1 in 9 chance of downs syndrome. Do I have an amniocentesis?

[lolliehp]

Hello, I am currently 17 weeks pregnant and have just been given the results of my quad blood test and they have said my chance of a downs syndrome baby is very high at 1:9. I wouldn?t have a termination as the baby is wanted whatever the result but I am struggling to work out whether I should have an amniocentesis so that we can prepare ourselves for what to expect over the next few months.

I suffer with depression and am scared that I would not be able to cope as I already have a 5 year old. My partner and myself realise it is not the end of the world to have a downs child but its all come as such a shock. Any help would be appreciated. Thanks.

[lolliehp]

forgot to say that I am 40.

[MrsCLH]

Hi lollie

I don't have any experience of this or advice really but didn't want to read and run.

I guess if you wouldn't have a termination, is there any point risking an amniocentesis? On the other hand the risk of miscarriage is small and at least you would be prepared for what was to come. Either that or the result would be negative and you could relax. I guess that's what you have to weigh up really.

Sorry I couldn't be more help but hope everything works out for you.

Mrs H xx

[CoteDAzur]

Part of that risk assessment is your age, so it might help to try to find out how bad the blood test result is without taking into account the fact that you are 40.

In your place, I would also find out the miscarriage rate of the team that carries out amniocenteses in your hospital, since that is the figure that most concerns you, rather than the international average.

At the end of the day, if you will not abort anyway and if you don't want to risk this pregnancy, then the logical thing to do is not to do an amniocentesis.

If you suffer from depression and doubt you would cope with a DS baby, maybe you can find a playgroup of DS children (ask on SN board?) and see what it is like for yourself & talk to their parents.

[TrinityIsAShreddingFatRhino]

I am not in the same postiob as you as I have had my children when I was younger BUT

I never had the blood tests at all with any three of my children because I was not prepared to have an amniocentisis and I would not have aborted regardless

in your op you say you wont be aborting therefore in my mind I woulnd;t have the amnio because of the risks involved and I'm sure you will be helped if your baby needs extra help

and I hope all is well

[lolliehp]

Hi, thanks for your post. I have been looking for as much information on the net as I can but too much googling isnt helping!! I cant get past the thought of risking a miscarriage on the amnio when the results could be fine anyway. But on the other hand we need to be prepared - arghhh! xx

[lolliehp]

thanks everyone for your posts. I think I know what the decision will be (or do I?) but its just nice to get advice from others. Thanks again xx

[TrinityIsAShreddingFatRhino]

prepared for what exactly?

I'm not being funny but if your child suffers from downs sydrome then you will be advised at the hospital of anything you need to know

surely you would still just need to hold, love and feed your child....

I know nothing of downs sydrome BUT I dont think that hospitals check if you;ve had the anmio(and therefore prepared) or not and then just say sod you if you weren't aware

the risk of miscarraige for me is too much to do it so you can be 'prepared'

if you want to be prepared read up now and be prepared yourself...

[coccyx]

i have had 4 amnios in total (1 for each pregnancy). I would rather know for definite and find out as much info as i could before my baby arrived.
For me not knowing would be harder.
The risk of miscarriage at my hospital was 1in200. They used an ?infra red ended needle as easier to identify on the ultrasound

[EveryonesJealousOfGingers]

Basically came on to post what CoteDAzur has said already! I think your instinct not to have amnio is exactly right, and you can prepare in other ways. Another MNer linked to this amazing and beautiful blog - warning, it will make you cry but in a lovely way I hope. Good luck with your baby, whatever size, shape, colour, sex or type he/she is :)

PS no direct experience myself but my niece has downs and we elected not to have ANY screening whatsoever, for the reasons you have stated.

[lolliehp]

...prepared as in knowing what to expect, finding out all of the information needed about heart defects etc. and generally finding out about all of the help and support availble. Holding, loving and feeding my child has absolutely nothing to do with what I have asked.

So thanks for being so blunt... I thought these sites is where people come for friendly advice not 'advice' that makes people more upset than they are in the first place.

[TrinityIsAShreddingFatRhino]

I'm sorry ot have hurt you BUT seriously all those things you have mentioned that you want to know what to expect can be found out NOW without having the amnio

research, talk, ask about all that now about a child that may be

no harm in it and you are prepared
I'm not being funny, I just dont see why you need to definitely know you are going to have a downs baby before you can be prepared for it

[lolliehp]

thanks for all of the friendly posts.

