I turned down the Downs test!!!

[Takara]

Am I as mad as my midwife thinks???

With my son I was high risk downs, his dad and family pressured me into the amniocentesis because they said they would have nothing to do with a downs child (yes I know I'm better off out of there) I had complications after the amnio and it didn't lower my risk factor very much. The family encouraged an abortion but I refused. My son was born without downs.

This time round I have declined the test because although it might be nice to have a 100% either way so I could be prepared it wouldn't phase me having a child with downs. I think the stress of a 1/45 chance or whatever is worse to stress over than just not knowing or caring.

Am I completely mad? As I told the midwife I would refuse an amnio so it's pointless taking the first test. If you can tell me 100% he/she is or isn't then I would but as you can't I'll just wait and see. She in not so many words that she didn't agree with my opinion and I shouldn't risk bringing a disabled child into the world without knowing first.

Thank you for input.

Xx

 

[vampybear]

the first test is not invasive at all, so i suppose i wouldnt have been bothered doing that one, but then the issues you had last time- i can understand why you wouldnt want to do that!

I imagine your midwife said what she did coz what she means is that if you knew it was very likely to have disabilities, you could seek the right advice (emotional, practical advice for any medical needs and what you will need to access once they are born) during pregnancy so its not so much hard work to try and learn and sort once baby is already here, crying, pooping and needing constant feeding.

If i was in your position, i would probably take the non invasive first test, coz you never know it might already say its looking all fine. But if it doesnt, i would find out more about their percentage rates of accuracy on the future tests and then decide whether to go through that again or not.

Its a tough one, but dont let anyone tell you what to do, only you know best!

 

[gde78]

I think ur very brave. My second daughter has got DS and I did have the amnio so I knew and could 'prepare'. It was the right thing for us to do although it doesn't really help u prepare other than u know one way or the other. Evie is a beautiful happy little girl who brings so much joy into our lives I don't regret any of our decisions for one minute. Sure it can be harder work at times and u have to deal with staring and questions. There isn't a day that we go out that we don't get stopped when we go out for someone to tell us how beautiful she is. I'm sure ur baby will be fine but don't let ur husband and his family pressure u. People with DS are amazing and look at the world in such a unique way they can do nothing but make the world a better place. Good luck Hun xxxxx

 

[Takara]

Even with the amnio you can't be guaranteed a yes or no answer. And with the first all you get is a percentage risk. Even 1% is a risk.

Thank you for the feedback. Xx

 

[karla1]

i too have refused testing this is my first and my reasons for declining are that no matter what the percentage was i could never and would never abort my child and i would find it more stressful worrying for my whole pregnancy about everything that could happen

so no you are not mad

 

[_Lexi_]

I got told amnio and cvs are both 100% accurate as they directly test the chromosomes of the baby?? I had a cvs done on Monday. Just remember it's not just downs they test for, it's any chromosomal abnormalities x

 

[smileygurl85]

We turned it down too. It's all risk percentage and so uncertain.

In my opinion - too many people end up stressed unnecessarily because of the numbers.

The results wouldn't have changed our minds with regard to having the baby - so we decided to skip it. The dr. thinks we're loony since it's non-invasive - but it's our choice.

 

[gde78]

Lexi I was told this also. They are diagnostic tests so give u a yes/no answer. But I assume with any test there is an element of human error. When Evie was born they repeated the test as she didn't show any signs of DS.

 

[gde78]

I mean the amnio and CVS. The Nuchal scan is a percentage!

 

[Kess]

My husband and I decided not to have the NT test since we knew we'd not have the amnio due to the risk of miscarriage. The NT has a high rate of false positives so there's every chance we'd have been worrying over nothing. Both our MWs (1 NHS, 1 independent) totally agreed that if you won't have the amnio then it's best not to have the NT test - in fact when she asked whether we wanted the NT and DH and I looked at each other, MW asked if we'd risk the amnio and when we said no since we'd not abort no matter what she told us not to have the NT then. I think you've just got a daft MW OP!

