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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:
yoyo · 03/11/2004 11:17

Thomcat - what a lovely person you sound.

Myfairlady - you sound incredibly calm and sensible. Hope your meeting goes some way to answering your questions. Thinking of you.

Thomcat · 03/11/2004 11:24

Soory meant to post this for you too, it's the DSA website.

If you go to fundraising, that's me in the blue jumpsuit and if click on my story of the skydive there's a pic of Lottie. That's not the reason I posted the site, it's actually the website for new parents of a child with Down's syndrome but thought it would be intertesting for you to see a picture of Lottie as well.

pupuce · 03/11/2004 11:31

Hiiii.... I'd be too scared to jump! Well done you.... Lottie is sooo cute

fufmum · 03/11/2004 11:41

Fantastic- Thomcat you are a real inspiration, i have sat reading all this thread and your thread about Lottie and the tears have been flowing down my cheeks. Not tears of sympathy as i can see you don't need/want that. But tears of admiration and joy for a mother who gets so much enjoymaent out of her precious little girl. I am about to become a mum for the first time in January and i hope i get as much love and enjoyment with my DS as you so obviously do with Lottie. Truly amazing and you have made me see DS in a totally different light, thankyou!
Myfairlady goodluck i hope evrything turns out the way you want it, my fingers will be crossed.

Thomcat · 03/11/2004 11:53

That's lovley fufmum, I'm so, so pleased and very touched.
Congratulations on your pregnancy and wishing you a happy healthy son or daughter. Thank you for your post, it meant a lot, as did everyones comments.

Myfairlady you've found a gret support group in mumsnet, no matter what it is you are going threough there will be someone who can and will help.

TC x

motherinferior · 03/11/2004 12:30

Tallgirl, I am so sorry.
TC, I just read your post. I'm proud to know you.

Thomcat · 03/11/2004 18:02

How did it go today myfairlady? Are you okay?

maomao · 03/11/2004 18:10

Tallbird, I'm so sorry to hear of your news. Hugs to you.

Myfairlady, I hope that you make the choices that are right for you. You'll find plenty of support for your decisions and plenty of knowledgeable people here on MN.

Thomcat, your post has brought tears to my eyes --- you are such a lovely person! I hope I get to meet you someday....

Thomcat · 03/11/2004 20:41

Tallbird, I was so busy thin king about myfairlady that I missed you post and have just had a chance to sit down and go back and read it. I can only echo what others have said, my heartfelt sympathies darling, I really am so sorry. love to you and your f xamily, TC

Original poster
myfairlady · 04/11/2004 11:23

Hi everyone, I was out of the loop yesterday, after seeing the genetic counselor with a list of questions as long as my arm (helped by some of your knowledge, thank you) My hubby and I didn't beat around the bush and elected for a CVS there and then. After that I spent the whole afternoon in bed watching both Stuart Little films, very lovely and calming.

I am feeling fine but nothing else is on my mind than the different decisions that will need to be made when the results come through, which can vary. I feel hopeful and optimistic that all will be well because from my and a lot of other peoples? experiences, I have discovered that doctors can be wrong.

I have great support from my friends and parents and in particular my darling hubby.

I want to thank you all for your support, amazing, so glad I found you, I bought the book Mums on pregnancy and discovered mumsnet through that, what a treat. Thomcat I will look at your site, I haven?t yet as just got out of bed and wanted to let you know how I was. Lots of love - myfairlady

OP posts:
bundle · 04/11/2004 11:25

you sound v chilled, myfairlady, hope all goes well, x

Thomcat · 04/11/2004 11:31

So pleased to hear from you, I keep checking in all the time to see if you've been back. Thanks for letting us know and please, please keep in touch, you're so on my mind.

Thinking of you and here for you, TC x

MissTuesday · 04/11/2004 11:41

hi everyone
myfairlady you must be going through such a difficult confusing time and the posts on here are so lovely and supportive. It does make such a difference. My dh's older brother has Down Syndrome and he is just the most wonderful person and such a precious and loved part of our family. He is in his forties, lives with his partner of over 20 years (she also has ds), they both work, go on holidays, spend time with family and friends, go down to the pub for a beer and generally lead happy and fulfilled lives. Their accomodation is supported in that they live in a house with a constant supervisor around but they have almost total independence. I know of course that there are varying degrees of functioning with ds but Fred and his partner are, and always have been, a source of great love and affection in the family. At the family dinner we had before our wedding, when both families come together, everyone was extremely moved by the speech Fred made about dh and I, about his love for his own partner and about how much he loved his family. Sure his speaking can be difficult to understand but the sentiment wasn't. DS people tend to be so full of love, I'm often struck at how gentle and kind they are and learn a lot from these two very special members or our family and to be honest, I can't quite imagine the family without them!
Thinking of you and sending positive thoughts
xx

Tallbird · 04/11/2004 11:49

myfairlady, hope you are doing OK. Try and take it easy, and not worry too much about the results - though I know from experience that it can be a really tense time. At least when the results come back, you have some more definite facts to deal with - which is somehow so much easier that risks and statistics. Thinking of you.

