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

[mosschops30]

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

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

sorry, am I being over sensitive? I havent wanted to upset anyone with this thread and whole-heartedly agree that no one can imagine what its like to be in a situation or comment on anothers choices when things like this are being dicussed.
I am really grateful to those who have shared what is a difficult subject to discuss for anyone

Elsewhere on MN ppl who spoke to Dr. Nic in person at FMC, report him estimating that his real m/c risk from amnio is about 1/700. That's pretty good, no?

Mosschops, any news from your DH, has he managed to speak to Consultant?

I really feel for you as I know what a hard decision it is to make. I'm sure you and Dh will come to the right decision for you and your family

No news from dh, I am still firmly on the fence between one minute thinking 'Im having the amnio' and the next thinking 'im not having anything anymore'

One of the things that swayed my decision to have the amnio (apart from my age) wasn't so much the risk in itself but who did it. I had the senior consultant who performed the procedure and the clinic itself had a much lower rate of miscarriage than the 1% (national?) statistic given. So might be worth checking out the rate for the clinic you'd be going to.

The amnio didn't hurt at all for me, although if you are (how can I put this politely) carrying extra weight (apart from bump) then pressing through the tissue can hurt ( I have heard from others). I am very slim so really hardly felt a thing. It is very quick and simple and it just means a bit of rest after.

You are still quite young but of course conditions such as Downs do happen at any age so to clear up any doubt the amnio is going to be the only way to know for certain. How far on are you now (apologies if you've already said, not read all the thread).

Any other questions just ask, take care.

thanks eulalia, Im 14 weeks now. My consultant has a 1:300 mc rate, which is better than the national average, although some have reported on here sopme are as high as 1:1000.
I have no idea what other consultants in the area have as risk ratios

Hi Just been reading your posts, thought you might find this useful

FMC

We thought we'd terminate if results came back otherwise. However, I knew, absolutely knew, that the results wouldn't matter because regardless, I wasn't terminating and DH would either have to be with me or bugger off.

I went ahead, knowing this deep in my heart, because I wanted as much information up front as I could get, so I could prepare as much as I could.

It seems to me that like me you are a natural worrier.

I think if you don't have the amnio the worry throughout the pregnancy will drive you mad. A lot of people on here seem to equate having amnio with thinking about terminating. I think they are separate to be honest - you may just need to know one way or the other.

The miscarriage risk from amnio is pretty low really - not that I am trying to worry you at all but there is a miscarriage risk every time you travel in a car.

Hi

I am nearly 19 weeks pregnant and found out at 17 weeks that my baby had a high risk of DS 1:26 . This was a huge shock I am 37 and this is our second child but you never think it is going to happen to you.

My partner and I had no hesitation in accepting the Amnio as we felt we needed to know. The risk of miscarriage at our hospital was 1:200, I was taken in the next day and we received our result of negative on Monday

It was the longest week of my life from the first call to receiving the results, I don't think I could have cried any more tears.

This is a very personal choice and I don't know what I would have done if my risk rate had been higher that the risk of mc - but I think I would have probably still had the test.

We have been told that we are expecting a girl and our first born was a boy - so I wonder if we were having another boy would the ratio have been so high? Who Knows.

Anyway good luck with whatever you choose I know for us it was a case of having to know and not worrying for the rest of the pregnancy.

Thinking of you all at this very difficult time.

Hi - I had amnio for both babies. My sister had a mosiac of Edwards, so I asked for it.

I don't know what I would have done had either been positive for Edwards. Down Syndrome would not have been an issue for me and would not have terminated.

the amnio itself is not painful. Uncomfortable, but not awful. Ask what the procedure is as far as results, as some hospitals only call if the results need to be discussed and some send them in the post regardless.

Oh, and one thing to keep i mind is that hospitals that regularly do amnio have a much much lower risk of miscarriage than the national average.

I am going for an amnio tomorrow. My risk is 1:75, I am 39 next Friday and I have two children already. I am currently 18 weeks.
My situation with DH is exactly the same as mosschops and doodle2U, so as much info is required as necessary.
I have a very supportive friend who had a CVS and I know she will be with me tomorrow in spirit when I go for the test.
I've spoken to ARC who have been very helpful in sorting out my thoughts and today my local midwife said that in her 19 years of practice in the area she has only known 2 miscarriages after an amnio, so although the area covers about 4 hospitals I am reassured. I will be asking tomorrow the actual consultant's/hospital's rate but deep down I feel all will be OK, whatever happens.
DH is taking Friday off so I can take to my bed all day and have the prescribed rest. I have also booked Monday off work as this is when we should get the results. There is no way I will take that call in the office!
Thank you to everyone who has posted here, as it has helped me to ask and find the answers I needed to feel better about my decision to go for the test. Your sharing is so very much appreciated.
Good luck to everyone in the same situation and my thoughts are with you at this very emotional and difficult time.
Fingers crossed!

