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1 in 30 result today - CVS tomorrow. Can't stop crying.

58 replies

monkeybumsmum · 29/03/2010 15:22

Not sure what I'm hoping to achieve by posting this - am terrified, and I suppose I'm hoping to hear from someone who's been where we are now and had it all turn out okay?

What should I expect from the CVS? Feels like it's happening too fast to really think about it...

Any advice/stories would be appreciated x

OP posts:
monkeybumsmum · 30/03/2010 20:32

Hi fifi We think there may have been something wrong with the kidneys, and also there is no nasal bone present.
I find it really frustrating that even with all this damning evidence the doctor was still saying everything could be fine. Having had the same kind of thing happen with my last two miscarriages (doctor kept telling us it was okay when with hindsight it was obviously going to happen) it really upsets me that they can't give at least some kind of warning... It's pretty obvious to us that it's not going to end well

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fifitot · 30/03/2010 20:43

I think if they were dead certain they would tell you straight but I know the uncertainty will be killing you.

I am hoping you have a good outcome, as is everyone on this thread I'm sure.

Take care of yourselves.

fifitot · 30/03/2010 20:47

BTW - how many weeks are you? The nasal bone issue is linked to week's gestation.

Also try not to research anything else - it only ever makes you feel worse!

monkeybumsmum · 30/03/2010 21:05

Am 13+4.
I couldn't find anything anywhere on the net that wasn't negative about the absence of a nasal bone at this stage.
Am desperate for a shred of hope to cling on to!

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taffetacat · 30/03/2010 21:17

Oh Gosh, I've only just seen this thread.

I went through all of this with my second pregnancy 6 years ago. ( I miscarried the first ). I had an average nuchal but as I was 36, it was around 1 in 200. They were doing some very early research at the time into lack of nasal bone at 12/13 weeks, and couldn't find one, so recommended CVS. Like you, I did some research on the net, and read the results as a 0.5% chance of things being all clear.

The problem with the research I saw was that it was done on such a small sample. I have never researched anything medical online since.

The CVS procedure was fine, they checked for nasal bone again and couldn't find it.I had a call the following day with a more or less all clear, and found out I was carrying a boy.

Went back again at 16 weeks ( Kings ) and the nasal bone was there.

My gorgeous DS, now 6, is perfectly healthy and has a delicious (little) nose.

Thoughts are with you. I am still angry 6 years on about the whole thing.

littletortie · 30/03/2010 21:18

MBM I have messaged you on FB chick- my thoughts and prayers are with you sweetie. After everything you have been through, this must have knocked you sideways.

You know where I am.

lots of love

Ammy

xxxx

monkeybumsmum · 30/03/2010 21:28

Ammy Thanks so much - I did see your lovely message but not got round to going on FB yet after everything that's gone on today. Thanks so much for thinking of me - will try to get on FB tomorrow so I can reply properly xxx

Taffetacat Thank you thank you thank you for that little bit of hope I've been searching for. Your post made me cry - I would be the happiest person alive if we get the all clear. I'm not surprised you're still angry about it - it's an awful thing to have to go through, but thank goodness your ds was okay...

Funnily enough, have just looked at my ds's (3) picture of his 20 week scan and I can't see a nasal bone there either. Mind you, they probably weren't looking for it, as opposed to today where they were

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Goosie2010 · 30/03/2010 21:31

I'm glad it went OK for you today and hope you have managed to eat something. I am about the same as you 13 wks + 2, and am 33.

I don't know if it helps at all but we were told that each of the 3 things seen on our scan could be OK, he said that the nasal bone can grow later or it can be difficult to detect. He was honest and straight with us and said that its not over until those reaults are in as its the only thing that can be certain. So I hope that does give you some comfort, and also when you see the good outcomes from other people on here you must try and take some hope from that too.

We've been constantly on the net too, its hard not to. Hope you get some sleep and will be thinking of you over the next few days.

Ohforfoxsake · 30/03/2010 21:36

Hello, I just wanted to say my little girl had a 1:5 chance of Downs Syndrome, 1:17 of another chromosonal disorder. I had a CVS, and she was fine.

Waiting is so hard. My thoughts are with you, and my fingers are crossed for you.
Good luck.

NumptyMum · 30/03/2010 22:03

I didn't have a nuchal last year, but at my booking scan (a bit late at similar stage to you, 13.5wks) there were obvious abnormalities and the consultant did very gently spell it out for us that it was a severe complication, and probably an indicator of T13 OR T18. In our scan there was cleft lip, enlarged/brightened kidneys and 'holoprosencephaley' where the brain has failed to divide - and that last was the main concern, the main indicator of likely problems (ie T13 or T18).

I think nasal bone is a fairly new marker so perhaps that alone is not enough to give a definite answer on; the kidneys showing bright means there is something going on, but though I'm not certain it might be that this can clear/be rectified. With our scan the thing that definitively WAS a problem was that the brain had failed to divide properly - and that was the main indicator of a chromosomal problem. So although I know what you mean about rather having bad news straight up front, it may be that what has been seen really is 50/50, and no doctor would want to give a definite answer on that basis.