Thank you so much to everyone else for your kind thoughts. I have found the support I have got through Mumsnet invaluable !

bundle · 04/11/2004 11:51

tallbird, i had an edwards scare and a close friend had a patau termination, so my heart really goes out to you, xx

Original poster
myfairlady · 04/11/2004 11:58

I have read a bit of the special needs link that Thomcat left early on and have looked at the skyjumping page on the DSA site, you are brave! I will of course, as a lot of you suggest, inform myself as much as possible, and my husband when it comes to it before making decisions. I would very much like to meet DS children, but not untill I have had the results I don't think. One step at a time. If the results tell me we have a DS baby then would love to meet up with you and lottie Thomcat, thank you so much. Must try and do some work now...slowly xx

OP posts:
Thomcat · 04/11/2004 11:59

MissTuesday, i know your post was intented for myfairlady, but I can't tel you what pleasure I took in reading that. It's always so good to hear positive stories about people with special needs, so many people out there write people with DS off, they just presume they'll be burdens to society, unable to live fullfilled lives, unable to integrate with the rest of society and that just isn't true, as you have just demonstrated.

Also things have changed so much in the last 20 years as far as the support and help, therapy etc that is available to people with DS.

I was in the bank last week in front of a teenager and her mum. The teen had Ds, we were chatting away, she was actually incredibly easy to understand and had no speech problems at all, she was so sweet, very freindly and chatty, just a normal, very pleasant teenage girl.

Thank you for sharing you experience with myfairlady and in turn with me TC x

Thomcat · 04/11/2004 12:01

Hi myfairlady, yes, look just take it easy, no need to do anything at all, but if you do find yourself at that crossroad like I said, you know I'll be there if that's what you'd like. Take care of yourselves and know that whatever happens you have found a source of great support and advice in mumsnet.
TC x

MissTuesday · 04/11/2004 12:07

Thomcat you are lovely and Lottie is a very very blessed little girl to have you for her mother!
I'm so glad my post was a pleasure, we adore Fred and because of him, the thought of a ds baby doesn't terrify us at all. Sometimes I think the fear of the unknown can be the worst thing of all...

xxxxxxxxxx

Original poster
myfairlady · 04/11/2004 12:08

didn't get misstuesdays message before I posted my last, thanks for your story, very encouraging. this message posting thing goes fast doesn't it?, your all at it!! it's lovely. chat to you soon

OP posts:
Thomcat · 04/11/2004 12:40

Thanks MissTuesday, but I'm the one who's blessed.
She makes it easy to be a mum, I just try to do her justice but not sure I'll ever really be able to, I can only try to make her as proud of me as I am of her.

Fimbo · 04/11/2004 12:50

I would just like to say that your Lottie is a beautiful little girl Thomcat. I am still thinking of you Myfairlady, I will keep checking in to see how things are progressing. Love from Fimbo xx

Lonelymum · 04/11/2004 13:32

Myfairlady, I have only just seen this but I wanted to add my support. I had what was regarded as a high DS result with my last baby when I was 39. Trouble is, my result looks pathetic compared with your as it was only 1 in 70. Nevertheless, the medical staff raised the alarm bells and I had a very stressful few weeks while I waited to find out the result ( he was fine). I didn't want amnio or CVS as I had already lost the baby's twin (at 9 weeks) and I was scared of losing baby. Also, I decided (very doubtfully, though) that I wouldn't terminate a preg. just because the baby had DS. I have to admit, though, that I am so glad I didn't have a DS baby. I was dreading other people's reactions more than anything. I tried to hide the pregnancy for weeks, well, really the rst of the pregnancy, just in case he did have DS. I didn't want other people getting excited for me and then seeing their faces when they saw the baby. Hope that makes sense.
Anyway, the pressure must be phenominal on you right now and I just wanted to say I sympathise and hope you are able to face the future calmly whatever it may bring.

Original poster
myfairlady · 04/11/2004 16:02

Hi lonelymum (which I hope you are not by the way)thanks for your message and support. I am calm but I took a walk in the park today and started feeling jealous of all the mums with "normal" children. It really shocked me as A. I don't know the outcome of mine yet and B. it's what I had for soooo long when I was tryin to get pregnant for 4 years and I don't ever want to feel it again, so I blotted it out and decided that I am not going to feel sorry for myself. I feel that this situation has been handed to me because it is something I'm supposed to cope with. However, watch this space, I might still flip out yet. I will keep you all posted on my test results. thank you again x

OP posts:
Easy · 04/11/2004 16:11

Myfairlady

Haven't read all of this, but agree with eidsvold. decide how the information would be used if you go for extra tests.

I had ds aged 38 (me not him ) and had all the tests going, because I KNEW I didn't want a SN baby myself (I'm disabled, made my choice, respect everyone else's views). DH and I agreed before I conceived that we would terminate an 'at risk' foetus. So had extra scans and CVS to make sure.

But if you will have the baby whatever, then there is no point in endangering the pregnancy with the tests. Thats my opinion.

And please, if you decide not to go ahead, don't let other people make you feel guilty. There are some choices we have to make for ourselves in this world. (oops, whole different thread I think)