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Original poster

Been booked for amnio in 2 weeks after 'bad' nuchal result.

66 replies

pie · 17/04/2003 16:53

I just posted this on another thread:

I went through all the usual stuff with the midwife, then they sent me over for an ultrasound. The sonographer umed and ered said there was a raised nuchal growth larger than 14 weeks should be. They sent me for a walk to get the baby to move as she wanted her supervisor to look at the scan. So the supervisor ums and errs. Then they send me up to the Centre for Foetal Care. The doctor asks what they told me down in ultrasound. I say only the raised nuchal fold.. Hes says so they didn't mention a massive growth on the spine?

Er no....

So he hooks me up to a state of the art 3D imaging machine, the only one in the country. After 50 minutes of poking he says he can't see any spinal or brain abnormalities. But as this pregnancy wasn't planned and hence I didn't take folic acid, he want to do another scan in 2 weeks to follow the spina bifida querry up.

Then he says I want to do a CVS and take samples for a Down's test as he has calculated my risk as 1 in 300. I say ok get it over with so that I can have those results when I go back in 2 weeks.

He preps me then stops before the needle goes in. He says that if he isn't happy with what he sees in 2 weeks re:the spine then he would have to do an amnio. So rather than do 2 risk increasing procedures in 2 weeks he'll do one amnio in 2 weeks for the Downs and if necessary spina bifida as well.

My questions are:

Has anyone gone through this nightmare and had a test that showed NO abnormalities?

Has anyone had a test that has shown abnormalities and what did they do?

Is there anything I can do to stop myself going mad whilst I wait for the test and then the results?

OP posts:
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arabella2 · 27/04/2003 22:40

Hi Pie
Would like to add my two cents worth - with ds I did the triple blood test which came up with a 1 in 10 results for downs. I would not have had a termination but I had an amnio (after really agonising about this and once going to the hospital and not getting it done, then going back there again another day) which came back fine. I had the amnio because I couldn't have spent the 5 following months not knowing whether our baby was going to be disabled or not. I have decided not to have the triple test if I am ever pregnant again as it is highly unreliable - my result was very high for downs and ds is fine and conversely you can have a low result for downs and your baby could have the abnormality... Sounds like a somewhat dubious test to me!
I had the fast track amnio as well (and paid for it) and don't think I could have survived otherwise, the fear was awful. If you can have the results quicker I would definitely go for this. I suppose a thought which helped me a little is that everything in life happens as it is supposed to...
I wish you the best of luck and I'm sure everything will be fine... I think to a certain extent hospitals are scare mongers (spelling?). I was angry with mine - after my 1 in 10 result they were using that sympathetic counsellor speak with me and you could see they thought the baby definitely had downs... Not that downs children are not lovely souls because I think they are (the whole experience made me think about the disability a lot more, something which I should but have not as yet followed up).
Maybe you could make a list of activities that always involve you a lot and try to do something each day (if this is possible) until you get your result in order to make the time go quicker and more enjoyably.
xxx

emwi · 28/04/2003 16:43

I had a triple test which showed a risk of Downs of about 1 in 45 (I was 35). I had a scan which showed no abnormalities - the dr said the risk was now probably 1 in 70. Husband and I decided not to have amnio because of the risk of miscarriage and because we would have gone ahead with the pregnancy anyway. I only freaked out twice - once when we found out the initial test results and one other time when I was having a bad day. The rest of the time I was fine as I felt I could live with odds of 70 to 1. When she was born one of the first things I asked was "what about downs?" and the midwife said oh yes she's fine.

Original poster
pie · 29/04/2003 09:47

Well my test is on Thursday...I have actually been trying to stay of the net as I keep looking up things about the test and what can happen and just basically freaking myself out...

Anyone got any advice about the actual test?

OP posts:
squib · 29/04/2003 10:02

Love and best wishes to you Pie.

After trying to get pg for 2 yesrs and then two mc, I finally was pg again. The nuchal test was clear but the AFP gave us a 1 in 25 risk of Downs. We went for the amnio and faast track result. After terrible 3 day wait (an here my heart goes out to you) all was revealed to be well with the baby.

My amnio experience was positive. The counsellor was very kind (reminding me that a 1 in 25 risk of Downs meant that I had 96% chance of the baby being non-Downs for eg). The doctors were calm. The procedure did not hurt at all (funny feeling a bit like going over a bump in the road). I was continuously scanned throughout so doctir and we could tel lthat needle was nowhere near baby and that baby was still happily moving about at the end).

