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Original poster

1 in 4 chance of down syndrome in a mess can anyone help?

54 replies

Coxy7 · 04/07/2012 09:24

Hi

I'm 38 and have been trying for a baby for 5 years we have just undergone Ivf treatment and I'm now 12 weeks gone. Yesterday we went for a private 12 week scan but the results came back 1in 4 chance of downs.
The nuchal translucency behind neck came back as 3.8, bladder size 12.8 megacystis plus baby has a leak in the heart.

Were going back today for a cvs and should get the results on Friday but things arent looking good..
Been crying all night and am in a complete mess

Can anyone shed any light

X

OP posts:
Excitedbutscared84 · 05/07/2012 11:55

No one has the right to tell people there opinions are wrong thats why they are called opinions not facts,regardless of what they are!!! If you feel they are insensitive thats fine but you also cant make judgements on people intelligence.

This thread has turned into a witch hunt and I am sadden to say I find how people are not allowed to have there opinions really disappointing thats the whole point of using such a public domain such as this

YouOldSlag · 05/07/2012 11:57

mIhappybunny- patronising much? I am aware of what opinions are thank you, I was pointing out that there is a time and a place for them by calling that poster insensitive. I really spilled my guts there to help the OP and you come on here and tell me (rather snippliy) what opinions are???

This is not AIBU- the OP has come here for sympathy, empathy and kind words, not unhelpful and judgemental posts.

sammyleh · 05/07/2012 12:08

With respect, I doubt very much that arguing is going to be very comforting to the original poster. She came for support and its not fair for her to read the above posts xx

minipie · 05/07/2012 12:25

Yes, I hope that the OP has stepped away from this thread as it's no longer helpful unfortunately.

I note that it appears to be the first post by mlhappybunny and excitedbutscared84. Sockpuppets spring to mind.

Coxy if you are still reading, best of luck for your results x

YouOldSlag · 05/07/2012 12:32

Yes, wishing you well OP. It will feel like the longest you have ever waited for anything, but hopefully it will be a good outcome.

My 2nd CVS told us that DS2 would be healthy and he is nearly 3 now and a wonderful boy. I wish you joy in the future.

Original poster
Coxy7 · 06/07/2012 19:32

Wow guys

Glad I didn't read zoey message and it was deleted before I logged back on...

Unfortunately we have just had the dreaded phone call and the news is not good.. Baby has been diagnosed with down syndrome..

I don't really know what to do this was our last chance as we have no more money for Ivf and to be honest don't think we could go through it again..
I know down syndrome children are increadable as I've read some lovely stories but I'm just not sure we are strong enough cope...

At the moment it all still dosent feel real can anyone out there help with the next steps.

Big love
Xx

OP posts:
Kelbells · 06/07/2012 19:38

Coxy I read your thread before and didn't contribute as I don't have any experience.

But I couldn't read and run this time, I just wanted to say that my heart goes out to you completely and whatever decision you make will be the right one for you as a couple.... Thinking of you x

Dropdeadfred · 06/07/2012 19:42

You need time to read as much as you can and may e talk to people before making a decision. Only you know your fears and worries about your child

YouOldSlag · 06/07/2012 19:46

I am so sorry.

Have you thought of visiting some people with Downs syndrome? maybe do that whilst you think everything through.

Whatever your decision, don't let people judge you. Only you and your DH can decide and my heart goes out to you. Whatever your decisions will be, I am sure it will be well thought out and well informed and that's all anyone can expect of you. Big hugs to you. xxx Thanks

minipie · 06/07/2012 19:47

Oh Coxy so sorry it wasn't the all clear. Best of luck with your decision, there is no right or wrong just whatever is best for you and your DP.

missmapp · 06/07/2012 19:47

OP- I had a 1 in 4 result for ds2- we had an amnio and all was clear- he has noonans syndrom and a congential heart defect, which can lead to a thicker nuchal fold, but both are very mild. It can be okay- thinking of you and hoping the time passes quickly.

