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Original poster

a 1 in 3 risk of Down Syndrome at 39 years old

193 replies

myfairlady · 02/11/2004 21:28

I had the Nuchal fold test today and to my great shock was given a 1 in 3 risk of having a Downs Syndrome baby. We now have some hard decisions to make. Do we have the amnio and the CVS, would we terminate if results were positive? I would very much like to hear from other people's experiences of such a high screening result. I know it's nothing conclusive but 1 in 3 is terribly high.

OP posts:
Original poster
myfairlady · 04/11/2004 16:29

Hi Easy, I think because there are other chromasomal abnormailties also at play here, which would have very serious consequences for the child, I had to have the test. The Dr. basically said, this ain't right. We have trusted our clinic and our doctors and counselors, you have to trust someone. And I am thinking very hard about all options. And I know I will be suppported what ever the decision is. But ever optimistic...I might not have to make any difficult decisions. thanks for your message x

OP posts:
DelGirl · 04/11/2004 16:33

Have also read your post Thomcat and it's brought tears to my eyes. I have to say, though I've never been that phased about DS as I've been involved with lots of adults in the past with DS and I also used to be a home help for a 50 year old man with DS, when it comes to a decision like this it turns up all sort of emotions and I think reading of peoples experiences on here gave me the strength to not have any testing whatsoever as I know, whatever the outcome I will love this child no matter what.

Myfairlady, the above is my own feelings towards my very much wanted baby, 4 years also having treatment but this in no way should be compared to how you feel or how your DH feels. Like Thomcat, whatever you decide is best for you, that decision will be totally respected on here and you will receive heaps of support whatever you decide. ((hugs))

Easy · 04/11/2004 16:33

I do understand MFL.

My disability is totally unidentified, and we had no idea if it would be hereditary or not. The thought of something like Downs combined with my physical differences would just be too much for us to contemplate.

Hence what our decision would have been.

We didn't have to make it, Thank God.

onlyjoking9329 · 04/11/2004 19:40

i have read this thread and Thomcat says it all for me, what a beautiful post from a wonderful and inspiring mum. some people may view additional needs children as a burden, thomcat lives it and she knows its a blessing.

blossomhill · 04/11/2004 21:11

Thomcat - I have read your posts on here and yes I am emotional. You are such a lovely mum and person. I haven't even met you yet. You have really helped me over the past week that we have been chatting feel so much more positive about my dd - so thank you for that I know that the lady last Friday said that Lottie had a real aura about her and I feel that you do too!
I know for a fact Lottie must be so proud to have you as a mum as you are to have Lottie.
Lots of love Blossomhillxxx

blossomhill · 04/11/2004 21:12

That's the word I meant too OJ. Thomcat you are inspirational xxx

Dingle · 04/11/2004 21:38

I can't say anymore than what has already been said, but try to do what is right for YOU myfairlady.
I am the mum of a wonderful little girl,who has just had her 3rd birthday, she has DS. She is healthy, happy and truly an inspiration to me. I would be lying if I didn't admit that emotions were all over the place when she was born, but I "knew" instantly when she was delivered onto my tummy. My love for her is no different to that of her older brother and I look at her now and she amazes me at how georgeous she is. Her "little" personality (well far from little actually,I'm sure TC will know what I mean!)just oozes from her, friends come round when they need cheering up, she is one in a million and despite the "hard work" I couldn't imagine my life without her. The way I see it is what child isn't hard work.
Having a child with DS certainly isn't easy, I am sure that we will have many ups & downs and plenty of fights ahead of us to ensure that she reaches her potential....but so what...she is worth every bit of that and more.
Good luck, whatever your fate, whatever your choice. Hugs Dingle.
Sorry BTW,,,,waffle over.

onlyjoking9329 · 05/11/2004 18:09

myfairlady, how are things going for you? you have been on my mind

Lonelymum · 08/11/2004 12:19

Any news yet Myfairlady? I have been thinking of you.

Thomcat · 08/11/2004 13:28

Ditto that Lonleymum.

Original poster
myfairlady · 10/11/2004 09:38

Hello lovely mums. myfairlady here. I have a DS baby in my tummy. I found out on Monday afternoon. I spent all of yesterday in bed watching every watchable daytime telly program there was from friends at 7.30 in the morning through to Richard and Judy at 5. I had to zone out and be a zombie. I am now ready to start making the hardest decision I have ever had to make in my life.

I have some numbers of people to talk to about the pros and cons of having a DS baby, I have friends and parents who are incredibly wise and supportive. I have a husband who will stand by me what ever my decision is, and that?s just it. I will be making this decision on my own.
He?s made his decision and will not be persuaded otherwise, he does not want a DS child and will not do the research into what it will mean to have one with me. I am alone.

I have been put in touch with lots of carers and parents of DS children, but I have yet to find someone who has been in my situation and then decided to have a termination. I really need to have contact with someone like that. Does anyone know anyone? I really need to know about both sides of the coin, the pros and cons, and possibly consequences of both decisions.

Can you help? Thank you.

