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

[myfairlady]

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.

myfairlady, i'm really sorry to hear your news.
ARC (Antenatal Results and Choices) support women no matter what they decide to do, I don't know whether they could put you in touch with someone who's been in a similar situation. I know a woman who had a DS termination last year and now has a baby boy who's a few months old. I'm sure she didn't regret her decision, but obviously didn't find it easy. make sure you do what you want, not your husband no matter how much you love him. xxx

myfairlady, I am SO sorry you have such a major decision to make....remember though, whatever you do you will find support here.

I would just reiterate what bundle has said... try and make the decision that is YOURS and not swayed by what someone else wants..

I send lots of {{{hugs}}} and best wishes.

MFL

I'm sorry to hear this news, and especially that your dh is unable to help you in this decision. I guess he just can't cope with the news.

As I said before, look at your family, your heart and your logic, and make the decision for YOU. It's no good worrying 'what will peple think of me' in your decision, that will pass.

My heart goes with you. {{{{{{{{hugs}}}}}}}}}

Mfl all i can do is repeat what others have said and it seems so little, i wish there was more i could do! Whatever you decide to do you have to do it for you, no-one else, my heart goes out to you. Thinking of you.

Hi MFL I'm Clary's sister (am i allowed to say that MNers?) and as she said in her post our DD has DS (undiagnosed in utero - had a 1 in 2000 chance on nuchal fold). I won't try and influence what will be a very personal decision, and I couldn't begin to compete with the moving posts on here (but thanks to TC and others for bringing a tear to my eye and a wry smile to my face) but I would be happy to chat if you want to hear more about life with DS as we have experienced it, you can contact MN who will give you my email. Good luck with whatever you decide to do. xx

myfairlady, so sorry to hear your news - my heart really goes out to you.
I also recommend looking at Rosy's thread - I found it really useful while I was waiting for the results of my CVS.
I suppose that my situation was a bit different, in that I think that a decision about what to do after a diagnosis of Patau's is almost easier to make, since we were told that the baby would most likely die before birth, or if not soon after.
I have to admit that if the diagnosis was Downs, I would have probably taken the same option - though I guess it's difficult to know until you have actually been there. I think it's a really personal decision when it comes down to it. You are definitely doing the right thing getting all the information possible before you decide.
Take care of yourself - thinking of you.

I just wanted to add my voice to the 'thinking of you' messages .. I wish you strength [[[hugs]]]

myfairlady, i am sorry you have had a diagnosis of down syndrome and I am even more sorry that your husband has expressed he does not want a child with downs syndrome. If you dont mind me asking, do you know if the baby has any physical problems with its heart etc? Or are you not aware of this yet?

It is an incredibly hard decision for you to make. My sister had cystic fibrosis and I would not have chosen to have a child with CF. I dont know if I could have had a termination but I went through genetic counselling to make sure it was an impossibility before I had my children.

my daughter, however, has "undiagnosed" learning diabilities. She was perfect when she was born but hasnt developed at the normal pace. She is a very easy child, very beautiful and a joy to all our family. I find life as a family 'normal'. its society that doesnt treat us as 'normal' not ourselves. Early education is making a real difference to children with learning disabilities. A classmate of my daughters had downs syndrome and she was very high functioning and was actually ahead of her peers in some areas of development. She was gorgeous. Of course there is always a flip side and there are no guarentees. My daughter's learning problems are classed as moderate/severe and it can be hard work at times, mainly because she has disrupted sleep tbh! But i wouldnt be without her.

I am sorry to hear of your husbands views, but I am not suprised. A friend of mine tried for a baby for years with her husband and their child was born witrh a very rare chromosomal syndrome (only 2 in the world) her husband wouldnt have anything to do with their daughter and my friend is bringing her up alone. She is doing a great job of it, i can tell you!

The decision is yours though, an absolutly awful decision for you to make. Really look after yourself and make sure you are not rushed into anything before you are ready. get in touch with the downs syndrome organisation. Do they offer you any counselling at this time? If they do take it and come to a decision you feel happy with. I really feel for you my fair lady, it must be torture xx

Hi myfairlady, just seen this for the first time. So, you do have a little baby with DS in there, wow! Well you know where I am if you need me, email me through mumsnet and I'm there for you. I won't say anymore positive things right now as you might not want to hear them. you don't have to be scared though babes, whatever happens, okay. We're not given more than we can cope with, so whatever happens, whatever you decide you'll be ok. Please contact me if you feel like it.
Lots of love to you and your family.

Hi MFL. The only advice I can offer is to go with your heart and gut instinct. My eldest son is severely autistic- and I would never have been able to understand what that meant prior to it happening- or been able to weigh up pros and cons. He has changed our lives immeasurably- and changed the way I think about everything.

If you feel you just want to keep your baby you don't need reasons to justify it, and likewise if you feel you can't go through with it. Gut instincts are usually the right ones for decisions this emotional.

Please don't worry about your husband. 99% of the dads I know have started out with problems with having a disabled child but they've all got there in the end.

maybe i was a bit too honest/flippant with my husband comment my husband has been brilliant but I do think it 'can be' harder for men to accept. But it is hard for the mother to accept too. Feel i am digging a deeper hole here

I'm so sorry to hear your news, my heart goes out to you.

I noticed that you've been put in touch with people who have DS children but would like to speak to someone who perhaps decided not to continue with her pregnancy. The organisation 'Antenatal Results and Choices' may be able to help. The address is \link{http://arc-uk.org\this. This organisation provides support to people undergoing antenatal testing and has a weekday helpline.

polkadots site

I don't have any personal experience of this, but have been following your story and couldn't not post.

