Not having Down syndrome testing- anyone else?

[amy246]

After being too far along for the nuchal fold testing, I have since declined the quad test. I feel that at 17 weeks I wouldn't want an abortion anyway. The only thing is I'm worried this is a silly idea and that I should have just had it done anyway. Any thoughts? Anyone else declined the test? I think I just need to hear that other people also did this.

[ithoughtofitfirst]

I declined last pg and then again this time. I definitely felt that they thought it was a bit radical but the amount of 'declined' i'm seeing on this thread makes me feel a lot better about it!

Why would they give you the option then look at you like when you decline?!?

[Trooperslane]

Like others, I knew mine would come up high due to age.

That plus it doesn't give you a yes or no meant I didn't want to spend the whole of the pregnancy worrying.

Sonographer at 20 week scan was a bitch about it.

Was all 'I see you've refused testing - you do understand that this is the foetal anomaly scan ie we're looking for things wrong with the baby, not to see what the sex is'

Like we were two daft kids wondering which colour we were having.

I was raging but too anxious to say anything. Cowbag.

Dd is fine.

I also can't get my head around what the big drama is about downs etc testing - like that is the worst thing that can happen?

Don't want to minimise but surely other more difficult things can happen? Is it that we can test for it so the NHS is trying to force it. I hope that's not insensitive to anyone going through this.

[Heathcliff27]

I had with my first child, I was 21 very naiive and clueless with an old school midwife. It wouldnt have made a difference whatever the outcome. Age 30 with second pregnancy and 36 with third, didnt have any tests with them.

[CoolCat2014]

I didn't have the test. I would never abort, and if the chances were raised it would prob only make me worry - I can do without the worry!

[ILoveCwtches]

I refused the test. I know it tests for more than just Downs but I wouldn't have had any further tests or aborted, regardless of the result.

My younger sister has a relatively rare chromosomal disorder and, as a result, I have always been scared that I would have a child with one (her syndrome is not hereditary but obviously having it in the family increases the risk, slightly).

I hate how it has affected my parents' lives and my life, but I adore my sister and to consider aborting if I had a high risk of having a baby with a condition like she has, has always felt like I'd be saying I don't think she should have been born.

I appreciate that sounds like a leap but it's how I've felt for years. Dd is nearly 1 and adores her Auntie.

[littleducks]

I didn't have it in any of my 3 pregnancies. I never met any resistance to the decision.

I was unimpressed that in the last pregnancy the midwife showed me a picture of a child with downs smiling and said I could test to see if my child would be like that. I didn't think that really helped illustrate how difficult a life with would be with a child with additional needs.

[TheKnightsThatSayNee]

I didn't test. I can't imagine what having a child with Down syndrome but I feel I could cope. I don't have any other sen children, I'm financially stable, 2 parent family etc etc. No judgement on those who feel they couldn't continue with a pregnacy, that's their choice and I fully support their right to make it.

[TheKnightsThatSayNee]

Midwife was supportive

[moobaloo]

I didn't have it. I was considered low risk anyway and knew I wouldn't risk miscarriage if it was high and wouldn't abort anyway, so there was no point. Midwife was very supportive and said that they usually say not to do it if it wouldn't change your mind about the pregnancy. Not had ds yet but I will love him whatever

[ToriaPumpkin]

I refused it in both pregnancies, my BIL has a genetic condition that can be hereditary but there's no test for that (and it's not life limiting) so it seemed odd to test for yet another condition we wouldn't terminate for when they couldn't check for the one we're most at risk from.

It obviously isn't unusual here as nobody even batted an eyelid!

[PenguinsEatSpinach]

It is a perfectly valid decision, but worth bearing in mind that not everyone who accepts testing does so because they would terminate. For example:

• the testing assesses risk for Edwards and Patau as well as Downs. These are largely incompatible with life. For some people, even if they wouldn't terminate for these conditions, having time to make peace with the high risk and plan is important.

• for high risk of Downs, some people see it as an opportunity to buy time to learn as much about the condition as possible and be as educated as possible for choices after the birth

• for those who might otherwise plan a home or standalone MLU birth, it can inform decisions on place and mode of delivery.