I refused an amnio when we had an issue with DS3 so can't advise but my feeling is you are getting more upset from your DH than from the results.

Take care.

I think the advice line run by Antenatal Results and Choices Charity will tell you the miscarriage results at Fetal Medicene Centre even if the Fetal medicaine Cetre themselves won't . They told me four years ago when i was preganant with DS, but I've forgotten what they were. Their helpline is 0207631 0285. Open office hours Mon to Fri They were SO helpful to me when i had to decide whethjer or not to go for amnio. I did go, was age 38. Very easy and quick with Prof Nicolaides at Fetal Med. Centre.

Is your husband is looking for something no one can give him, a 100% everything will be A-OK? Which for him may mean no disability. He can have a 100% answer on Down's, and some other genetic conditions. As you know the 'cost' for that knowledge is the risk of loosing the baby as a result of the need to know. That cost/benefit balance is very personal. It is not that uncommon for 2 people to have a different balance, life partners or not, in my experience.

The all important question is what would you do with a baby confirmed as affected by Down's, and how would the severity matter to you? To answer that truly and deeply then both of you finding out a bit about what you are testing for is really important imo.

I only say this to give you and dh a chance to inform yourself. I make no judgement at all, as is plain to see from my posting history. I hope it is anyway. I aim to make no judgement, as being both an imperfect human and never in this situation, I have no place judging others.

Just to add also, a detailed marker scan is quite different to a routine anatomy scan. A more experienced and trained clinician looks for brain development markers and other indicators, that a senior sonographer would not look for. [All obstetric scanners are senior] They also generally use a more powerful machine. The clinician then gives a personal opinion on what they have seen and if this has implications. A routine scan is more of a checklist that, for example, certain structures are developed as expected. Were there to be an anomoly, it would be referred for a clinician detailed assesment.

The lights are dimmed during any procedure to allow the most contrast possible on the screen [someone was asking].
The needle tip is qute bright on scan, but it has to be guided through several shades of greay so resolution is important.

Hope you are ok, I guess your headis spinning with all this. You have lots of information and points of view to mull over on this thread. Maybe dh could have a look too?

By treedelivery on Thu 23-Jul-09 13:55:26
Is your husband is looking for something no one can give him, a 100% everything will be A-OK? Which for him may mean no disability. He can have a 100% answer on Down's, and some other genetic conditions. As you know the 'cost' for that knowledge is the risk of loosing the baby as a result of the need to know.

This sounds harsh and short. It isn't meant to be. Read it in a gentle questioning voice if you see what I mean, not an accusing, short voice. Shame typing cant have a tone of voice!

Anyway, good luck with your decision making.

A quick update on my situation.
I went to the hospital where we were met by the Professor in charge of Fetal Medicine and he quickly went on to reassure us that all probability would be that everything would be fine with the baby. This was SO different to the local EPAC, who basically apologised for having to see us under "such circumstances" and who indicated that the amnio would "prove it" conclusively.
We had arrived at the hospital with the idea that things did not look good for us.
The Professor was so different, so positive and optimistic. He then told us more definitely that the amnio was a choice and that we could discuss it again after the detailed scan. We were then scanned for over 30 minutes, looking at everything and he reported that the baby looked perfect and completely normal. He backed this up by saying that DS was still a possibility and that in cases where the baby has DS, 30% showed no signs during a scan of this nature.
We were then left to decide on the amnio and I got increasingly upset. I had bolstered myself up to have it by basically not thinking about it but given the choice again I couldn't go through with it and after much discussion between ourselves and the Professor and the team, it was decided I was too distressed to have the test that day anyway. DH then came to the full realisation that there was no way I would ever terminate, so the test was basically unecessary anyway.
So I continue with my pregnancy not knowing the sex or the condition of my baby and overall I am so much happier. I wouldn't wish that roller coaster on anyone but it has made me stronger, more determined to stand up for mine and the baby's rights and to make sure I am heard.
I read recently that being a "pleaser" only leaves you personally in a worse state. I had a been a pleaser by having the blood tests initially (my DH wanted the knowledge)and look where that got me - in the hospital with the prospect of an amnio. By being a pleaser I had created my own worst nightmare and to live with myself I had to get myself sorted. So deep down my convictions were stronger than my need to please and I did not proceed. So I have learnt something along the way, albeit by going through one of the most upsetting times I've ever experienced.