TrinityIsAShreddingFatRhino - I just thought being prepared with as much information as possible was the right way to go....

[TrinityIsAShreddingFatRhino]

I am giving friend;y advice
I want you to realise that you can be prepared without having an amnio thereofre making your life slightly easier
If thats not friendly advice then I dont know what is

[TrinityIsAShreddingFatRhino]

yes it is the right way to go

be as prepared as a prepared thing
find out ALL about everything you may ever need to know

BUT you can do that without having the amnio
that is all I'm saying

[d0gFace]

Advice is advice you never know what sort you're going to get. :)

Sometimes its hard to understand what someone means in text with not all the information and lack of tone. I dont think it was anyones intention to upset you and im sorry you feel that way at such a stressfull time.

Ive never been in your situation but personnally I would do the research without knowing either way, I dont think I would need to definitively know but thats me. Its hard to give advice unless you've been there and everyones different.

Hope you get a good outcome and Goodluck with your pregnancy!

[lolliehp]

prepared for what exactly?

not blunt at all.

[d0gFace]

From what Ive read about downs (Im only 9 weeks, so just reading out of interest) you dont know what possible problems you will get untill the baby is born. Theres a wide range of things that may or may not apply as its so varied.

[EmmalinaC]

Lolliehp I was in a similar position to you with DD (although I found out earlier and risk was slightly lower) and I decided to have a CVS, which is similar to amnio. The need to know what lay ahead was overwhelming. I didn't want to 'be prepared' for whatever the outcome might be. I wanted to know.

It's worth noting that the risk associated with these procendures is largely to do with the skill of the practitioner. We paid to see Professor Nicolaides at the Fetal Medical Centre whose miscarriage rate is nil. (He also sees people on the NHS).

This is a very emotive subject. You need to do what's best for you and your family.

I wish you all the best, whatever you decide.

[lolliehp]

thanks ladies xx

[argghh]

That link did make me cry.

Lollie at our age stats are always skewed because of age but even with 1:9 thats 90% chance your baby will not have downs.

[harassedinherpants]

I'd hate to be in your position, and this is why we've decided not to have the tests done. I wouldn't want the amnio and wouldn't terminate so made the decision not to have any tests done with dd (she's perfect) and also with this one (I'm 10+4). I'm also 40 and I don't know if it's true that that would automatically give a high risk, but that would concern. Having had a mmc and mc this year we wouldn't risk the prg at all.

I guess that's what you need to look at now: the risk of mc for the team that would perform the amnio, would you terminate and if not is it worth the risk of amnio.

Good luck, I hope the bloods bring you good news!

[Northernlurker]

Amnio is not the only way of getting information about your babuy's condition. Have you been offered a scan looking for soft markers for DS? In particular a detailed cardiac scan - which is possible at your stage - would give you a lot of information about your baby's likely state of health. A clear scan doesn't mean no DS and a cardiac defect doesn't mean DS but either way you would have more information about the situation.
I agree though with what I think Trinity was saying though - if you would not terminate then just prepare for a baby because that's what you're having None of us ever really know what will befall us. All the tests and scans in the world just produce a predicted future but real life is far more complex and more wonderful.

[issynoko]

I just had a high risk result for Downs. The risk of 1:87 was purely on my age - nothing else - but the bloods brought it to 1:43. The nuchal fold was completely normal. That said the bloods were still in the normal range but showed a pattern found in babies with Downs although also in completely normal pregnancies. I did have a CVS although I found out the mc rate of my consultant - it is a specialist unit and thier rate is much lower than the national average. It was a horrible decision because I wasn't sure if I would terminate or not. As it turned out, all is well and the odds are still that it will all be fine for you too.

[Bucharest]

I had an amnio with no prior bloods causing concern, because of my age.

I'm just the kind of person who has to know and has to know now!!

It wouldn't have changed my mind about anything

Good luck with your decision.

[issynoko]

They calculated the age on how old I will be on the due date by the way, which seemed a bit skewed in the first place. But I guess a guideline is needed to be drawn somewhere in working out stats. Good luck whatever you decide and I wish you and your family all the best.