ANyone refuse the down's syndrome screen?

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 :(

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!

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.

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 :)

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.

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.

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.

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.

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.

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

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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.

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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.

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 :rolleyes:)

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

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?

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.

My gosh if you haven't had an u/s yet with a history of m/c and irritable uterus - you are soooo not paranoid preggy - you are very brave IMO!!!! I was shocking this time around and had 2 before I had the 12 week one!

Maybe yeah they wanna rule out any high risks if going through midwife clinic or similar with your (our) age :)

Good luck with your journey - hope you have a different middie next time ;)

Ok I wasnt going to post as most of you are against the idea....but for some unknown reason I am here anyway...

I too have never had any testing done with any of my babies..... But I think if we get PG next year as we hope then this time I might consider it as if I knew I was having a child with disablitys I dont know if I would go through with the PG... my reasons are as follows...

* this would our 4 th baby so a child with a disablity wouldnt just be BHL and my choice to bring it into the world I have to think of my other children, as in the end it will be them who will have there lives changed the most... I understand that they would deal with it and they wouldnt know any different in the end BUT I would know that I put them in this situation it was my choice to continue not theres, but it would be them who would have to look after the child once we die...

* BHL works away so this would also mean a change in the way we work as a family he would have to get a job which would bring him home more...

* A 4th baby is alot to take on anyway let alone a child with so many needs would I be taken away from my other children and would this be fair to them...

For these and other reason I think I would have the testing done this time around as we would have to consdier alot of things IF the child was going to have a dissablity.... Of couse this is easy for me to stay ATM as we are not PG so it might be a very different story once I am... Please dont judge me for my point of view... But for me when you have other children to think about then it not just how I feel about it anymore its how the whole family feels about it, so I would feel irrasponsable if I didnt get the test done next time around....That and this time around I will be 30 and I know thats not old to be having a baby but when you have had all your other in you 20's it feels old to me LOL so other reason why i would get the test...

tali - your post is what I like about BB - free to share - and I do agree with your reasons personally too.

And you are soooooooooooooooo not old :p

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!

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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?

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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.

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.

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

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.

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.

Well said Tali. Appreciate and praise your honesty.

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.

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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.

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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...