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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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:
heartinthecountry · 11/11/2004 14:09

Myfairlady - I've only just caught this post. There is some fantastic support and advice already here and I cannot offer much.

But I just wanted to say this - when I was pg my dh and I discussed what we would do if our child had DS. He was adamant he would want us to terminate. As it happens, we have a very beautiful gorgeous daughter who has a different syndrome with pretty severe learning difficulties. If I am honest my dh still struggles a bit with her condition but there is absolutely no question at all that he loves her 100%. He doesn't want to get involved in the 'special needs world' and I do find that I end up 'dealing' with a lot of it. But our dd really is the apple of his eye. He adores her. Of course I do not know your dh but as others have said most men do get there, even the most unlikely ones.

The other thing I wanted to say was this - I think that if I were in your position I would be reading this thread and thinking that TC, Dingle, Sinclair, Eidsvold, Jimjams, Fio2 etc must be amazing people (which they are - but not because they have children with SN ) and that although they were able to accept their children and live with whatever that entails, I WOULD NOT BE ABLE TO DO IT. And all I can say is this - I NEVER thought I would cope with a child with SN. But I can, and not only do I cope - I enjoy her enormously. I won't pretend it doesn't have its ups and downs but I think the overriding thing for most parents of children with SN is that they love their children just as much, and in just the same way, as any other parent. I didn't expect that. I thought I wouldn't be able to love a disabled child. But the fact is I don't think I could possibly love her more.

I don't want to try and influence you to do something that is not in your heart. I really feel for you having to make this decision. I do feel so glad that we didn't know about dd and never had to do this. But please also do not underestimate yourself and your dh and what you are both capable of dealing with.

thinking of you xx

rubyone · 11/11/2004 17:03

Dear MFL,
It is so hard to be given the 'choice' to make these life and death decisions - my sympathies go out to you.
I did think of one point that may or may not help with your very difficult decision, with regard to how incredibly long you tried for a baby and having to go through IVF as well. It might be useful (if painful, I know) to ask yourself whether it would be worse to have a DS baby or to never have a baby at all - in case you don't get pregnant again. Or put it another way, to experience being a mother or not to experience being a mother.

Hope this helps a little. Sending good vibes to you.

onlyjoking9329 · 11/11/2004 19:00

i have been thinking of you and your difficult decision, we decided we wanted a child and for me and DH it took a long time, we had an ectopic and a miscarige but eventually we had three children all of them much awaited loved and Autistic, now when we were dreaming about our babies we didn't dream about having a child with a disability let alone three, there are no tests to say your baby has autism, and for that i am sooo glad, cos that would have put me in the same position you are in, i ain't saying life is always easy but you know i am sure i get so much more from my kids cos every step is celebrated massively, because we learn to not take things for granted and we get to appreciate things that others may miss, i wouldn't change my kids. take care thinking of you lots, why don't you come over to the special needs board

tamum · 11/11/2004 19:09

I just wanted to add my support. I have been worrying about saying this, because I would hate it to sound like I was trying to sway you, but I remember seeing a program about DS when I was on maternity leave. There was a mother on there who had a baby with DS and felt she simply couldn't cope (she hadn't known in advance). They arranged for the baby to be fostered with the possibility of long-term or adoption, and she went away to discuss things with her dh (who had the same view as yours) and think for herself. She decided within a day or two that she wanted to keep the baby, but said that the fostering had been very important to her, as it turned having her baby into a positive decision, not something she felt had been foisted on her (sorry, I know that sounds offensive, I'm just trying to report what she said). I only mention that because you said that "I can not go back or change tack once the deed has been done"; I just wanted to mention another scenario where you still retain an element of choice up until the last possible minute.

I really feel for you. This is a fantastic thread, and you know that people will support your decision whatever it is.

misdee · 11/11/2004 19:16

have you seen this weeks take a break? moving story in there, woman making the same choices as you are. might be worth a read.

Thomcat · 11/11/2004 21:39

There are such wonderful, supportive, understanding, heartfelt posts on this thread, it really is wonderful, mumsnet at it's best. Heartinthecountry, I was particulatly moved by the sentiment in your post and couldn't agree more.

Thomcat · 11/11/2004 21:45

Sorry i posted before I had finished as I thought I heard Lottie upstairs, I put her in my bed to fall asleep tonight so I can get in for a sniggle with he after my long soak in the bath as her daddy is out tonight!

Anyway............. MFL, hope you got on at Arc today. i spoke to someone at the Down's Syndrome Association today and she said they are there for you if you want to talk. I didn't tell her much, was talking to her about somethign else and just mentioned you and she said to say they're there for you, okay. hope you're ok. Thinking about you loads and wishing you strength.

beccaboo · 11/11/2004 22:22

Myfairlady, I just wanted to let you know that, like everyone else here, I'm thinking of you. You have an incredibly hard decision to make. I have no idea what I would do in your shoes, but this thread has really made me think.

Maybe to your dh it still seems theoretical - I know it took a long time for my dh to realise we were going to have a real baby, while for me it was real from the moment I found out i was pg. Whatever you decide, there'll be lots of support for you here.

welshmum · 12/11/2004 11:19

Myfairlady. You come across as such an astonishingly together woman. I hope that somewhere there is space for you to cry and that you don't feel you have to keep it together for everyone else's sake. I wish you wisdom and quietness with your decision making and peace in your heart when it is made. All the very, very best.

