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Not sure how much more I can take ...... anyone who knows about amnio or has had one please come and tell me about it

(70 Posts)
mosschops30 Tue 12-May-09 11:15:45

So on top of everything else I have going on, the screening MW from the NHS phones me this morning, and reminds me why I should actually be someewhere there are no phones and no one can get to me sad

Quick background, had good NF scan (2.3mm), my background risk (age 33) was 1:353, this NF took risk down to 1:613, then bloods took it back up to 1:301. The cut off for them offering amnio at Bupa was 1:300 so we were just outside the boundary of being considered high risk.
The consultant recommended we had a marker scan at 18weeks (another £160) which would give us a clearer indication of whether to have an amnio.

Screening MW rang today as I had left her a msg, she said that if I was 1:251 on NHS results I would have just recieved a letter saying I was low risk (their cut off being 1:250 but its a different test). She also said the marker scan was not evidence based and therefore dubious as to whether it really indicates anything. She also said we could have an amnio on the NHS if we wanted.

So now am torally confused, dh thinks we should just have the amnio, but I dont know if I can put what is more than likely a healthy baby at risk.

Any advice would be great please, because I just cant deal with any of this right now sad

Owlingate Tue 12-May-09 11:26:52

Ok. Just a quick question - it sounds like your Nuchal fold (which is the most important / definitive bit) is fine. But your bloods made the risk ever so slightly higher (actully much the same as your original risk based on age if you hadn't had any of these tests). Are you over or under weight? Have you had any bleeding in this pregnancy? Both of these can affect the blood results. In any case - your risk is very very low and in most NHS areas NOT a 'screen positive' result.

Also - 18 week marker scan is pretty much the anomaly scan they do on NHS between 18-20 weeks looking for soft markers e.g. nasal bone, echogenic bowel, heart etc. So not worth paying for IMO. Remind me - have they seen a nasal bone on your early scan?

Just as an aside - my nuchal in 2nd preg was 3.5mm and 1:27 risk going to 1:140 with bloods - so screen positive - and baby had no chromosomal abnormalities whatsoever. (I refused amnio and CVS because risk of MC was too high).

Finally - it seems to me that your risk of MC from amnio is much much higher than your risk of this baby having any chromosomal abnormalities. And your risk of baby having chromosomal abnormalities seems very very low to me. What would you do if the result of an amnio was positive? Sorry to put it so bluntly, but this is something you need to think about before having an amnio. IMO here is no point having it and risking your pregnancy if you wouldn't terminate.

NB I am biased having lost a baby in 2nd trimester (despite no CVS/amnios) I would do anything to avoid it happening again.

sarah293 Tue 12-May-09 11:27:47

Message withdrawn

mosschops30 Tue 12-May-09 11:44:33

Owlingate - Im maybe a bit underweight at start of pg, think my BMI at 14 wks is now 20 (was about 18). No bleeding in this pregnancy.
Dont know anything about the nasal bone.
According to my private consultant the marker scan is different to the anomaly scan, as its longer and takes in more factors (that apparently they dont have time to do on the NHS).

Riven - unfortunately/fortunately the consultants personal risk of mc at amnio is 1:300 so same as my risk for DS, which doesnt help with the decision.

I honestly dont know what I would do with a +ve result. DH would want me to terminate no question, there is no room for manouvre on that. So the decision lies with me, would I continue and lose my marriage (therefore my living children lose a full time parent) or go against what I believe in and terminate?
I also think that if I had no children, the decision would be easier, but having children already, when anything happenes to me or dh it would be their responsibility to look after their sibling.

sarah293 Tue 12-May-09 11:51:59

Message withdrawn

Owlingate Tue 12-May-09 11:58:28

I had a 'special' early marker scan courtesy of the NHS and it really wasn't that much different than the normal 20 week scan actually.

Is your consultant from the foetal medicine centre at Kings? They have a very good rep for looking at markers other than the NHS e.g. the nasal bone, absence of which at a certain stage is very significant for Downs at least. It may be worth getting in touch with them if you haven't already - I have heard of people's likelihood going from 1:200 to 1:1600 after their scans / tests for example.

At the end of the day your test is not actually screen positive for chromosomal abnormalities is it? If it was, they would've offered you the CVS/ amnio / cardiac anomoly scan / early anomaly scan?

It's horrible but the truth is that - you are statistically much more likely to have a baby born with other probs e.g. CP caused by a lack of oxygen at birth or a late miscarriage or stillbirth or prem birth than you are to have a baby with Down's syndrome. This is just one of the few disabilities the NHS has a chance of identifying before birth And at any point in any of your existing children's lives they may have to look after their siblings for one reason or another. I genuinely think you are worrying about a very very small risk of a child having an eminently survivable disability with a good chance of leading a fulfilling life.

Galava Tue 12-May-09 11:58:36

I had an amnio at age 38.

It was painless and over very quickly.

