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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

I had an amnio today and am now preparing myself for possibly having to make a terrible decision

130 replies

emkana · 06/02/2006 21:47

I had a repeat scan today. There were three soft markers for potential chromosomal abnormalities.

A month ago I would have been convinced that I would never have an amnio because I would never have a termination.
But when the results of the scan were presented to us today dh and I both knew instantly that we needed certainty, so the amnio was done there and then.
We also both feel that we would want to terminate if there is a chromosomal abnormality.
Am now reading past MN threads on termination of pregnancies with Down's, and am feeling that I will be condemned for wanting to terminate. Majority MN view seems to be that Downs' is no reason to terminate.
But my "gut feeling" is that this is what I would have to do.
Please someone talk to me, this is the hardest time

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emkana · 06/02/2006 22:36

I just want to dig a hole somewhere and lie in it, just dread dread dread having to talk to people - don't want to answer any questions in RL, will probably burst into tears every two seconds

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Latz · 06/02/2006 22:38

Hey - please don't - we are here for you!

emkana · 06/02/2006 22:43

The added worry is this: there are three soft markers, therefore we had the amnio.
But even if there is no chromosomal abnormality, there is one finding which still leaves a cause for concern and a risk of developmental problems, where nobody can tell you how severe the problem will be (even though the prognosis is mostly favourable, as I understand it)
So even if results from amnio are = no abnormalities there's still no reason to crack open the champagne T
This one measurement is the so called ventricles in the brain - the astonishing thing was that the sonographer measurer 14 mm (upper limit is 10 mm) but when the consultant had a look he measurer about four times and the highest measurement he got was 11 mm. So no certainty there as to the severity of the problem
(Sorry if all this a bit technical, it's hard to get your head around)

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JanH · 06/02/2006 22:44

I have been there too, emkana - no soft markers, this was 13 years ago and I was over 40 so amnio was a foregone unless you definitely would not terminate. We had 3 children then and the iffiness of how serious a chromosomal abnormality might be meant that I felt we couldn't risk it.

Waiting for the result felt like 6 months and the all-clear like a death row reprieve and I'm sorry, TC and eidsvold and Dingle and everybody else with children with Down's or other chromosomal abnormalities, I would still do the same.

emkana · 06/02/2006 22:45

I have to say I am very much influenced by looking at my dd's and thinking about the impact it would have on their lives, esp. in adulthood when me and dh might not be around anymore

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expatinscotland · 06/02/2006 22:47

Em, I'm SO sorry you're having to go through this!

Blu · 06/02/2006 22:47

Emkana - I am so sorry you are going through this.

Can I ask what the soft markers are?

I know that nothing takes away worry and doubt once it is there to worry about, but 'soft markers' really only means 'slight unproven link'. DS had 2 soft markers.....

Ans whatever happens, you won't face condemnation from me.

emkana · 06/02/2006 22:49

The soft markers are:

enlarged ventricles of the brain - with a question mark over how much enlarged they actually are

renal dilatation (is that what it's called? It's the kidneys anyway)

short femur (measuring 9 days too short)

Thank you all so much for your messages of support,
you have no idea how much it means to me.

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mummytosteven · 06/02/2006 22:51

So sorry you are going through this. I have absolutely no idea what I would do in your situation, so couldn't presume to judge.

dexter · 06/02/2006 22:52

Emkana, I'm sending my heartfelt good wishes to you and all I can say is that I hope you manage to pick your way through this horrible situation you find yourself in. You have to take it easy for a couple of days post amnio so I would use the time to put your feet up, literally - you will have time to think, and I'm sure you'll think of nothing else.

No-one would condemn you for whatever decision you make. I did go through an amnio too and have always been absolutely convinced I could never have a termination, but when I thought about it I realised that I probably would be able to. It's not until you are faced with the reality that you really know how you feel I guess.

Two things occurred to me; one was that a friend said to me she loved her son so much - if he had any disability it would only make her love him more fiercely. But I balanced this against the possibility that with some disabilities, you are looking at ending your days being a full time mum.There's inbuilt in us I think this sort of 'timetable' that one day, though we'll always be a parent, they'll be off doing their own thing. It's such a huge step to accept this might never happen, I found it hard to believe I could cope.

Don't know if my ramblings mean anything, just wanted to support really. Please let us know how you are getting on, I'll be thinking of you.

Flossam · 06/02/2006 22:54

I hope you get the results this week and I hope so much they are good results and you won't be faced with this impossible decision. And if you are I wish you and your DH all the strength in the world.

emkana · 06/02/2006 23:04

Thanks again.
Should really go to bed now, feel totally drained.
Will be back in the morning though!