Socci · 12/11/2004 16:14

Message withdrawn

bonym · 12/11/2004 18:25

Myfairlady - have just found this thread - can't add anything helpful I'm afraid, but am thinking of you and hope you come to whatever decision is right for you. You are very brave.

Twiglett · 12/11/2004 18:31

I hope your visit to ARC gave you some support

still thinking of you MFL

Tessiebear · 12/11/2004 18:40

Have never posted on this thread before but have been following it .... just wanted to say that i have been thinking about you and your heatbreaking decision - you will find the strength to do what is right for you ... good luck

Christie · 12/11/2004 19:08

This reply has been deleted

Message withdrawn at poster's request.

Original poster
myfairlady · 13/11/2004 18:21

hi, just wanted to say to welshmum, (and to all of course) that I was finding it very odd that I was appearing to be, no, not appearing, was being really strong about this, but nevertheless so so sad in my heart, I was just being extremely philosophical...however...

?I made my decision on Thursday night and I have cried a lot since then. I am going to have a termination next week and I have started to grieve. I have also started to love my baby again and care for him/her as well as I can in these last days of his/her life. I will say goodbye in my own way that I feel will make me be able to deal with this enormous loss, especially as there is no guarantee that I will ever be pregnant again.

This last factor is not a good enough reason to keep this baby, for I know that adoption is a wonderful and extremely giving and generous option and there are many children who need a happy home. This is an option I feel very positive about, and so does my dh, which he wasn?t before. There?s your silver lining, although it really isn?t possible to have a silver lining around this dark cloud, but it is just peeping it?s little face around the corner to help us get through this. Dh is still pretty removed, but very much there for me and we are still able to have fun moments which seems a miracle to me but very very much needed.

Bundle?I did have a wonderful moment in one of the London parks on my cycle ride back from Arc, you were so right. I have a special place which now will for ever more be even more special as I feel I showed my baby it properly for the first time and talked about it to him/her.

I will find out its sex on Monday and name it and start preparing a scrap book and memorial/burial services. I feel very blessed as we have a reverend in the family who will come and bless the child. My mother is going to be with me and my dh as much as he can bare, I have to allow him to grieve and deal with this in his own way.

I know I sound very together and composed but believe me, this has been the hardest ting I have ever had to go through and it isn?t over, in fact it probably hasn?t even started. I do not know emotionally what is round the corner. I have been lucky that I am not working at the moment and have been able to devote my entire being to this terrible life changing decision, and that is how I have been able to cope, through shear concentration and then complete and utter distraction, switching between the two. I was given the time to listen to my body and mind...and soul.

The worst thing at the moment is having to come to terms again, especially as I thought those days were over, with the fact that there are pregnant women around me every where, and toddlers being unbelievably cute and babies being born on tv programs and people being insensitive around you because they don?t know. Here it comes and it?s horrible, but unavoidable, so that?s why I have no choice but to cope and then cry when I get home.

I know I have gone on quite a bit now, and I also know that I am not alone, I just hope that someday one of you hardcore mumsnetters will be able to pass this thread onto some one else who might feel supported by what everyone has said, as well as being supported by you guys in their hour of need. I will leave this thread now and stop posting. You?ve been incredible, I?m so glad I found you.

Lots of love and I wish you courage in everything you do ? myfairlady

OP posts:
zebra · 13/11/2004 18:25

, mfl.

littleweed · 13/11/2004 18:25

You sound an amazing woman. take good care of yourself. LW x

NQWWW · 13/11/2004 18:33

MFL - like Tessibear, I haven't posted before but have been following this and am thinking of you. I have my nuchal on 6 Dec and don't know what I'd do in your shoes. My sister had 2 terminations in a row, one for Edwards and the second for a very rare disorder which doesn't even have a name. But then, she has no fertility problems and already had 2 kids, and has gone on to have another healthy dd.

I do hope you don't mind me asking, but if you do terminate this pregnancy, will you go through IVF again?

cab · 13/11/2004 18:51

Look after yourself MFL - hugs xxx Thankyou for letting us know.

Twiglett · 13/11/2004 18:55

I am glad you have come to a decision that is right for you

I just wanted to let you know that I, and all other MNers, are here for you through the next few days and beyond

Please don't make this your last post but come back in good times and in bad .. because that is why we are all here

[[[[[hugs]]]]]

funkydiva · 13/11/2004 18:57

MFL - I think you sound an amazing and very brave woman, I don't know what else to say, but I think I would have done the same in your situation, if it is ok to say that.
I send you lots of love, xx

blueteddy · 13/11/2004 18:58

Take care. We are all thinking about you.
It must have been a very hard desicion for you to make.

Tallbird · 13/11/2004 19:20

Myfairlady - have been thinking a lot about you. You are incredibly brave. Wish you all the strength you need to get through this.
Do look after yourself.

bakedpotato · 13/11/2004 19:29

MFL, just wanted to add my support.
with love

Jimjams · 13/11/2004 19:35

MFL- If you can find a support group for people who have been in the same position it might be worth making contact. (Internet ones are good- as you can dip in and out, build strong friendshios but still remain anonymous iyswim). Over the next few months you may well find it incredibly helpful to talk to people who have been through it as well. People who have shared the same experience will be able to understand in a way that other just can't.

Look after yourself.