want

Congrats on the pregnancy and wishing you a H&H 9 months!!! Hope you find a good carer!

[Toomanytoomany]

Yeah i think if ur over 35 then highly reccomend u having one done. I though that u had to have one no matter what, i had it done.

i dont understand why you wouldnt want too...but its ur choice. I think it was pretty rude of the nurse not to explain or even say to u do u have any questions?

The blood test combined with the 12 week scan will not diagnose, it will only give a risk. The only way of definitively diagnosing is to do a CVS or an amniocentesis.

I am not prepared to have either of those things as I have a history of miscarriage and preterm labour. So, I would get a "high risk" result for a test that couldn't be confirmed, with all the stress that would involve, and the risks of stress to a pregnancy are proven.

So, if there is no way I'm going to have the diagnostic test done, then the risk to me and the baby of having the screening done does not outweigh the possible benefits.

See, this is the thing that annoys me with the way the medical establishment can present testing sometimes - they often don't bother clearly explaining the downside and it's up to the mother to dig up the information so she can make an evidence-based decision.

[Toomanytoomany]

Tali I appreciate your POV but regardless of what the rest of my family thought, an abortion would be absolutely out of the question.

If refusing the test might disqualify me for midwife care I might have to reconsider, as the stress of not being able to access the care I need has to be factored in, too.

Sigh, so much to think about.

[HotI]

As OceanPrincess wrote, You can have an ultrasound and request that the NT NOT be measured.

The attitude of the nurse was horrible, and i am glad that you are aware of your rights to question the medicos and your right to refuse testing.

I really feel for those who are pressured into having these tests without having the implications of the tests explained to them. It might be fine, if the test comes back ok, but if a test comes back high risk and the Mum hasn't had it explained to her, it will be more unsettling.

Even more worrying is if the Mum is not aware that she does not have to continue with further, more invasive testing.

Thanks for bringing this issue up, it may help another Mum in the future.

take care,

k

[satya]

If you wouldn't have an amnio or CVS if you get a bad result then there's not much point in getting the measurement or the blood test done really. It only gives you a risk factor and if it comes in high (like mine did - 1/37 for DS) you would spend the rest of your pregnancy extremely worried about your baby.

However I must point out if you do go ahead just with the measurement and get a 4.2mm measurement like I did you may change your mind about more invasive testing. It's something you can't know what your decision will be until you actually have to make it. I'm sure most women who go on to have amnios & CVS thought they never would have one. I had a history of miscarriage & a 14 year TTC history behind me yet still when I was faced with what I was I felt the need to have further testing. I was also 41 at the time so realistically it could well have been my very last chance at becoming a mum yet I still went ahead with the amnio despite the m/c risk (it is actually a very small risk if you research it properly).

My bub was born completely "normal" as the amnio predicted but I can assure you I would have had an even more stressful pregnancy than I already had if I had not had the amnio.

I guess what I'm saying is if you are absolutely sure you would not have invasive testing do not get either the NT measurement or the BT done as you could well come up with a high risk due to your age which will only add more stress to your pregnancy.

[Katiegirl]

I have never had the blood tests done - just the scan at 12 weeks. We are the same, we know we would not have an amnio or CVS nor would we terminate, so why add stress to a pregnancy by getting a high risk. The nurse should respect your wishes. I have noticed that some drs etc seem to not to let women know they have a choice about the down's test.

[jmmum]

Well said Tali. Appreciate and praise your honesty.

[Jesswith6]

I haven't been in your position but I have had 6 children.
I have never ever had in any of my pregnancies a NT test or a blood test for DS.In fact I had never heard of any of those tests before 2 yrs ago when I joined.
I have one child with a disability (Aspergers) and was considered very high risk as I am also RH neg!
I was told during my last 2 pregnancies I was told that I had to have an Amnio but like you I would definately refuse it.

[OceanPrincess]

The blood test combined with the 12 week scan will not diagnose, it will only give a risk. The only way of definitively diagnosing is to do a CVS or an amniocentesis.

Just have to say that this is not true... for CVS anyway... it will rule certain things out but even then the things it rules out are not ruled out 100%, as I have found out...

So then you could end up in an even worse situation where all these experts tell you "something is wrong" but nothing is turning up on any of the tests...