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Original poster

Should we go for an amnio?

29 replies

Onlyconnect · 04/02/2013 18:01

I am 45 and unexpectedly pregnant. I have had the 12 week scan and blood tests and have been given odds of Down's of 332:1.
I have been told that we could still go for an amnio despitethese low odds. This has placed me in a dilemma. Although these are low odds (in fact until I was told I could still have an amneo I thought it wouldn't be made available to me with those odds), there is astill a chance I could have a Down's baby. My partner and I had decided we would treminate a pregnancy if the baby was Down's.
The main reason I am thinking I don't want the amnio is because the whole thing will drag on yet further when in fact I alreday have a pretty good answer. I have found the last few weeks very difficult. I have been extreemly worried and becuase we haven't told anyone about the pregnancy I haven't had anyone aprt from my partner to talk to. I have found it a real strain keeping it sectret, partly because I've been feeling pretty ill too.
Any thoughts would be greatly appreciated.

OP posts:
lljkk · 04/02/2013 18:08

How would you feel if the baby is born with DS?

Heavywheezing · 04/02/2013 18:09

What is wrong with a baby with ds?

Apart from the fact you are 45?

ladymia · 04/02/2013 18:09

It's a decision obviously only you can make but given that you would terminate should the baby have DS, I would say go for the amnio.

Original poster
Onlyconnect · 04/02/2013 18:11

I think my artner woud really struggle. I don't know how I'd feel. When I was pregnant with DD1, I didn't ave any tests because I genuinely didn't mind. Now it feels very different, partly because of our ages and because this was not a planned pregnancy. I do sant o avoid a Down's baby. Which I suppose means have the amnio.

OP posts:
13Iggis · 04/02/2013 18:12

Unless you have had an amnio showing otherwise, there will always be a chance of your baby having ds. Do you feel, now pg, that you know 100% you would terminate if that is in fact the case?
Remember at 45 your odd will never be perfect. (Having had a child at 42 I know that!)
I don't know what the mc risk of the amnio is (I'm sure they have informed you) but that is obviously another factor.
There is a whole section of antenatal testing on mumsnet talk, which might give you further advice.

duende · 04/02/2013 18:12

Hi and congratulations.
I think you have been given quite good odds. Fwiw the risk of miscarriage with amnio is about 1:100 so much higher than your current DS risk.

Some private antenatal clinics in London now offer Harmony test- it's non invasive and supposed to offer nearly as certain results as amino. It's expensive though not sure if available outside of London yet.
There have been some threads on MN about it recently.

ladymia · 04/02/2013 18:13

And what is you reason for not wanting the amnio?

HumphreyCobbler · 04/02/2013 18:14

If you would terminate in the eventuality of a child with Down Syndrome, then having an amnio is a reasonable course of action.

the odds you are given are pretty good though.

Original poster
Onlyconnect · 04/02/2013 18:14

heavy I t hink a baby with mild DS would be copable with. Severe DS would change our whole lives. I would worry about what would happen to him/ her when we are old, which would be quite soon. I'd worry about my daughter and the massive change to her life which is coming anyway but which would be even greater if the baby was DS. My aprtner would struggle to cope. He admits that, and knowing him he would struggle. He finds coping with stress very difficult.

OP posts:
13Iggis · 04/02/2013 18:15

I would worry about the effects of having a termination based on fears that your partner would struggle. Do you feel the same as him?

FrameyMcFrame · 04/02/2013 18:19

Amnio increases risk of miscarriage though.

13Iggis · 04/02/2013 18:19

X-posts with OP

lljkk · 04/02/2013 18:21

This is so emotive, thread will explode soon.
Is there no one IRL you can talk to about this, who would support you either way?

Paradisefound · 04/02/2013 18:30

The odds are in your favour considering your age. If you terminate, how easy will it be to conceive again?, will your odds be worse next time?
You say you would terminate if DS? I know quite a few severely disabled and much loved children ... What will you do if your child is disabled in some other way?? I think if you want to start a family, you have to be prepared for anything.
I know it's a difficult decision, a good friend had a 1:2 risk of DS and was strongly advised to terminate, she didn't, her son doesn't have DS or any other health issues. With your odds I personally wouldnt be considering an amino.. I'd be happy carrying that level of risk. Good luck whatever you decide.

lightrain · 04/02/2013 18:33

Thing is, nuchal is not diagnostic, it only gives risk factor. Depends now big you think the risk is. Why don't you look into the harmony test?

cece · 04/02/2013 18:55

At 42 I had no diagnostic testing (nuchal or amnio or CVS) as I knew I would not terminate for DS. Therefore if you know you definitely would, the only way you will definitely know if the baby is DS or not is to have the amnio. Personally the risk of mc stopped me going down the testing route.