It is really good that Taffetacat has had something similar (re lack of nasal bone) turn out to be OK; just try and get through the next few days as best you can - keep busy if that helps, I went to work as normal as I knew I'd be googling otherwise. I really hope that all turns out well for you... Good luck. And please remember that either way, however things turn out, you will find any support you need on these threads - they were my lifesaver last year.

NumptyMum · 30/03/2010 22:08

Good luck to Goosie too, hope you are managing to get some form of rest - I found having a 2yo around was actually a great distraction, kept normal life on track so we could only obsess about this when he was asleep. Try to keep yourself busy; I hope the time passes quickly until Thurs eve and again, if you need any support you will find it on these threads here. Really hoping you both get to breathe a big sigh of relief... it is horrid waiting.

blowninonabreeze · 31/03/2010 20:13

I've just come back to this and am sorry you're CVS scan wasn't reasuring. Will be thinking of you over the next few days

emomummie · 31/03/2010 21:49

Monkeybumsmum - so sorry you are going through this terrible nightmare. I know very well how you feel as I have just been through something very similar in the last few weeks.(I did post at the time about mid Feb)

I had my nuchal scan at 12+1 and the NT measurement was 2.4 which is just above the normal line but, like your scan, they couldn't find the nasal bone.

Even when my bloods were quite good and made the figures better than I'd expected I was convinced of the worst when I too researched that there was a very low chance of things being ok and we went for a second scan a week later but still no visible nasal bone.
After a 3rd scan at 14 wks with a second opinion at another hospital and still no definite nasal bone and the slightly raised NT I booked in for the amnio at 16 wk.

I stayed away from the net and google while I waited as Fifitot is right, researching at this time only tended to make me feel more anxious.

I had the first result back as normal and have just had confirmation that full results were normal.

Just had my anatomy scan too and all looked fine with the nasal bone present.

Please try to take some comfort from this, I hope it gives you something positive to think about. This site is great for support and making you feel less alone at such a horrid time. I did speak to ARC for advice and support too.

Same for you Goosie - hoping for good news for both of you and anyone else going through similar.

monkeybumsmum · 01/04/2010 18:55

Goosie Thinking of you and hoping you get/have had good results. I am here for you no matter what.
I was anxiously waiting by the phone all day today, but no call so yet another fretful night and another nervewracking wait tomorrow...
Let's hope we have a couple of miracles happen x

Will come on tomorrow and reply to other posts, thanks so much to those who have offered a little hope in a dire situation, it does help.

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Goosie2010 · 01/04/2010 20:53

Thanks very much. You are all so supportive, I'm glad I've found this website and that I saw monkeybumsmum's post at just the right time.

I have not got the results today. I had also been waiting by the phone all day but received a call earlier to say that they will not be in until Tuesday now - there was always a slight chance this could happen, but he was so confident they would be in today. I've calmed down a bit now, just can't believe we've now got to wait the whole long weekend. Just been trying to make some plans for the weekend now to keep us busy, nothing else we can do.

I really hope that you get yours tomorrow and wish you all the best of luck. Yes, a couple of miracles is just what we need now x

taffetacat · 01/04/2010 22:40

Will be thinking of you both this weekend.

monkeybumsmum · 02/04/2010 17:50

We heard this afternoon that it's not good news for our baby, and it's not going to survive.

Goosie I hope so much that you have better luck than us x

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zapostrophe · 02/04/2010 17:52

This reply has been deleted

Message withdrawn

taffetacat · 02/04/2010 18:26

Oh monkey I am so sorry. Be kind to yourself this weekend.

Goosie2010 · 02/04/2010 19:47

Oh I am so sorry to hear this. You must be absolutely devestated. I'm really not sure what else to say at the moment.

I hope you'll feel able to come back on soon and let us know how you are. I'm so sorry for you x

Cantdothisagain · 02/04/2010 20:00

Monkey I am so, so sorry.

As I said somewhere higher up the thread, I've had this happen to me too - twice - once at 13 weeks and once at 20 weeks. Both times my babies had fatal conditions (different ones - one chromosomal and one developmental) that meant they couldn't survive. I terminated twice and it was the two worst experiences of my life.

Anyway I just wanted to say that I know how hellish this is. You will get through it, it's just really really hard.

Good luck and take good care of yourself. Again I am very sorry.

emomummie · 02/04/2010 20:34

So sorry to hear this Monkeybumsmum. Thinking of you.

FabIsGettingThere · 02/04/2010 20:37

MBM - have they said the baby has Edward's syndrome?

fifitot · 02/04/2010 21:27

So sorry.

littletortie · 02/04/2010 21:30

So sorry. x

Speak soon, thinking of you xxxxxxxxxxxxx