It was a thing I needed to do for myself.

mosschops30 Tue 12-May-09 11:58:38

no riven it would probably not survive.
I think every person has qualities, we dont like everything in everyone and we have two beautiful children and enjoy a good life, I dont want to get into a debate about peoples opinions of my dh
FWIW no i dont think he would leave if we had a child with a disability. He's a practical man who thinks that if you can test for it, then you should and thats that. Whatever else happens he would deal with I think, although who knows, I dont think anyone knows how they would deal with anything until it happens

mosschops30 Tue 12-May-09 11:59:05

Galava, would you mind talking to me about it?

Galava Tue 12-May-09 12:00:38

Yes, absolutely, what do you want to know ?

mosschops30 Tue 12-May-09 12:00:52

thank you owling, no my consultant is in Cardiff.
He did say that the marker scan would give me a swing in either direction so would take me to 1:200 maybe or 1:700 the other way, which is why he thinks it would be a good decider for me for the amnio

mosschops30 Tue 12-May-09 12:02:16

What made you decide to have it (did you have a high risk blood result?)
Was it really painless?
How long does it take?
Did you get to choose your consultant?
How long did you wait for results?

Thank you smile

Owlingate Tue 12-May-09 12:05:24

I have to say if you are wanting an amnio it is probably worth getting the personal miscarriage statistics from amnio from a couple of other consultants in your area. Find out how many amnios they have performed too. I have heard of docs in some hosps having numbers like 1:1000 which sounds much better to me.

Owlingate Tue 12-May-09 12:06:39

Oh yeah and if the 'problem' with your blood is that your PAPP-A was slightly on the low side it could definitely be because your BMI was low.

escondida Tue 12-May-09 12:12:37

I think you should have the amnio, Mosschops.
Because the uncertainty is driving you crazy, which is no good for the baby (and you) either.
You have tried for a week or more now to come to terms with the uncertainty, and it's not going to happen, is it?

Also, your DH has half the vote, and he is firm on his preferences. If he knew he would never terminate then I would say you shouldn't have amnio, but his vote goes the other way.

Yes the amnio could cause m/c. But (being brutally frank) you could lose the baby for completely different reasons (late stillbirth, whatever). So nothing is certain -- sadly.

If the amnio comes back with a problem, you will deal with that then. You can't plan for everything.

I had amnio when my odds were 1/400 from just nuchal fold. It hurt more than I expected at the time, and I was achy afterwards (those things are normal, I just need to warn you). The child turned out fine, though -- now nearly 15 months... and howling because I am not letting him turn the 'puter off .

Good luck.

escondida Tue 12-May-09 12:15:28

I went to FMC in London for my amnio, to try to get lowest m/c risk. Pricey, though.

Galava Tue 12-May-09 12:21:44

I guess this was an unplanned pregnancy and I was 38 years old at the time.

Quite early on DH was insistent that I had as much testing as possible. He was worried for all kinds of reasons. Funnily enough I was very blase about this pregnancy... I kind of knew everything would be OK.

However, we are in a very happy, secure relationship and I was prepared to undergo this test for him.

So, because I had decided to have this test at 16 weeks my midwife said it was silly to have the earlier blood tests as they could throw up some spurious results... and if I was definitely having the amnio then .. no probs.

Yes it really was painless. Apart from the popping kind of feeling when the needle went in. The needle is quite long (apparently, but I choose not to look).

The room was dimmed, (not sure why as I would have thought they needed to see as much as possible) There was a large monitor above me that relayed the procedure. Again, I choose not to look being a bit squeemish !

DH was not with me, and the midwife offered to hold my hand. I refused. I was relaxed about the whole thing.

For me it genuinely took less than 5 minutes. They take about 5 ml of the amniotic fluid. I was told it only takes longer if the baby is in an awkward position as they need to avoid the needle being too near to them.

So I just lay on my back for a few more minutes and that was that.

I was told to take it easy for the next 24 hours or so, which I did. I honestly felt 100%.

I didnt choose my consultant. But I had checked the stats on the local hospital and they were fine.

Preliminary results were in within 3 days. I was warned that only I could phone in, and that there would be a delay, and this was nothing to worry about, it would often take the receptionist a few minutes to check and double check the results.

And another plus ... if you wanted to know they could 100% confirm the sex.

So for me it was the right thing to do.

Hope this helps you in your decision.

mosschops30 Tue 12-May-09 12:40:16

thank you both for your experiences with the amnio.
Escondida, what you say makes sense. I think the seed of doubt and anxiety has been sown and that I need the amnio.
Esdcondida, do you mind me asking why you decided to go ahead with amnio when your risk was 1:400. Not questioning your decision, but I am trying to justify to myself the risk I may be putting my baby at by having the amnio.

dh has just sent me a txt saying hes left a msg for the consultant, he said to me 'we've paid him fucking £300 to get an idea of risk and we have no idea what that is and I want to know'
I think that dh just wants to be told, its high risk, or its low risk, and my risk at 1:301 falls into 'low' but not by much, for an intelligent person dh is really stupid sometimes and I cant seem to explain to him.