Quilty · 04/02/2013 19:18

If you feel that the uncertainty of not knowing for sure will cause a great deal of stress and anxiety throughout your pregnancy then I would say go for the amino. I would advise that you ask about how often amnios are performed by the consultants at your hospital, the standard figures given are 1:100 chance of miscarriage but in reality the risk is lower when carried by a consultant who does the procedure on a regular basis.

The main question you have to answer (which I'm sure you realise already) is would you definitely end the pregnancy if you discovered your baby has DS or any of the other chromosomal conditions that the amino will test for? And of course this is something only you and your partner can answer. Even if you feel very sure about what you would do now you can never know if you would change your mind once if it came to it. There is really no right or wrong decision in my opinion.

Original poster
Onlyconnect · 04/02/2013 19:42

Thanks for your replies. One factor is that the pregnancy was an accident and although I am coming to terms with it now, I was very upset for a while. I have struggled with coming to terms with having a baby at all.
When I had the scan the woman doing it said the baby's skin was normal thickness. I take that as a good sign. I don't want the amnio partly because I just don't want this to go on and on. I wish I didn't know I could have it. I wish I hadn't phoned the hospital when I got the results.....

OP posts:
Missingthemincepies · 04/02/2013 20:06

If you're near London then consider the harmony test. Don't know details but I understand its just a blood test they screen for minute amounts of foetal DNA, so will give you an almost certain result without being invasive. At least give them a ring at fmc and ask. Would be worth a train journey IMHO.

Otherwise, it's completely up to you, but if you think DS would be unthinkable for your family (and that's your decision, everyone's different) then I think you should have the amnio. Nothing else will put your mind at ease. Ask your obstetrician for their personal risk figures, a lot have figures of only 1in500 or so.

The risk your combined screening has given you is really very good. I guess you have to ask yourself what risk you would have been happy with, because 1 in thousands was never going to happen at 45. You have a 99.3% chance of your baby not having DS (I think my maths is right?) and I'd be happy with that.

Good luck with this very difficult decision.

NewChoos · 04/02/2013 20:11

I'm 40, my odds are 1:500. We are opting for an amnio. We would not proceed with the pregnancy either if there are problems. I'm not going to justify our reasons on here and not intending to upset anyone, I know how emotive this is. However, if you and your partner feel you couldn't cope/would struggle you have to do what's right for you. Other peoples opinions on here don't really matter, they won't be looking after your child.
Good luck.

Missingthemincepies · 04/02/2013 20:17

Good luck with your amnio newchoos.

Gingerbreadpixie · 04/02/2013 20:19

This is something only you can decide. Obviously. But if you look at the statistics 1 in 332 chance of having a baby with DS is less likely than the 1 in 100 chance of amnio causing miscarriage.

It is so hard though. DH and I are now questioning whether to even have the nuchal scan as we're not even sure we would want the decision in our hands. DH is disabled so that would add a whole new layer to the already impossibly tough decision.

My midwife said to me it all depends on what you'd do with the results. If you need to know, you need to know.

Sorry I'm not sure I've been any help there. Just wanted to offer some support
X

13Iggis · 04/02/2013 21:46

I have heard of people paying privately to have much more detailed scans (FMU rings a bell, is that London?) that might give you a better assessment of your risk.
It is very hard. Having had mcs I wouldn't have an amnio. There are quite a few disabled children in my extended family, but none of them have conditions that would be found in an amnio test (eg autism).

NewChoos · 04/02/2013 21:50

My understanding is that it's difficult to put an actual risk % from the amnio procedure as some of these pregnancies would have ended in loss regardless.
Lower risks are associated with very experienced physicians.
I do hope all work out for you whatever you decide.
Thank you missingthemincepies I didn't meant to sound harsh in my post, but I feel people can be very judgemental but it's individual choice and you must do what is right for your family.

NewChoos · 04/02/2013 21:54

To add, I agree, it's about what you would do with the information. I spoke to a fetal medicine expert exactly to get his opinion re if I should have an amnio, he asked what would be worse, risk of miscarriage or having a baby with what could be complex health needs.