The worst bit of the whole thing is the wait for the result and fear of mc. I just took the 3 days off work and took it really really easy. Lots of crappy tv.

Loads of luck and let us know how you get on.

sykes · 29/04/2003 10:10

I've had an amnio - it really doesn't hurt, not your main concern, I know. The waiting is awful but results normally come through in two weeks. Lots of luck.

Wills · 29/04/2003 12:44

Hi Pie,

A friend told me yesterday that she was given the option of having the tests analysed privately for 85.00 and that they turned them around in 3 days instead. The amino was done NHS, just the analysis paid for privately.

HTH

Original poster
pie · 29/04/2003 13:14

Thats what I'm planning to do Wills. I will have the results back for Downs, Edwards and Patau syndrome back within 3 days (but there is a blooming bank holiday so make that 4). The full result will still take 2 weeks. There is a family history of severe muscular dystrophy so I won't know about that for 2 weeks and I don't know how long it takes to get the spina bifida result. Its gonna cost us £80 which is what we had put aside for our wedding anniversary dinner in 3 weeks... So its a bag of chios then.

OP posts:
sprout · 29/04/2003 13:15

Pie, just wanted to wish you good luck for Thursday. Just had my nuchal fold scan and was wondering what I'd do if the results are bad... Thinking of you.

Original poster
pie · 29/04/2003 13:17

I should say its gonna cost £80 to have the results of the 3 syndromes mentioned in 3 days....the full result takes 2 weeks no matter what.

Thanks for the continued support guys. I have been telling myself that having a high risk does not mean there is defintely something wrong. I know I could have been given a low risk and still be that 1 in 3000.

OP posts:
Rosy · 29/04/2003 13:38

But Pie - think how good those chips will taste when you know everything's going to be fine! (Though I think it's shocking you have to pay for the fast results.) I'll be thinking of you on Thursday.

buttercup · 29/04/2003 13:53

hello pie.
I'm afraid i dont have much to add in the way of useful information but i shall be thinking of you on thursday. all the best.

Wills · 29/04/2003 21:26

Good luck for Thursday. I will have my fingers crossed!

Original poster
pie · 02/05/2003 08:21

Well I had the test yesterday...and they lie when when they say that it doesn't hurt! I actually went into shock, almost vomitted, momentarily fainted on the table and then went completely deaf for about 3 minutes.

I get the first set of results (including Downs Syndrome) late Wednesday afternoon and the full reuslt, including the spina bifida, in two weeks. Last night I had more than 4 hours sleep for the first time in 2 weeks, though I expect to be sleep deprived again with worry within a couple of days.

OP posts:
Wills · 02/05/2003 19:37

OH Pie - good luck good luck good luck.

Marina · 02/05/2003 22:36

Pie, sorry it was such a painful and upsetting experience. Did you have someone with you? Wishing you luck with the results.

coely · 07/05/2003 04:36

Hi Pie
I hope you have good results goodluck

LIZS · 07/05/2003 10:52

pie

Thinking of you today - hope all is well

sykes · 07/05/2003 11:08

Lots of luck. It honestly didn't hurt for me - must have been v lucky.

Original poster
pie · 07/05/2003 17:12

Thank you for thinking of me today. I got the Amnio PCR results about an hour ago, and the baby is clear for Downs, Edwards and Patau syndrome. I have to say I cried with relief.

The midwife said that if the first lot of results come back ok the full results are usually clear too, but I have to wait until next friday for confirmation of this and for the spina bifida result. I also hope to get confirmation that this is a little girl and the doctor thought he saw female genetials last week.

So I'm just gonna wail with relief for the rest of the evening!

Quick question, the doctor put his job position as SR on a piece of paper, I'm assuming that this means Senior Registrar, does any one know?

OP posts:
Wills · 07/05/2003 17:13

Don't know about SR but.... Congtulations Congratulations Congratulations.

kaz33 · 07/05/2003 17:13

Great new Pie

kaz33 · 07/05/2003 17:13

News .......

windmill · 07/05/2003 17:15

Yes pie, he will be a senior registrar

SoupDragon · 07/05/2003 17:16

Excellent!

LIZS · 07/05/2003 17:23

What a relief for you all. Hope the other results are clear too and that you can relax a little more after next week.

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