Just some things to think about....

[sittingatmydeskagain]

I declined tests with my two. First time, midwife didn't comment at all. I didn't realise I was unusual. Second time, midwife was confused by my decision, and offered to cancel the 20 week scan too. I had the 20 week, though.

[charitymum]

The only reason we had it was because there can be greater risks at or after birth that can be prepared for. The results were all ok as it turned out. We did though insist that it was written on our notes that if positive abortion was not - for us - an option to explore for Downs and that we did not expect this to be mentioned.

[hickorychicken]

I declined, i didnt want to be left with the choice of anything if it came back as a chance.

[Swanlike]

The age thing might be a bit of a red herring - first pregnancy (age 41) risk was 1 in 250, second (age almost 43) risk is 1 in 2000? I had the test as I'd want to know about any potential problems before giving birth, not because I wanted to terminate.

[behindthetimes]

Never crossed my mind to have the test.

[GiveTwoSheets]

I refused the tests on the grounds it wouldn't of changed anything for me and that I had enough stress and crap going on at present time that I wouldn't of been in great frame of mind to deal with anything else but I would be able to deal with anything after baby was born if was faced with it.

[eurochick]

As others have said, the tests are not only for Downs Syndrome. I had them (and in fact had the Harmony test as well) despite having discussed beforehand and agreed that we would not abort for DS. However, we would have for a condition incompatible with life. Moreover, if DS was found, we wanted to have time to prepare (and to take steps to make sure we and medical staff were aware of any issues that might need to be addressed at birth). In my view, the considerations go beyond whether you would or would not abort for DS.

[BrokenBananaTantrum]

I had the tests. Not because we would have terminated the pregnancy but because we wanted to be prepared. If our baby was going to be born with additional needs then our plans might have had to change in terms of me returning to work or in other ways. I wanted to be as prepared as possible. I totally understand yours or anyone elses decision not to test though. Go with what is best for you. X

[Ragwort]

I did have the test, I was advised I was 'high risk' at age 43 - the test was clear however DS was born with a condition that is so rare it could not have been tested for - (was able to be treated) - there is no 'certainty' in life when you choose to have a baby.

[StupidFlanders]

I would urge everyone to have the scan- in my case it would have picked up health concerns that then weren't identified until 20 weeks and it was hell.
As broken bones said; some things need lots of preparation.

[ruth1104]

So glad to see I'm not the only one refusing! I was wondering if I was being daft. But when I said to my midwife that the results wouldn't affect our decision to keep the baby, and I didn't want to risk miscarriage by amniocentesis, she did suggest that the nuchal screening might just give unnecessary stress for no reason.
From the research I did the risks of mc from amnio are higher than the likelihood of the more dangerous chromosomal abnormalities, so that makes sense to me.
I work with people with profound learning & physical disabilities and the vast majority developed issues after birth so I'm not sure that knowing about a some specific issues is the be all and end all. There are so many things that can happen at any stage of pregnancy, birth or childhood and I'd rather not be always trying to see into the future. That is completely my own feeling and I can understand why other people have the tests.

[polkadotdelight]

DH and I discussed it and declined. Nuchal fold testing isn't offered in Wales so it would be a blood test only unless we went privately. The midwife said the blood test was only 75% accurate and we wouldn't risk a miscarriage by having an amniocentesis. We are in agreement that we wouldn't terminate for Downs and we could potentially worry for nothing. I'm having Consultant led care and she seemed happy enough with our decision.

[HemlockStarglimmer]

I was 42 when I got pregnant and didn't have any tests. I was havering about it and the consultant I discussed it with pointed out that as I had said I would carry on with the pregnancy whatever the outcome then there was little point in testing.

I have a cousin with Down's so know a little about it.

[Cariad007]

I would urge people to have the test merely because Downs isn't the only trisomy they test for. Edward's and Patau's syndrome are incompatible with life and I think it's kinder to terminate than run the risk of a late miscarriage, stillborn baby or baby who will suffer dreadfully before dying a few hours after birth.