Down syndrome test

Hie all mummies and mummies to be. I'm 13 weeks pregnant as part of my pre natal screening, I had the Down Syndrome screening done. I've had 5 miscarriages and one still birth at 6 and half months. After that, I struggled to conceive for 5 good years. My partner became very hostile and abusive towards me. On the 7th of Jan I found out he had a child with someone else so decided we go our separate ways, then on the 10th I went to GP with a UTI which turned out I was pregnant.

Sorry for going on and on but this is the only time I've gotten to say this to anyone coz I don't want people to judge me.

I got a call from a midwife at my local hospital to say my DS results came with a high chance of my baby being born with DS. She said it was a combination of my hormones and my age (37) that put me at a 1-95 chance.

I'm really worried because of the way she spoke. It was almost as if she is certain baby will have DS so I really have to decide if that's what I want. She was short of advising I terminate. The next test I can have to know for certain has a risk of miscarriage. That's a no no considering my history. The other non evasive one can only be done privately and is £300. I can't afford that. I'm out of work due to this high risk pregnancy and barely managing.

I'm going through hell psychologically. I am supposed to be happy and enjoying my pregnancy but it's been such a painful journey so far. Anyone been through this DS testing.

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9 Replies

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  • I think the important decision to make is if you would consider a termination if the child did have downs. If a termination is in not something you would consider then doing the test might not be as important.

    Have you discussed the procedure with the person who would do this, and find out what the actual risks are in term of miscarriage in % terms? Is it worth speaking to family to see if anyone can help financially for the private test? Is there anyone you can speak to about this, friends or family? Ultimately the decision is your but sometimes sharing helps seeing things more clearly and Having all the information you need to decide

  • A 1 in 95 chance - is just that, a chance. doesn't 100% mean your child will have downs.

    If I were you I would think about what it would be like to raise a child with downs. Maybe go on a downs support website which has a forum, and speak to parents that have been through the process of tests and what is like to raise a child with downs. If you have a good relationship with you gp might be worth talking to them, asking what support would be available to you if your child did have downs - there is lots of help out there.

    Just think you could prepare yourself to have a downs child and they could be born fine.

    Make a decision that you feel is right for you, it's going to effect your life - don't let drs push you into something that you are not comfortable with and vice versa.

    Wish you the very best of luck.

    Take care.

  • So sorry to hear about what you're going through. What I would say is, yes, whilst 1:95 is classed a 'high' risk of DS, in reality it's not actually that high - someone used the following analogy with me and it really helped. Imagine you have a bag of smarties; 94 green and 1 red; what are the chances you'll pick out the red?

    Seems silly but when you put it in to that kind of perspective it's reassuring. As roxannacar has said, it also depends on whether you would keep the baby if it did have downs - if so, there is no point risking this pregnancy.

    As you are already in quite an emotional place I think the additional scan would be really helpful even if it justs confirms whether baby is DS either way - as least then you know for sure and can make your decisions based on fact. Have you got any family or friends that might be able to help you financially with it?

    Another thing to mention is that I've found that the hospital are almost on pessimistic autopilot - I think they almost assume and tell you the worst case scenario so that if the worst happens you can't come back and say they weren't straight with you. I had a similar experience when I had a scare at 8 weeks and I'm now 18 weeks with a healthy baby. So whilst your midwife might have been a bit blunt around implying you should terminate, try not to read too much in to it.

    I'll keep my fingers crossed for you but try to stay positive - after everything you've been through it sounds like you're due a bit of good luck and happiness; It'll come round, it always does x

  • Hypothetically, if you where to go ahead with the other tests and it was confirmed your baby is downs would it impact your decision? If not and you would continue with the pregnancy regardless then you don't necessarily need to have the other tests. If you would continue then it's potentially unnecessary expense or unnecessary risk. I know it's easier said than done but if it wouldn't change anything it may be better to try and come to terms with the possibility of have a downs child. There's much less stigma attached to downs these days and so much more medical knowledge and skills now.

    If your not sure if you would continue then you need to carefully condider the tests, maybe speaking to to someone independent will help?

    Good luck wit your decision xx

  • Hi

    I had the same issue when I was pregnant came back with high risk. I paid for the private blood test as didn't want the amnio with risk of miscarriage and it was all fine: the waiting is h lol and yes you go through so much emotionally but if you can please get blood t st done as I'm sure you and baby are fine😀

  • I personally wouldn't terminate if my baby has Downs so I wouldn't have the invasive tests that risks miscarriage. If you are sure you would terminate if your baby has Downs then you need to get this tests and risk miscarriage or pay for the private £300 one. Good luck x

  • I went through the same thing with my first pregnancy, I was told I was high risk of having a DS child. I didn't do the second test (invasive one) as I was keeping my baby. I also had a still birth at 6 1/2 months a few years ago so regardless I wasn't losing this baby and I went on to have a healthy baby girl. I guess as others have said it all depends on how important the results are for you and if you would terminate if you found out baby had DS. All the best and try not to stress.

  • Having a child with learning difficulties is not easy, and isn't a decision that should be taken lightly.

    In my personal opinion I would say don't rush your decision and give your self time to get your head around it. Maybe meet with the hospital or GP and ask any questions you may have, see if there is any other things that can be done or considered? When I had the test done I was told it's not 100% and the results don't definitely mean the baby has DS.

    From what I can tell your better off without the baby dad, but maybe speak to him about it? He may be off some use? Family and friends is a good call too as it seems you need all the help you can get at the minute.

    Without stressing you out anymore you need to consider past pregnancies, and how hard it has been to conceive, your age (not been rude) and the difficulties having a DS baby has during and after pregnancy, but ultimately it's a decision only you can make.

    Remember, don't feel pressured into a decision, it's your body and your baby! I hope everything works out ok for you and you get the break you seem to deseve soon! Xxx

  • THANK YOU LADIES. I'm so comforted by your words and advice. I have decided not to go for any further tests. I'm a support worker for people with LD and I've loved and cared for them for 16yrs. If mine is DS will love him/her all the same.

    I hope you are all enjoying your journeys. Bless you all🙏🏾😘

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