Opting out for downs syndrome test

[Jayjay027]

I agree with everything babyem has said.
We didn't have any of the tests because we were told that the amnio increased the risk of mc by 10% and I wouldn't have risked it.

I also wouldn't terminate if anything was wrong, so I didn't see the point in knowing something like that in advance. I can't change it so I didn't want to spend my whole pregnancy worrying about something I can't change.

Can completely understand why others would opt to have it though x

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[mishi]

I have been avoiding the Tri section for some time, as its just a bit too hard to come in here, but wanted to comment on this thread.

Having been through the heart wrenching decision of ending my pregnancy due finding out, following invasive tests, that our baby had a disorder incompatable with life, I will be getting the tests again if I am luck enough to become pregnant.

It is not just DS that is tested for with these tests, there are rarer conditions. I would need to know. Like So_hopeful I would want that time to prepare myself and my family and find out everything I could about the particular disorder and the support available in my area for my child.

I completey respect everyone's decision and its a very, very personal one. The journey for me was a very difficult one - when the bloods came back, waiting for the results, getting the results, etc etc BUT although our little bean was very much wanted and very much loved I could not imagine carrying him and feeling him move and loving him every day for the remainder of my pregnancy to then watch him die shortly after birth, or be stillborn. I just couldn't do it.

Sometimes the decision is not whether to have a child with DS it is about whether your child will actually have a life at all.

I would like to clear up the invasive tests issue though, a CVS has a less than 1% risk of miscarriage (where I had mine it was 0.6% risk) and its optional - if your bloods come back as high risk, you don't need to go on and have an cvs or an amnio.x

 

[katie_lou]

i didnt get the downs test as i didnt see the need to , if my baby did have downs it would not change anything and i would not consider termination. I dont believe in terminations but that is my opinion. As individuals we all have the right to our own opinions and should not be judge on them if we agree with terminations or not. We all have the right to make our choices.

Even thou i dont agree with terminations i can understand why some women do terminate there pregancy and i would never judge anyone for doing this.

xx

 

[cosmicgirl]

what a heartbreaking situation mishi.
Neither myself or my husband could afford to give up work to look after a child with ds, I've had to consider the impact on my other children and as I said have based my choices on working with ds children every week.
I'm quite clear in my mind now but how I'd deal with it once I was actually faced with the reality of results - who knows. I hope and pray my results come back low risk. It's giving me nightmares and I'm really anxious about it
Having nuchal scan and combined bloods on Monday, I'm dreading that part to my core x

 

[katie_lou]

what a heartbreaking situation mishi.
Neither myself or my husband could afford to give up work to look after a child with ds, I've had to consider the impact on my other children and as I said have based my choices on working with ds children every week.
I'm quite clear in my mind now but how I'd deal with it once I was actually faced with the reality of results - who knows. I hope and pray my results come back low risk. It's giving me nightmares and I'm really anxious about it
Having nuchal scan and combined bloods on Monday, I'm dreading that part to my core x

awww hun ...try not to worry xxx

 

[cosmicgirl]

Thanks hun, I don't know why it's worrying me so much but I'll be so glad when it's over with.
I suppose because I work in a major children's hospital and I see very disabled kids every day, I realise how fragile life is x

 

[Jayjay027]

I would like to clear up the invasive tests issue though, a CVS has a less than 1% risk of miscarriage (where I had mine it was 0.6% risk) and its optional - if your bloods come back as high risk, you don't need to go on and have an cvs or an amnio.x

The doc at my hospital told me it was a 10% risk.

And if my bloods came back as high risk, I don't think I could cope with the worry and not have the invasive test, so that's why I left it.

I can completely understand why other women choose to have the test though, and I can't begin to comprehend what you went through x

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[jojo3972]

as i am 39 that q is going to be asked more so than a younger person but i wont have it done it does not matter to me i will love and care for a downs child as much as i would a healthy child so no i wont opt in for it xxx

 

[cosmicgirl]

For those opting out I'd like to ask, are you not concerned about the other disorders that the tests pic up, such as Edwards syndrome and Pattau syndrome? Some of the syndromes tested for are not compatible with life.
I'd also like to add that the whole "we'd love our baby anyway" gets to me a little.
A few ladies have said that they couldn't carry a disabled child, doesn't mean that they don't love their babies more than anything in the world x

 

[wifeywifey]

For those opting out I'd like to ask, are you not concerned about the other disorders that the tests pic up, such as Edwards syndrome and Pattau syndrome? Some of the syndromes tested for are not compatible with life.
I'd also like to add that the whole "we'd love our baby anyway" gets to me a little.
A few ladies have said that they couldn't carry a disabled child, doesn't mean that they don't love their babies more than anything in the world x

Would be nice if mw bothered to explain this to us, I opted out because if my child had ds it wouldn't matter to me however if I had this info I may have reconsidered. I understand what your saying but its not something they seem to bother telling us.

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[cosmicgirl]

My mw went through it in detail and also gave me a leaflet about syndromic testing procedures which was quite in depth. I can appreciate that not everyone is given a lot of info, or maybe all trusts don't provide this service maybe? x

 

[katie_lou]

i agree with wifeywifey midwifes dont give info .... 9 time out of 10 my midwife had me in and out before i could even sit down.

 

[cosmicgirl]

That's awful! How can you make an informed decision of you aren't informed. My midwife spoke about a nuchal test, a nuchal test plus bloods (I think this is called the combined test?) and the integrated test x

 

[wifeywifey]

i agree with wifeywifey midwifes dont give info .... 9 time out of 10 my midwife had me in and out before i could even sit down.

Yeah my mw was same unless I had a problem all I got was "do you want ds test?"

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[cosmicgirl]

That's awful. The booklet was posted to me about a week before my mw appointment so that I could discuss it with the mw when I saw her x

 

[katie_lou]

That's awful! How can you make an informed decision of you aren't informed. My midwife spoke about a nuchal test, a nuchal test plus bloods (I think this is called the combined test?) and the integrated test x

i have never heared of a nuchal test ? what is it ...sorry if i sound stuiped but none of this was ever disscussed with me xx

 

[cosmicgirl]

During your 12 week scan the sonographer will take measurements from the folds at the back of babies neck (nuchal folds) and this can be a soft marker for ds meaning that further testing may be required x

 

[babyem]

It doesnt bother me that it detects other problems, because I dont care if my baby has 11 arms and 2 heads, I'd still love them the same. I want to give my baby a chance in life, I knew what the consequences were when I chose to have a baby.

 

[babyem]

I would like to clear up the invasive tests issue though, a CVS has a less than 1% risk of miscarriage (where I had mine it was 0.6% risk) and its optional - if your bloods come back as high risk, you don't need to go on and have an cvs or an amnio.x

The doc at my hospital told me it was a 10% risk.

And if my bloods came back as high risk, I don't think I could cope with the worry and not have the invasive test, so that's why I left it.

I can completely understand why other women choose to have the test though, and I can't begin to comprehend what you went through x

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All the info we have been given, as well as advice from my consultant was that there was a 10% risk. I wouldn't want to take any risk x

 

[Jayjay027]

I only found out that it tested for other problems through this thread. I was never told that it tests for anything other than ds, which I'm actually very peeved about because I'd have liked to have had all the information!

But I probably still wouldn't have gone for it tbh. I just want to enjoy my pregnancy and right now I am really loving it. And I would never go for the amniocentesis just in case x

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