ANyone refuse the down's syndrome screen?

[Toomanytoomany]

I've just had an irritating conversation with an intake nurse at the maternity unit who just told me I'd "have" to have my GP do the first lot of blood tests at ten weeks because I'll be nearly twelve weeks at my first antenatal visit, and "you have to have the screen for Down's done at ten weeks". (No explanation, no querying whether I'd want it, etc).

I've never had the blood screen for DS done. I know the risks are higher now but I am not prepared to do CVS or an amnio, regardless. All I've ever had done in the past is the nuchal fold test on ultrasound.My inclination is to say no and just go with the nuchal fold test again. I'm thirty eight.

I'm keen to hear other people's experiences.

Oh and I was also told I "have" to see an OB at the clinic on my first visit. I don't want to see an OB. I don't need to see an OB. Grrr. Lack of pregnancy/birth options in this country sucks. I wish I was back at the midwife unit where I had Clare, or my GP didn't live over the other side of the city

[hannahfroodoo]

I didn't have the test with either pregnancy - I didn't even have the NF ultrasound. Like you, I figure I wouldn't have the CVS or amnio anyway and wouldn't consider a termination so I figured I'd rather not have to worry about risk levels which really don't tell you anything anyway! It was never a big deal - they just asked me if I wanted it and I said 'no, thanks' and that was it.

I think seeing an OB for your first visit is pretty standard in the public system. The OB has to assess whether you are a suitable candidate for midwifery care. But that first vist with the OB was the ONLY time I saw an OB until I was having a tear stitched after delivery. If you really don't want to see an OB at all, another option is to hire a private midwife. That's what I'm doing next time!

[babidevil]

If your over 35 then its "advisable" so they say but bottom line its the mothers choice whether to have the screening done or not. Im 33 and having my 4th child and i will refuse to have the test this time as well. You DONT have to do anything you dont want it unless you feel something isnt right.

[LaDeeDa]

Hi Girls,
I also chose NOT to have the tests - much to the disgust of my booking nurse.
DF's brother has downs and his mum was 22 when she had him.
We already decided long ago that we wouldn't abort if it was a DS baby so why bother with the test?

However, I wasn't prepared for having a STAND UP argument with the nurse and the sonographer over it.
Good on you for making decisions and sticking to them

[Chocaholic]

I have refused to have the 12 week scan for both of my pregnancies. I knew that regardless of the result, I would not have the amnio or CVS so I didn't think it was worth it.

Also, I was in my late 20s for both pregnancies so the risk of Down Syndrome was not as high as if I was older. I still think I would have refused the tests regardless of my age.

[MistyFying]

No i didn't have the DS tests for either of my kids. I think you need to think through the consequences of knowing the information. That should help you decide if you want to have it or not.

[kelebek]

O.k while I have never been in this situation myself my aunty was an older mum & this subject as always interested me so I have read different things.

As I understand it you don't 'have' to have any tests, obviously with your age this is one that is highly recommended. The only advantage I see in these tests is that you can either prepare yourself better because you know bub has down syndrome or you have the choice to abort. If this test comes back with a high possibility the next step is the more invasive test which also have a risk of miscarriage. So if you don't want to have the tests I wouldn't, atm I wouldn't have the tests if I was in your situation either.

Goodluck with your decision & congragulations on your pregnancy.

[~Raven~]

No you don't have to have it at all but maybe she was emphasizing that if it's something you want to have done the importance of when it has to be done if that makes sense.

[SamiH]

Hi

I agree it is totally your decision.

However, if you don't want the blood test combo done, why have the nuchal fold measured??? The blood test combo is the way they do it now - with my other two it was just nuchal measurement.

You don't need an u/s at that time - have you had a dating scan? you don't even need one of those and can choose not to have one until halfway then it is advisable to chck progress.

If you don't want it, don't have the nuchal fold measured either.

Also, the bloods are routine before you go through public - results include aids, rubella immunity, iron levels and confirmation preg etc - not just stat number for downs - so you should still have this done.

Hope you have a great pregnancy.

[diannescruffy]

Hi,
I never had the DS test either and I was 37 with my last pregnancy. I also never had the 12wk scan, only at 20wks. Go with what your heart is telling you and don't feel pressured to have any tests you don't want.

Regards,
Dianne

[Toomanytoomany]

However, if you don't want the blood test combo done, why have the nuchal fold measured??? The blood test combo is the way they do it now - with my other two it was just nuchal measurement.

You don't need an u/s at that time - have you had a dating scan? you don't even need one of those and can choose not to have one until halfway then it is advisable to chck progress.

You're absolutely right, of course.

Because I absolutely won't have an amnio or CVS (history of miscarriage and irritable uterus) the thought of having an unresolved "high risk" screen come back for the potential of there being absolutely nothing wrong seems unnecessarily stressful to me.

The idea of not having an u/s done at all until twenty weeks doesn't thrill me, mostly because of my history of miscarriage making me a bit of a paranoid preggy person I think I'm going to just not bother with the blood test. If I haven't had that done they may not even want to bother with the twelve week scan and save me the argument.

I think what irritated me most was just this presentation of information as "you will do this, you will do that". My last daughter was delivered at Box Hill midwifery unit after some initial support from my fabulous family GP. I can tell I'm really going to miss that approach to pregnancy and birth. I just kind of assume that, given this is child #6, I might have a vague clue what's going on.

[Tobily]

I never had it with either of mine.

I just said I wasn't having it, and that was it. I didn't really get any grief - even with the second one where I had a private OB who was very test happy...he didn't have much to say about it surprisingly (since he had much to say about every other decision I made )

[widdly]

I didn't have the test last time and i won't be next time either, its your choice

[myson]

I am kind of in two minds this time round.

I never had the tests with my first two kids. I would never have had amnio or cvs or an abortion, so i didnt see the point. I was a lot younger then.

Now 12 yrs on I am not sure. I would STILL never have amnio, cvs, or abortion. BUT if there is something wrong with my bub then I wonder if maybe knowing about it before hand and being more prepared would help. But of course the tests can be wrong...

They cant make you do anything you dont want to. They can only recommend the type of care they think you should have.

[BeautifulMadness]

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?

[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.

[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...