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Dreading the worst tomorrow.....

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By Sun 06-Sep-09 09:16:07 Add message | Report | Contact poster

So life is great and we're trundling along quite happily, 41 first baby, scans all fabulous and apart from an occasional chunk of brie i've done everything by the book.
Having the amnio was a bit of "oh will we wont we" but as we're older we decided to go for it - never for a minute thinking anything could possibly be wrong.
Fast forward to Friday when our world crashes down to our feet. Our little baby has 'chromosonal abnormalities, very rare, haven't seen anything like it, surprised the baby hasn't miscarried' - WTF?
Turns out our baby has sex chromosomes XXXXX or pentasomy X syndrome as I now know after many hours on the internet. I haven't read anything positive on the net about this condition, apparently there are less than 100 reported cases since 1963, so i'm hoping the consultant tomorrow is going to tell me something magical and its all a big massive mistake.
Does anyone know if its possible that the results from the amnio can be wrong? Could the placenta have these abnormalities and the baby fine? Can anyone give me a little ray of hope from somewhere????????????? Virtual hugs also gratefully accepted.....

Add message | Report | Contact poster By Tue 08-Sep-09 12:45:18

Hi Mrs Victor, cross posted. How are you feeling this afternoon?

Add message | Report | Contact poster By Tue 08-Sep-09 12:29:00

Thanks for sharing your story Katie, maybe lovely is the wrong word in such a horrible situation, but you sound positive and strong and that can only be a good thing. Relax and enjoy your time with your mum x

Add message | Report | Contact poster By Tue 08-Sep-09 12:27:09

Hi Mrs Victor,

I am so sorry you find yourself here. I won't go into my experience here but it ended in termination (twice). Anyway I have never heard of the condition your baby has so I don't know what kind of choice you have to make, but I just want to say how sorry I am you have any such choice to make. Not fair, not fair.

Take care of yourself and make the most of the tea and toast. I am thinking of you.

Add message | Report | Contact poster By Tue 08-Sep-09 11:14:57

Morning Mrs Victor - i'm so very sad to hear your news. I went through all the 'what if's' too but i think i made the right decision in my case - i just wish it could have been differant. Take your time and make the right decision for YOU. If you want to read my experince i have posted in on this page
Will be thinking of you Katie xxx
P.s Peanuthead i have not seen your specific story but it sounds like you are going through a similar thing.I'm thinking of you too, be stong xxxx

Add message | Report | Contact poster By Tue 08-Sep-09 08:18:47

Ladies thank you for sharing your stories and your words of support, it is helping. I hadn't heard of any of these conditions before the weekend, wish I could rewind to the pram threads of last week, but no, here we all are.
Emotionally I feel very drained, thankfully work flexible so I'm at home just thinking things through. We've made our decision but now have to go back through everything I've read just to make sure. I keep asking 'but what if' but no one can answer me......
This morning I'm going to have tea/toast and watch Jeremy Kyle...a rare treat!
Thanks for listening ..J x

Add message | Report | Contact poster By Tue 08-Sep-09 07:19:01

Sorry and to peanuthead - love and thoughts with you also xx

Add message | Report | Contact poster By Tue 08-Sep-09 07:17:01

Mrs Victor - so sorry to read about what you're going through. We had a daughter with Edwards Syndrome and said goodbye at 20 weeks. (I was 32 at the time) and my consultant put it down to a 'dodgy' egg and said to just hope that that was our bad one and no reason to not try again. We were very lucky to then have a successful pregnancy (but very stressful one) and end up with DS. I'm now (terrified) and pg again but at such an early stage so who knows...

We were at Ormskirk hospital, so i guess not too far from you. Know the feeling about being surrounded by the happy pregnant ladies...you must take some time and be gentle on yourself.

Lots of love to you and Katiecubs....it's the strangest and most surreal time i think. It's 2 1/2 years since we lost our DD and i sometimes wonder if it ever happened as my brain can't get round it all somedays.....I found SANDS to be an amazing support if you need them x

Add message | Report | Contact poster By Tue 08-Sep-09 03:35:14

Hello Mrs Victor

I've read your story and wanted to say that you are very much in my thoughts.

Having had (amongst many other things) a Turners Syndrome affected pregnancy in the past, I had actually heard of Penta X, through extensive and obsessive googling. I'm sure that, after the shock of diagnosis, one of the hardest things to get to grips with must be the very rareness of the condition. I know it must be hard to see a way forward, make decisions for both this pregnancy and indeed the future, when so little is known.

There's no wise words of advice on this - particularly when even medical opinion is so hazy. All you can do is to take the time you need and be gentle with yourself. And talk. This particular corner of mumsnet is fabulous for that and provides a kind and non-judgmental ear for any of your inner thoughts.

Oh, and we are very good at virtual hugs too...

Add message | Report | Contact poster By Mon 07-Sep-09 20:34:15

Have you seen this site www.tetrasomy.com/. Its a support group for tetra or pentasomy X. There are some gorgeous pictures in the gallery. I think its american based, but they have some people's "stories" of what they went through - it might help? Whatever you decide to do, I send the biggest virtual hugs.

Add message | Report | Contact poster By Mon 07-Sep-09 20:20:43

Oh Mrsv, life is so so shite.

And I'm with you with the 41 year old eggs, seems so unfair how so many people seem to get away with having lovely healthy babies at our ripe old age yet some of us get the slap in the face.

Thinking of you, wish there was something comforting or wise to say but there isn't. xxxxx

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Dreading the worst tomorrow.....