 

[_Lexi_]

I wouldn't of aborted a ds child. But when mine came back high risk, 1 in 21, it's not just downs. They told me they could have any conditions resulting in lifelong problems, stillbirth/miscarriage. I personally wanted to be fully aware and able to be prepared for whatever may happen. Everyone makes the choice that is right for themselves, and Sunday and Monday were horrible with the stress and the worry of deciding. To me, the very low risk of miscarriage with the cvs, didn't compare with the very high risk of something being wrong. Don't refuse it just because you wouldn't abort a ds child, it prepares you for whatever may be. Thankfully I got my results back and my baby boy is completely healthy, but now I know that for a 100%, I can relax and it's one less worry of my mind x

 

[kat2504]

I am happy to have the blood tests and the NT (because i want the scan anyway) but it would take a massively high risk to make me even consider CVS or amniocentesis. If it was just a risk for Downs I wouldn't do it, I'd just carry on anyway with my fingers crossed. But there are other abnormalities that are a lot more serious than Downs and unfortunately mean the baby can't live. I guess I'd rather know that at 16 weeks than 40 weeks.

 

[Mid.night]

My husband and I decided to decline the test.

As it's only a 'risk factor' I didn't want to spend my entire pregnancy worrying. I have had two losses and worry anyway. I would never ever take the second test with the risk of miscarrying.

We will love our baby no matter whether it's completely healthy or has any medical problems, and if it does we will just learn to cope, love will see us through

 

[Takara]

I had my amnio in the uk 3 years ago and I got back a 4 in 75 chance. So not a yes or no. I asked the midwife and she said that until birth they can't give you a yes or no answer. I have only declined the downs test not any of the others that can give a yes/no answer.

Xx

 

[PoodleMommy]

I'm refusing all diagnostic tests as well. There are too many false positives. Also, even with amnio where they are directly testing chromosomes, they can misread mosaic Downs as "full" Downs syndrome. With mosaic DS, only a small percentage of the cells are affected, and because of that, the person can go through their whole lives without anyone realizing they have any amount of DS in them (they don't present with the classic symptoms). I wouldn't abort under any circumstances, and figure I can deal with anything I need to deal with once the baby is here.

 

[mummymarsh]

CVS and amnio give definate answers but its not always possible to gain the right amount of tissues or fluids etc so the test may not be successful....

also my friend had the DS screening and was low risk and everything was perfect at her scans, no markers etc and her daughter was born with DS, however it has bothered them at all and isabella is now 8 months old and they are expecting child number 2 xxxxx

 

[Mummy of Ange]

I refused mine this morning and i did with the twins. Even if my child does have downs, i would never abort so its pointless to me. Your not mad xx

 

[AngelUK]

Everyone seems to only concentrate on Downs but there are other chromosomal abnormalities and genetic illnesses that are quite horrific. Have you looked up Trisomies 13 and 18? I do believe that it children with certain abnormalities and genetic illnesses are born into nothing but suffering. Don't get me wrong, though I am pro choice, I do not think abortions are no big deal. I would break my heart if I had to have one. But there are certain conditions where an abortion would be kinder than giving birth.
Saying that, I respect every one's opinion and choice here and I am not trying to sway you into another decision. Just trying to explain that I will definitely have the further testing if I turned out high risk. Wishing you all a h&h 9 months.

 

[FayA]

Your midwife seems a bit rude! Since when was it her right to tell you what to do with your baby because of her own opinions!

I am pretty certain that I will refuse all diagnostic tests, for me I just think that even the small chance to miscarriage is not worth it! We've longed for a baby for a while and If there was anything wrong with my baby (or future babies) then we would deal with it! There are millions of disabled people in this world who can cope just fine and often live independently, every baby is a miracle and even if the outlook looks bleak for them, there are loads of people that defy the odds and go on to live long lives, my cousin in law was only given til about the age of 1-2 to live and he's just celebrated his 22 birthday! and personally I wouldn't say there was much wrong with him to be honest!

So for that small chance that something could be wrong with them I don't think it is ever worth considering an abortion! x

 

[Sew_Sweet]

I refused the test the first time and I refused it this time as well. I'd love any child of mine no matter what. DS children can and usually are highly functional and very sweet children.