Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
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:
pamina3 · 10/11/2004 15:02

This reply has been deleted

Message withdrawn at poster's request.

Discomonkfish · 10/11/2004 18:09

MFL I have been watching this thread and am sure that whatever decision you come to will be the right one. My Uncle and his partner at the time had a baby girl with DS about 15 years ago, they didn't know that she was DS until she was born and we never got to meet her as they decided to have her adopted. I've never spoken to my Uncle about it as we were quite little at the time and we now live miles away. There was a beautiful little DS girl on GMTV this morning and her little sister was raising money for her hospital by recording an opera CD as she had heart problems. She was adorable and her sister had me in tears because she loved her so much. I have no idea what is involved in the day to day caring of a child with DS and understand that sometimes its more what you think other people will think. I would just say take your time and whatever decision you make will be the right one, thinking of you x

cab · 10/11/2004 18:55

For what it's worth MFL I think you're doing the right thing in taking time to educate yourself as much as possible before making your decision. I have just had my cvs results back and they're clear but don't think any of us really know what we would do with your results unless we have actually been in your situation - and every situation is different. Rosy's thread had me in tears, not least because I have a friend by that name who is absolutely devoted to her brother who has ds (married to a girl who also has ds). Her brother has given a billion times more love, affection and laughter to his parents than their son with no ds - who is also a lovely guy. But on the downside Rosy doesn't hide the fact that caring for him has cost her parents dear in terms of their own health and finances. Reading between the lines there wasn't a lot of time for Rosie in the equation. Needless to say she wouldn't be without him.
Best of luck making your decision, but as others have said, ensure it is your decision and not your husband's or it could affect your relationship long term.
Hugs xxx

Dingle · 10/11/2004 19:07

My heart goes out to you MFL. I class myself as lucky,firstly to not have known dd had DS until she was born and secondly to have her in our lives. It must be a nightmare of emotion you are experiencing.
I don't feel I can really tell you more about my dd and our life with her unless that's what you decide you want to hear. I would fear that I was trying to sway your decision and that decision is what is right for you, nobody else.At the end of the day it is your life that would be changed by this baby, with or without DS, it is what you are feeling in your hearts rather than worrying about what others will think of you and your family.
Please remember that I am at the end the phone/computer if you ever want any information.
Like TC, I would be more than happy to help and meeting you was at all realistic re;locations, I would help in any way possible.
If you want to do any reading I would recommend "Just Kids" book, I know some of the initial reading about DS seemed very off-putting and full of medical terms that may never even be relevant.
You are in my heart & thoughts, look after yourself and I hope you can come to the right choice in your heart as well as in your mind.
{{{hugs}}}}Dingle.

willow2 · 10/11/2004 19:15

Oh lord, I have just caught up with this thread and I'm crying for you. FWIW I think your posts, and the responses here, have been incredibly thought provoking and moving - not that that will make making a decision any easier. I feel for you desperately, particularly as you seem so alone on this journey. I hope that, whatever decision you end up making, you and your dh can end up making it together. A massive cyber hug. xx

princesspeahead · 10/11/2004 19:36

Oh MFL, I'm so sorry you have to make this decision. I agree absolutely with Jimjams, whatever your gut instinct is will be the right decision for you. Thinking of you.

Tinker · 10/11/2004 20:08

mfl - am so sorry you are in this position, having to make such a hard decision. Am thinking of you.

motherinferior · 10/11/2004 20:18

MFL: I have read your thread several times over the past couple of days. Hugs.

Christie · 10/11/2004 22:20

This reply has been deleted

Message withdrawn at poster's request.

CountessDracula · 10/11/2004 22:31

mfl, have no real experience of this but I must add that every DS child I have met has been a joy to be with.

Will be thinking of you at this difficult time - whatever the outcome and whatever you decide, at least you will feel that you have investigated the options fully and will make an informed decision.

Best of luck xx

Blu · 11/11/2004 10:55

MyFairlady, I really do feel for you, and send you my love.
I can't imagine how you must be feeling - I only had a glimpse of this situation. Multiple soft markers at the 20 week scan, and a confirmed 'club foot', talk of trisomy this and trisomy that. My DP was like yours - he felt adamant, no DS baby. But I felt differently - cerebrally I was open about the possibility of a termination, viscerally, the bump was my baby.
My DP did start a journey of research. I have worked with DS adults and knew that the old stereotypes are out of date, and that DS people have jobs, read, are educated and can live independently....DP found all this a revelation.
I did have amnio - because they were talking about some of the very severe non-viable trisomies, and in the end I was never tested to make the choices you have. As it turned out, my darling darling has a far more complicated congenital abnormality than talipes/club foot, and his various surgeries have wrenched our hearts in two, but we have got through it, and we couldn't be happier.

