Testing for Down's Syndrome

[Pippaandpolly]

I am wondering how many women decide to have the tests for Down's Syndrome? We are leaning towards no, because if our baby did have it there'd be no question of termination, but yes because it might be good to be able to prepare. Overall we're more for no than yes, but it's confusing! So if it's not too personal a question, did you/will you have the test?

Which test do you mean - there are a number, some invasive and diagnostic, others non-invasive but not giving you a clear answer.

I had blood tests with all 3 of mine but nothing more. Not sure why I had that much tbh.

I don't think you'd need to prepare that urgently. Babies with Down's Syndrome have pretty much the same feeding, sleeping, attention, care needs as any other baby. It's more as they get older their needs will differ.

I'm 36 (35 at conception) and chose not to have any tests - like you, we felt that it was not reason enough for termination and I could not have taken the mental pressure of driving myself mental with worry for another 6 months.

As we approached the anatomical scan at 20 weeks we both realised that there were "degrees" of disability we could handle - e.g., I'm not sure I could've taken on a child with enormous heart problems. However, luckily the anatomical scan showed absolutely no problems with the heart.

Yesterday (29+6) we saw our baby's face for the first time (3D scan) and we now have no doubt in our minds that this baby is free from Downs. My boyfriend told me afterwards he was really relieved as he'd still been (secretly) worried - I however had (mostly) forgotten all about it. The anatomical scan had put my mind at rest - that and the fact the baby didn't stop moving for months at a time! I just felt in my heart that a baby with problems would've been quieter in utero.

As for preparation - well, I took the attitude that if the baby were to arrive with Downs then we would handle everything as and when it happened. The medics and social services would point us in the right direction and we'd not have been totally abandoned without a clue of what to do.

Hello
I am 35, currently 24 wks preg.
We (mainly led by my feelings I will admit) decided not to have any tests specifically for downs. This is because I know that I could not have faced, mentally and emotionally having the 'choice' to terminate if it was found to be affected. Also by the time I would have found out I was already feeling the baby move etc and felt bonded to it, whatever.
Luckily our 20 week scan showed nothing to suggest Downs, although really none of us ever know whether we will have a totally healthy baby until it is in our arms!
Things can and do go wrong during birth as well as before so in the end a lot of it is up to fate i think
Good luck

Downs is only one disability that babies can have. I grappled with the whole amnio thing and got great advice and info from a variety of sources.

Even if you have an invasive test it can only tell you that your baby doesn't have certain genetic issues or abnormalities as the medics call them.

There are lots of other things that can happen which we have no control over or can't legislate for. I have very quickly become quite anti-testing to be honest.

I just find the whole thing an emotional minefield and ideologically it just doesn't fit well with me. However it is personal choice. I am not sure why women in low risk groups though are routinely tested.

My main issue is I am not sure, from my experience, and that of people I know, enough information is given and women are swept along into ante-natal testing without proper preparation of what that might mean to them.

But I suppose some people have better experiences than others.

i have always refused all tests for abnomalities apart from the anamoly scan as I know that I would not go for a termination or want to get a definitive answer with a test that could cause a miscarriage.

The problem with testing for Downs syndrome is that there is such a huge range of ability within the spectrum and there is no telling how severely your child would be affected if the result was positive. Many individuals with Down's syndrome can live independently whilst others need round the clock care and the tests cannot tell you that.

I also agree with fifitot there are so many other disabilities and genetic conditions that we don't test for which in my opinion are far more devastating than Down's syndrome so it only gives part of the answer. I used to be a paediatric nurse on a neuro-surgery unit and to be honest there were far worse conditions than Down's.

Thank you all for replying - you've basically confirmed our reasons for leaning towards saying no. It's scary how much there is to think about - and these things seem to need to be decided so early on.

I am now off to buy a notebook to write my pregnancy diary in

My friend's sister had the tests, found out carrying a girl with down's syndrome. Apart from knowing, it didn't make the prep really any different as you can't tell the level of disability.

I could have written exactly the same post as guiltyandfedup
I'm 37 and have turned down the screening bloods as my age alone will put me in the 'high risk' category.
But to me, that's what it is... a 'category' and this is my baby, who I have bonded with and I can feel moving.
I never even questioned whether or not to have the tests with my last pg, aged 27, I was just swept away with having whatever was offered, not realising you can say no if you want.
Good luck x

The blood test/nuchal scan pick up a lot more than just Downs, the same "soft markers" can indicate other trisomy problems such as turners or Edwards, or heart problems.

The diagnostic tests will tell you what the problem is, but with some risk.

You should bear in mind that if a baby has one of these problems, it is MUCH more likely to miscarry or be stillborn. Even with Downs, which has a higher degree of "survivability" than the other trisomies, something like three-quarters of affected babies will miscary usually in the first 4 months, be stillborn or die in the first week after birth.

With turners and Edwards babies, more than 90% are lost early, or die soon after birth.

I'd rather know. even if you are against termination, you can prepare for the possibility losing the pregnacy, and in the case of heart problems, the sooner the diagnosis is made, the sooner they can prepare to operate (sometimes even in the womb).

I have every blood test offered (there's no reason not too, it's putting knowlage in your hands, it's not forcing you to do anything further).

I have also had CVS recently, due to high risk (all was fine).

We decided not to have the nuchal fold test (the blood test isn't available on the NHS here) because we wouldn't have gone for amnio, given the risk of miscarriage with it, and getting a risk score wouldn't give us any answers anyway and would just make us worry.

Message withdrawn

I just had the normal blood tests (blood group, iron levels etc) but none of the screening blood tests - I knew my age would push the risk higher and there is no nuchal scan here anyway. The bloods would only give a probability. I do not want an amnio or cvs for any reason because of the m/c risk and I would not terminate anyway.

My only interest in knowing any disabilities would be to prepare - so I trusted that the scans at 13 and 20 weeks would spot major issues, such as heart problems, that could be planned for and operations planned if needed.

I have never presumed that DD or the DC I carry now would be 100% healthy; all pregnancies and babies are risky to me - they could have autism, blindness, deafness etc all invisible until birth. There could be damage at birth etc. Children are unique unknowns so I just want to take them as they are.

I understand others feel differently but for me any screening bloods would have added pressure from staff to have the amnio or cvs and left us needlessly worrying. If there was a major trisomy condition incompatible with life I would still carry the baby as long as the pregnancy lasted, and I don't think my grief would be any less for ending it earlier. Far from it, for me that would be harder as I would have done something actively to end the baby's life - even though I understand it could not live longterm.

I can read up on downs, edwards, turners etc once the baby arrives if there are problems - and then I will be able to see how affected the wee one is too rather than the huge range of possible outcomes for all these conditions.

I went to my doctor to get the midwife stuff sorted yesterday and he seemed to be suggesting that I would be offered an amnio automatically because of my age (40) which surprised me. I am going to ask the midwife about the Nuchal fold and triple test because I am pretty clueless about it. My main worry is that as I am 40 my age will put me into a high risk catagory anyway.

My DH and I have talked a bit about it and we know that in an ideal world we wouldn't want a baby with severe disabilities and we are worried about the possibility of having a baby with Downs syndrome and how that would effect our lives later on. Being older parents (Me at least) we may die before them and I know nothing about what this would mean for our child. It is unlikely that we will be able to provide siblings.

However, I am still a bit non-plussed about the point of having these tests if all they will do is say we are high risk. I am not sure that I would want the amnio if that were the case.

forgot to say - with or without the tests I would still worry.