missmapp · 06/07/2012 19:47

BTW his nuchal was 4.6mm

Londonmrss · 06/07/2012 19:48

Also just want to express support. I used to work with DS children- you're right, they are as incredible as all children. But the choice is totally yours, and you should be supported with whatever choice you make.
If it is something you want to continue with, you will find the strength to cope and you will love whoever your baby is. If it's not right for you, that's totally fine. Think about what you and your partner want, as well as how it would change your idea of parenting and what else would be in your future.
But no one else can tell you what to do.
Basically echoing kel above- whatever decision you make will be the right one for you.
Good luck.

missmapp · 06/07/2012 19:48

Sorry, just led last post- talk lots and decide what is best for your family xx

backinaminute · 06/07/2012 19:50

I don't have any experience of this but just wanted to say that I'm thinking of you.

SauvignonBlanche · 06/07/2012 21:04

Congratulations on your pregnancy, I'm sorry things haven't gone as you expected.
Take time to examine all your options and try to keep your mind open.

Four4me · 06/07/2012 21:42

Wow coxy what a difficult journey you have been on for the last 5 years and then this.

Massive hugs. Today must have been so difficult.

Take your time and get advice and support from those around you. Mn is fab for asking those questions that you need to ask. There is always someone who has the answers. That have walked in your shoes.

I am more than happy for you to pm me if you need to. My dc1 has downs (diagnosed at birth- so totally different situation) and I was literally on the floor devastated when they told me. Am happy to answer any questions and can guarantee that I will be totally non-judgemental of your choices.
I am sure it will be a sleep-less night ahead, take care and be kind to yourself.

Four4me · 06/07/2012 21:48

Plus there are lots of threads on the section called 'antenatal tests/choices' which will give you the answer to many of your questions about procedures etc. Xx

Original poster
Coxy7 · 06/07/2012 22:33

Thank you all for all you kind messages

It makes me feel better knowing there are really genuine people out there who care

Gonna try and get a little shut eye but I doubt it will result to much

Nite nite
X

OP posts:
YouOldSlag · 07/07/2012 08:36

Feel free to PM me Coxy, if you are thinking of next steps or would like to ask anything. Take care.

terilou87 · 07/07/2012 17:35

my aunt was 1 in 7 chance and her daughter was fine 14 yo today, hope all goes well for you xx

AKMD · 07/07/2012 21:31

So sorry to hear that Coxy. I hope you are getting lots of real life support.

sammyleh · 09/07/2012 10:53

Just came back to this after a weekend offline, I'm sorry the results didn't turn out as you wanted Coxy. This site is an amazing hub of information and support, and there's so many other mums in your position. Whatever your decision is in the end, its yours and nobody elses. Sending you my best wishes and a massive hug xx

Original poster
Coxy7 · 10/07/2012 09:55

Hi youoldslag

I don't know how to pm you I'm so crap on the pc but would like to as I'm not coping well and am in a complete mess...

Can anyone let me know how I do it?

Thanks

OP posts:
bonnymiffy · 10/07/2012 10:23

Hi Coxy,
I saw this thread when there were less posts and found it a little upsetting - my daughter, now 14 months has Down's. She has Down's, she doesn't suffer with it. She is delightful. We didn't have any ante-natal tests, as we decided that we would love our baby whatever. And we do.

I've found that there is loads of medical support - she has been tested for heart problems (small hole in the heart but nothing serious) hearing, sight, speech and language development. There is also loads of emotional support available via the DSA and other organisations, it's up to you how much of that you take up. I will be honest and say that I have cried bucketloads.
The advantage of Down's is you already have the diagnosis and can prepare yourself, unlike (for example) asbergers, autism which takes a while to be diagnosed and causes (from what I understand) loads of heartache before then.

I thought I would never have children, being 41 when I got married, and receiving the news when your gorgeous girl is in your arms for the first time isn't easy (understatement) but if I can cope with it, I'm sure anyone can.
I've been a little annoyed by people who've said about children with Down's doing this and that - something that other children might do fairly easily - but the best inspiration I've had so far is about an Irish girl who has now started at University. Not everyone else does that.

www.irishcentral.com/news/Galway-girl-hailed-as-an-inspiration-to-those-with-Down-syndrome-131506263.html

If you'd like to PM me, feel free (no-one has pm-ed me before)