I'm not trying to 'say' anything, other than I wish you the greatest of strength as you make your choices. It was hard for DP and I to tiptoe around the different feelings we both had - we wanted to support each other, we were both in anguish, and I guess we were lucky that in the end we didn't have to confront our different feelings.

Hugs.

Original poster
myfairlady · 11/11/2004 11:01

I am off to see someone at ARC today on my bike, lovely day for it. I am so confused I have to say, one minute I am sure I am going to have a termination and the next I am thinking that this is a sign and I mustn?t mess with it. The DH situation hasn't really got any better. I love him to absolute bits and he has made my life complete on so many levels, and to bring an unknown entity into it could change things for ever and not necessarily for the better. He has said some very rational things which I agree with but has also been cold and callous and selfish in moments of his own distress, it's his way of dealing with it. He is the most generous person I know but also the most selfish, all in one fell swoop, but he is my man and we are meant to be together forever on this journey that is life. This is tough and I'm not there yet. I am visiting a downs child on Sunday and I?m doing everything I can to help myself, and I'm ok, but this is real, very very real. I just wanted to say though that not at any point have I worried about what others will think of me, I am definitely making this decision for me alone. Thank you again everybody. Myfairlady

OP posts:
Twiglett · 11/11/2004 11:08

[hugs] .. I keep coming back here and sending you strength vibes

You will be able to make the right decision for you and your family, whatever that decision may be

Thomcat · 11/11/2004 11:10

It's so difficult to be there for you and try not to come across as trying to sway you, I don't want to do that, we all know and respect that this is your, very important, decision and nothing to do with anyone else but you and you DH. I'll try and be careful. I just wanted to say that if we'd known I feel that my DP wouldn't have wanted our baby, I think he would have been terified and not understood, so I understand where you husband is coming from, but ......well let's just say I'm SO glad we didn't know before hand. You're being amazing and handling this in a very clear and calm way which is wonderful, my thoughts are with you, in fact I can't stop thinking about you!

puddle · 11/11/2004 11:10

MFl I haven't anything useful to add to the wise words on here already but wanted to send love and strength to you for the next two weeks. My best friend went through this four years ago and opted for a termination in the end. Arc supported her tremendously.

Blackduck · 11/11/2004 11:13

MFL - good luck whatever you decide. I had an amnio with ds and would have terminated....strangely it is now dp who won't contemplate another child because he knows I'd do the same thing again......

bundle · 11/11/2004 11:14

MFL, I met some of the people who run ARC a few years back at press event, and they were lovely, thoughtful people. hope they can support you in the way you need, xxxxxx
ps have this lovely vision of you cycling through london's parks

Marina · 11/11/2004 11:18

It's a glorious day for the cycling. Best of luck with your ARC appointment, see how many people are thinking of you myfairlady.

Pidge · 11/11/2004 11:31

Also wanted to say that I was thinking of you - rather than just silently reading this thread. Whatever you decide will be right for you.

willow2 · 11/11/2004 11:42

Just checking to see how you are. Thinking about you loads.

On a slight tangent, can I just say that if I had to pick a recent thread that explained what Mumsnet is all about it would be this one. Forget all the petty bickering; this is what makes this site so very special.

I will leave now before I go all Darius on you all xx

Frieda · 11/11/2004 11:42

Me, too, myfairlady. Thinking of you and sending out supportive vibes

Gobbledigook · 11/11/2004 11:46

MFL - I've no experience of such a dilemma so couldn't possibly add any further wisdom to that already on this thread. Though just wanted you to know that I'm thinking of you and sending you 'virtual support'.

Good luck with whatever you decide.
x

marthamoo · 11/11/2004 12:03

MFL - you sound like a very special person to me. I hope you can find your way through this - whatever you decide to do. Words seem inadequate - but I am thinking of you.

Hausfrau · 11/11/2004 13:04

This reply has been deleted

Message withdrawn at poster's request.

LIZS · 11/11/2004 13:13

mfl, thinking of you. Facing up to making such a decision is incredibly brave. It must be especially hard when the one person who you need to share the decision with has such a different approach. Wishing you all the best.