Galava Tue 12-May-09 12:47:46

Thats like my DH's viewpoint !

He needs answers in black and white. Not some sort of wishy washy inbetween vagueness.

I guess thats why they aren't designed to go through this whole pregnancy malarky and we are grin

busierbee Tue 12-May-09 13:39:45

I have not had an amnio but have had two cvs procedures and I needed to as my risk was way way higher than yours 1 in 2 and 1 in 7.

Once one embarks on this whole testing thing, it can be so hard can't it?
It sounds like your consultant has a very good track record and the positives will be

That you and your husband will know for sure the baby does not have one of the chromosomal disorders that are identifiable

That you can relax bit more for rest of pregnancy
That if there was a chromosomal issue, you and he could decide together what was the best decision.

This is part of family and married life - to deal with these things together - and it sounds to me like you are doing so very very well.
The soft markers for DS include looking at the nasal bone or absence of.
If you were able to get to the Fetal Medicine Centre in Harley St - they have a fabulous world wide reputation - you would get a thorough scan. Many women have had odds like yours, gone to FMC and then had much much reduced odds and avoided amnio. Or indeed had am amnio with Prof Nicloaides who is fab
Best of luck Mosschops - it all sounds like the normal worry we all have - in late thirties and forties the odds just do go up and mostly is fine.

joanneg20 Tue 12-May-09 13:41:54

Mosschops - I was in a very similar situation to you, although it was a CVS I ended up having, not an amnio.

At my 12 week scan/bloods, my risk was very very low based on scan/NF measurements, but bloods made my risk much higher, particularly the low papp-a, which brought my risk of Trisomy 13 up to about 1 in 250. Personally this risk was too high for me to deal with, so I went on to have the CVS, which was momentarily painful, but basically fine. And I got the result within 2 days, and all was fine - and we also found out the sex.

Personally, I chose to have the CVS at that point because, had my baby had Trisomy 13, I would have terminated the pregnancy (though Trisomy 13 is a different matter from Downs Syndrome) and I wouldn't have wanted to wait until later in the pregnancy to find out something was wrong, because a termination at that point would have been a lot more serious. That was my main reason for having the CVS straight away rather than waiting for further scans/tests. Had the risk figures been given to me later in the pregnancy - i.e. when it was too late for an 'early' termination anyway - then I may have chosen to wait it out and not risk miscarriage. But I wasn't clear from your post how many weeks pg you are? Sorry if I missed that info.

escondida Tue 12-May-09 14:18:01

I opted for amnio because I wanted certainty about chromosone defects or cystic fibrosis, and you don't get that with risk measures.
Also, both DH and I were fairly certain that we would want to terminate for almost any chromosone defect -- for lots and lots of reasons. I am very relieved that we didn't have to to make that decision, though.

I am so sorry to hear you're going thru this, Mosschops.

mamamila Tue 12-May-09 14:40:37

hi, i haven't read the other replies just the OP so apologies if i'm repeating but just wanted to offer my experience
I had amnio, after triple blood test gave me 1:10 risk for downs, i was totally petrified of the test and scared silly about the risk of miscarriage etc
talked to the consultant about amnio procedure and felt very reassured, she'd had no mc's in 5 years. so i went ahead and it was absolutely fine. i'm a huge baby re: pain, blood tests etc hypersensitive. but the amnio didn't hurt at all, i was still nervous after and took to my bed for 48hrs but more to emphasise to dh that i wouldn't be available for any childcare or household duties. we actually had a negative result within 24hrs.
so i would say don't be frightened of the amnio but 1:250 is actually terrific odds on there being nothing wrong with the baby. the way they deduce the risk ratio seems completely random and whilst it's very scary the majority of people given even very high ratios 1:3 etc have a good chance of all being well and the amnio can settle that quickly

GooseyLoosey Tue 12-May-09 14:51:59

Hi Mosschops. I had an amnio at 34. My risk was much higher than yours (about 1:20) so the decision to go ahead was a fairly easy one for me to make.

As I recall, I had to wait until 19 weeks which was quite difficult as I was trying not to get too emotionally attached to the pregnancy.

During the wait it became clear to me that whilst termination had seemed like the obvious choice at first if the amnio was positive, niether dh nor I found it the easy choice we expected once we actually sat down and thought about it.

As Escondida said, the amnio is fairly painless (although the needle looks like a harpoon). The sensation is odd and of course you have to keep fairly still.

I would have said I was in and out in 15 minutes. I think we waited about 5 days for the results (which were negative). From my persepctive, the amnio procedure was not stressful at all.

Good luck with your decision.

mosschops30 Tue 12-May-09 15:56:27

wow lots of people on here with different risk ratios given, seems though that theres no easy choice wherever you are on the spectrum.

Is the FMC the best in the country then? What are their miscarriage rates does anyone know? I know my private consultant is 1:300 but not sure generally what it is at our local hosp.
What sort of price would I be looking at for an amnio at FMC

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