Amnio Testing - need some advice....

[Sine]

Hi, this is my first posting to Mumsnet so if it doesn't come out right I apologise!!! I've just had confirmation that I am 12wks. I already have a son of 6 (born by IVF) and two further attempts at IVF 3 - 4yrs ago. This pregnancy is one of those 'miracles' in that my insides are a bit like spaghetti junction so natural conception was a no-no (or so we thought!) Anyway as I will be 40 when this baby is born I've been told that my baby runs the risk of Downs Syndrome. I know the decision of have an amnio can only be made by me and my hubby but I wanted to know if anyone can tell me from firsthand what it's like. Also, I know there is a risk of miscarriage and as this baby is a very welcome 'surprise' I would be devestated if I miscarried a healthy baby due to this test. My health authority is apparently the only one in the country that doesn't offer routine scanning at 20wks so my options appear to be slim. I had a scan at 8wks but have only just been told about Nuchal screening which I'm too late for. Does anyone have any advice or comments? Would love to hear from you. Thanks :)

sorry laughalot my daughter is not downs - she is a little girl who just happens to have down syndrome.

My sister had a private nuchal creena s not offered by her helath authority.

DS3 was high risk (1 in 70 ish (bad memory)which was high as I was under 30). They recommended amnio but werefused. The MW phoned every day until we made an appointment, but as were chatting with the pre-amnio nurse we menioned termination a no-no for us (wouldn't be able to emotionally, what message would it send to ds1 who is SN?, plus I have a tendency towards hyperemesis so having just survived that phase of the pg I couldn't face another one- 3 good reasons for us). Oh,and I had nursed kids with Downs and had a was fortunate to be able to see beyond the bad image we were rpesented with.

Anyway, with that nurses support we ran away- literally- before the Consultant who thought we were stupid could get us!!!

Maybe you could get a privtae scan? Or get Dr tor efer you- just coz they're not routine doesn't mean they're not doable; maternal stress is an indicator

Bundle-
Thanks for your support and information...I will keep you posted...I have to know definitively if my child has this sydrome...and the amnio will have to happen. I guess I would rather know now that my baby wasn't going to live, than to be like your friend with a child dying at 3 days old...that is a tragedy that I could not have my girls face. I hope everything is fine and I will try to stay positive XXX :)

Eisvold I wasnt set out to upset anyone I was just saying that it was the choice me and my husband had made and I have alot of respect for people who have children with down syndrome.

syd1999 and Sine, I've just been through an amnio, performed at 21wks, after my 20 wk anomaly scan revealed possible 'soft markers' for Edwards syndrome. For the same reasons as Bundle, I decided to go for amnio. I'd had a nuchal at 12 wks which had given a good result, bearing my age (44) in mind, so decided against invasive testing at that stage, and my consultant certainly didn't push it. In his opinion, the risk statistics are of little relevance bearing in mind the increasing numbers of over-40s having healthy babies. On the other hand, having an invasive test at 21 wks is much more stressful IMO than doing it earlier in pregnancy...

What about a CVs which can be done now and saves the wait? I had a CVS for both pregs and they really set my mind at ease so I could enjoy the rest of the pregnancies.

i wasn't offended - just wanted to let you know the appropriate use of terminology when speaking about people who have down syndrome. I understand that people make choices different to mine but I feel that people need to be made aware the appropriate terminology to use when referring to people.

I haven't had time to read the entire thread, so sorry if I am repeating anyone. I had an amnio with ds at 16 weeks. Putting in the needle did not bother me at all. However, when they took out the amniotic fluid it was quite uncomfortable and I felt weak and crampy for a few hours afterwards. Waiting to find out the results was difficult. It took about a week.

As far as the risk of miscarriage goes, you have to weigh the odds. I haven't looked up the exact numbers tonight, but basically you want to be in a category where your risk of a problem is greater than the risk of miscarriage from the procedure. So, for instance, I think my numbers are along the lines of: risk of defect 1 in 110, risk of miscarriage from amnio 1 in 190.

I am currently about 6 weeks pregnant and we have decided to have amnio with this pregnancy as well. It was not an easy decision either time and I'm not looking forward to it, but am convinced that it is the right choice for us.

HTH

I am currently 22 weeks pregnant with my second child. At 16 weeks I had the midwife knocking on the door saying that my blood tests had come back 1:50 for Downs and that I was to go to the hospital the next day to discuss my options. Obviously very scared but went along. After discussion with hospital midwife decided on an amnio which was done there and then. As my hospital ran the FISH scheme, I only had to wait until the next day to get the results. Everything was clear and I found out I am expecting a girl. After my first pregnancy where I had no problems and my results were that low that I didn't even get a number, I didn't know what to think. The most painful part of the amnio was when the consultant pulled the needle out. All the time I could see my baby on the screen so I didn't look anywhere else.

I don't think I could have gone through the pregnancy not knowing if everything was OK or not, but every mum is different. Luckily for me and DH everything is fine and we are looking forward to the birth of our DS around 18 August.

Sarahlou, sorry to be thick but what is the FISH scheme?

Sine, I am sorry you are facing such difficult decisions. I hope you are getting closer to the decision which is right for your family. Take care and best wishes.

ChicPea, CVS carries a similar m/c risk to amnio--slightly higher in some parts of the country.

Teacups - FISH is a way of looking at the number of chromosome 21's in the baby's cells - it is much quicker than the traditional method (which involves growing the cells and looking at all of the chromosomes). It normally takes 24-46 hours to get a result which is specific for Down Syndrome...this is then followed by a standard chromosome analysis, to rule out any other chromosome abnormalites, which takes about a further 2 weeks.
Another way of getting a 'quick' look at the number of chromosome 21's is QF-PCR, which is available in some regions.

Syd1999 you were scheduled for an amnio 1 May - I just wondered how you got on? Hope it went OK for you.

I've only had my AFP blood test this week (15 wks) so I'll wait and see what the odds are before I make my next decision - one step at a time! :)

Sine...I had the amnio May 1st and I just got word today that all is NORMAL...thank GOD!!! We are having our 3rd daughter with the help of GOD...But I will say this whole experience has been a long, very stressful affair!!! With my 2nd child they lost my bloodwork so I had virtually NO testing and NO worries...this time...so many tests and so many worries!!! I feel that ignorance is bliss. But, the amnio itself (5 min procedure) no big deal...giving blood was more painful, but the aftermath and mental drama before...was horrible. I KNEW the baby was healthy all along...but did the tests since I'm 36 and at greater risk...but like I said the mental drama has been terrible...I haven't enjoyed the pregnancy at all...Hopefully now I can...even 4 days after the amnio i'm still worried about misscarriage...It's def. not worth it to me!!!

Syd1999, Really glad to hear everything OK at least now you can relax and enjoy!