This is a horrible decision to make, and either way it will be a rocky road. But you have lots of friends and family around you and lots of support on MN.

Thinking of you.

Myfairlady, I've just seen your post today and wanted to add my sincere sympathies (if that is the right word) along with everyone else. I particularly understand your need to hear from someone who terminated a DS pregnancy as I know from my little experience, that there is loads of positive support to be had from people who have gone ahead and had a DS child, but not so easy to hear the other point of view. I do hope you are able to come to a decision, either way, relatively painlessly and that dh will participate with any counselling you may undertake. His support for you is so important right now. Are you able to find out any more about the health of the baby? As I am sure you are aware, DS can come in so many varying degrees, both mentally and physically. For my part, the thought of having a severely physically disabled child, one that might not live to adulthood, would make the thought of parenting them far more daunting than just DS alone.
I shall pray for you tonight, if I may.

Myfairlady - thinking of you as you make this difficult decision (((hugs)))

Message withdrawn

Thinking of you MFL. Best Wishes

As suspected you have all been very helpful. I am taking all the leads you are giving me, and have read with great interest Rosy's thread. Now that I am coming to terms with the fact that this is my decision and mine alone, I have taken comfort in that.

I have given myself a two week deadline and even though I am feeling that I am going more and more in one direction, I keep being swayed. I always have been very influenced by what others say, not because I am afraid of what others will think of me, but because others seem to have such strong and well formed opinions, sometimes stronger than mine.

My strength has been that I have always acted on gut instinct all my life and I have rarely been wrong, even if on the surface at the time it seemed the wrong thing to do. Sometimes it wouldn't be obvious that I had made the right decision until much later, but things have always worked out in the end and I have dealt with the situation.

However all through my life I have fallen into things and then taken the opportunity and carried the situation to new heights...this is different; I cannot go back or change tack once the deed has been done.

I find I am rising to the challenge, and although it sounds rather callous and cold, it is a hell of a challenge and I won't let it defeat me.

My father has given me the best advice of all, some of which I see echoed in your messages and in the messages in Rosy?s thread also.

Which ever decision I make, it will hurt, there is no easy option, and after the event makes sure you focus on why you made the decision, focus on the positives that helped the delicate balance between the two tip towards that one. I know I will never feel 100% sure about what I end up doing, and there will always be guilt and regret.

I am helped enormously by everyone?s experiences, suggestions and the love you send and I hope that one day I will be able to lend the same support to someone in a similar situation.

Just want to echo what has already been said by so many. Wishing you all the strength and courage you need to make your decision.

myfairlady, you are so right to pinpoint the hope that living through all of this will enable you to someday help someone else facing a similar dilemma. Since my son Tom was stillborn at 21 weeks I try so hard to help others to whom this has happened, that way I try and salvage some "good" from what was a harrowing situation.
Whichever way you turn, you sound like a tremendously wise and savvy person, I wish you all the luck in the world.

this website may be useful.
As far as I know she is happy with the decision, and has recently had an unaffected baby; although she decided to have no screening tests in the subsequent pregnancy.
It must be even harder for you because of the difficulty you had in conceiving, as you don't know whether you will have another chance to be a mother. I know that would have made it agonising for me and was the reason I decided against any screening tests (I also needed treatment to conceive). I just couldn't face the possibility of making those decisions; it is a very brave thing to do.

I wish you well whatever you decide. It must be heartbreaking.

MFL- wonderful post. Trust your gut instinct whatever it is - as it will get you through and it will be the right decision for you. Your experience can be similar to others but it can only ever be yours which is why you have to trust that inner voice. I'm a great believer in gut instinct. Be good to yourself as well.

SOrry I left a stray sentence in my post - I wrote much more but then changed my mind about it and you had already posted. Sounds like you ahve a lot of support, even though it is your decision I'm sure that will help it feel less lonely.

I have a beautiful 3 year old little girl who is absolutely adorable. She has just been diagnosed (about 5 weeks ago) with a genetic disorder called Sotos Syndrome. Reading about it, I felt very positive. I threw myself into finding everything I could about the syndrome and after going on a convention (two weeks after diagnosis), I felt very negative BUT I can honestly say I would not be without her. Yes, sometimes she is hard work, but then aren't all toddlers. She is sociable, outgoing, a great personality but I can also appreciate (if that is the right word) her "bad" points.

I met up with a lady I met at the convention - she came to my house last Friday - and her daughter (same syndrome) is just adorable. Reading out the syndrome and then meeting people with the same syndrome, I had mixed feelings but I know for a fact, that if I knew now (as opposed to what I knew a few weeks ago), there is no way I would not be without her.

If people cannot accept her for who and what she is, then that is their loss.

Some people can be a bit short-sighted in what they see - they see the syndrome - whatever syndrome that might be - rather than the child (and I felt the same after meeting people at the convention with the syndrome), but I know that I would not change Sasha for the world. Even if during my pregnancy I had found out about the syndrome (and gone through the highs and lows of the what is or could be involved), knowing know I would not be without her. For me, I focused on the "negative" points of the syndrome but at the end of the day I know Sasha and how far she has come on in the last few days/weeks/months and I know she is loved/wanted/adored and that is all any child needs in life.

I haven't been through what you are going through but I feel it would be good for you to meet other children with down's syndrome and see how fulfilled their life is. I know mine is.