OP posts:
Original poster
myfairlady · 10/11/2004 09:39

p.s thank you for thinking of me

OP posts:
spacemonkey · 10/11/2004 09:41

Wow MFL, my heart goes out to you. No experience of this whatsoever but I've been following your thread and hope that you get all the support you need to help you make the decision. XXX

beachyhead · 10/11/2004 09:53

My feelings really go out to you for this decision making time. I hope some other MN who have been through this can help you better than I can but I just wanted to let you know I'm thinking of you.

Azure · 10/11/2004 09:54

Just wanted to say that I am thinking of you at this very difficult time.

bakedpotato · 10/11/2004 09:55

MFL, i've been following this thread and thinking of you constantly over the last week or so. have no useful experience to share, but hope you get the information you need.

GRMUM · 10/11/2004 09:56

Thinking of you at this difficult time MFL. Glad that you have support in real life and I know you'll get plenty of support here whatever you decide.(((hugs)))

Hulababy · 10/11/2004 10:01

(((hugs))) MFL. Thinking of you. Mumsnet will be here to support you, whatever your decision.

maddiemo · 10/11/2004 10:06

I really feel for you MFL.
I have no experience of DS. My husband was also convinced that if we were to discover a DS child in pregancy we would terninate. We went on to have four boys one of whom has autism. My husband has changed so much, he now sits on many special needs groups and has a very different outlook on life. I suppose it was easier because he had two years to know our son before we realised he was not developing as he should.

I have also had a termination,a long time ago and not for medical reasons. My heart will always regret it but at the time it was the right decision for me.

My friend had a medical termination at over 20 weeks. Her husband and family did not want her to have the baby. Her biggest regret was that she felt very rushed into the decision.

I am not a very tactful person and hope I have not said anything that will add to your distress.

Whatever decision you make, take the time you need. I am thinking of you very much.

eidsvold · 10/11/2004 10:08

It would be worth contacting the Down syndrome Association - website
here along with contact details etc.

... they have so much information to share on all sorts of things and both sides of the coin so to speak.

There is another parent organisation that I was a part of that also provide support for parents both post and antentally.

website:

here this also has a bit of our story - 'message from oz' and if you email the organisation the woman who set it up is brilliant and would be more than happy to talk with you and refer you to others.

Hope that helps. It really is not an easy decision to make - especially on your own.

Marina · 10/11/2004 10:10

MFL, so sorry you have this decision to make.
I don't think she posts on Mumsnet these days, but a couple of years ago a wonderful, brave Mumsnetter called Rosy shared with us her experience of termination after a DS diagnosis.
(Her honesty helped me hugely when I faced the prospect of an induced stillbirth after my own baby died in the womb at 21 weeks a year later, by the way).
Rosy went on to have another baby.
Here is the link to her thread. I really hope it helps you a little. Focus on the supportive messages there, (lots of them), especially Roglyn's account of her experience too.
Whatever you decide, you will find support and friendship here. Rosy's Story
If you want to do an archive search for poster name Rosy, you will see that she often updated us all on how she and her family fared after the termination, and gave loads of kind advice to people facing similar decisions about antenatal testing, or pregnancy after a loss.

yoyo · 10/11/2004 10:18

Just to say that I am thinking of you at this most difficult time.

funkydiva · 10/11/2004 10:25

I just wanted to say I am thinking of you, I have no experience of this, but my heart goes out to you xx

teabelly · 10/11/2004 10:25

MFL I have been watching this thread and praying for you.

My sister has a beautiful D/S daughter, just turned 15. She has been a source of wonder and amazement to her as well as a great frustration at times too. I love my niece to bits and wouldn't be without her, but my sister and I have very different personalities and temperaments. I am expecting my second child, and have my nuchal scan on friday. Both dh and I feel that if D/S is suspected and later confirmed then we would terminate the pregnancy. We know that for our own family it would be the right thing to do.

As so many others have said you have to do what you feel is best for you, and I'm sure deep down in your heart you know what that is. If that decision is to have your child then as maddiemo says I'm sure your dh will come around in the end. I am very lucky in that both dh and I agree, I feel so bad for you feeling you have to make this decision by your self. Take your time, a few more weeks in the whole scheme of things won't make that much difference and will give you time to collate your feelings properly.

Sorry to ramble on, but when my niece was little she used to go to a mum's and babes group for parents/children with D/S - would it maybe help you to go along to one of these? I used to go with my sister from time to time, and most mums there will be completely honest about the pros and cons of having a child with D/S.

clary · 10/11/2004 10:26

Oh myfairlady I had been thinking of you I am so sorry that you have to make this decision.
The fact that your baby is so long-awaited will only make it harder, I guess.
Yes, I was goign to say as Marina says, look at Rosy's thread, it's very moving.
I think there are others on MN who have terminated after a DS diagnosis, hopefully they will see this and post.
My niece has DS and is the most wonderful little cherub. My sister (her mum) posts on MN so I will draw her attention to this thread.
You will have the full support of MN-ers whatever you decide. We are thinking of you. {{{{{hgs}}}}}