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JenJam · 06/02/2006 23:05

Em, we were in a similar situation last year. the waiting is truly awful. just read your post to my partner.
Push the hospital to give you the results at the earliest
We both feel for you.

tamum · 06/02/2006 23:09

Try to sleep well, emkana. I have to say that with the ventricle measurement so marginal I wouldn't assume that a normal chromosome outcome necessarily means months/years of worry. You will be able to have more scans, and more accurate measurements, and maybe it will all even out. I am so sorry you are going through all this.
xxx

Marina · 06/02/2006 23:15

Emkana, I am so sorry you have this draining wait...and probably an agonising decision ahead of you. I hope this thread has helped a little tonight - and reassured you that whatever you decide, support will be here for you.
When my baby died in utero at 21 weeks, some of the most shrewd and loving support I got off Mumsnet was from a woman who had opted for termination following a dx of Down Syndrome and probable severe heart defects in her unborn daughter. I'm telling you this because I hope it illustrates how Mners can give and receive support no matter how very different their circumstances.
Wishing you lots of luck and sending you lots of love at this difficult time.

JenJam · 06/02/2006 23:48

Em the other thing to say is we were given two different nuchal measurements, initally one from the nhs sonographer(very unfavourable)followed by one from a private consultant (very favourable). We were given a 1:2 risk of DS by the NHS from our Quadruple test results and a 1:7000 odd via the combined test by the private consultant. Like you I we had to investigate further by having an amnio because we really didn't know anything from these two tests. We wished we didn't have either

What I'm trying to say is that one of the nuchal measurements was, not a little bit, but massively wrong. Remember there seems to be a discrepancy on the soft markers detected in your scan

At the moment you are tortured by a possibility, a 'what if'. The sooner you have the information the better. You may not need to make this difficult decision. From the amnio you will get a clear answer.

Thankfully we didn't have to decide (but if it is any help to you we did make a decision while we were waiting for the amnio results, and then we switched back and forth several times - at different times and not in tandem. It is an awful situation to be in and an awful decision to have to make. Noone should ever judge you). I swung wildly from wanting to be different, and wanting my child whatever he or she to wanting him/her to go away, to start over and have another chance at having an average 'normal' family

Take good care of yourself, make sure you rest. Chase up the results from the hospital. we got our results a day earlier than we were expected by calling the hospital and hassling them

I will be thinking of you this week.
J

soapbox · 06/02/2006 23:59

Oh Emkana - how awful for you

I think you need to talk to Thomcat, why don't you CAT her and chat off board. Thomcat wrote some searingly honest posts on this topic a few months ago. I think they were wonderfully informed because, as you know she has a lovely little girl with DS.

I hope you manage to find some peace in amongst the angst of the next few days. I have no doubt whatsoever, that whatever the outcome and whatever your decision, should you need to take one, then MN will be here supporting you all the way

Look after yourself and your DH/DP!

emkana · 07/02/2006 08:16

Didn't sleep much, feeling awful and all these thoughts going round and round in my head.

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sobernow · 07/02/2006 08:28

This reply has been deleted

Message withdrawn at poster's request.

Clary · 07/02/2006 08:29

emkana
No-one on here will judge you. Yes, there are posters with very positive experiences of having children with Down?s, but I?m sure even they would agree you must make your own decision. You are the one who will have to raise your child, it is your decision, and you will get all the support you need I am sure. I really hope you get the result you want.
Cxx

hub2dee · 07/02/2006 08:42

emk - if you search 'ventricles' there are several threads / posts which discuss results from people whose scans showed 'high end' or upper limit of normal etc.

It is fairly common for different sonographers to get different results / measurements... the subject is moving, and also their experience / skill can differ; different machines also may have different resolution capabilities.

Hope all works out for your family.

hoxtonchick · 07/02/2006 09:00

i will be thinking of you this week emkana. i hope the wait for the results isn't too hard.

getbakainyourjimjams · 07/02/2006 09:12

emkana- do you have access to counselling? It's such a difficult decision, especially if you have no experience of disability or termination. It's like choosing between 2 unknown awful situations. When I was pregant with ds3 we (dh and I) talked for the first time really about what we would do if markers for DS came back positive (previous pregnancies we'd thought we would go ahead). I insisted on the conversation as already having a child with a severe disability I thought it needed to be thought through.

Anyway when making difficut decisions I'm a great believer in taking the 2 choices and looking at them equally and then you kind of get a feeling for whichever decision is right for you. As a process of doing that I came to the decision that although I could terminate early (pre- feeling movement), I just couldn't once I had felt the movement and for me going through a late termination would be worse than actually dealing with a disability. Maybe I was seeking security in the known (ie the disability- which I knew I could deal with whereas I wasn't sure I could deal with the reality of a losing a well established pregnancy).

Anyway point of that ramble is not to say what I think you should do, but just that as an exercise (considering the 2 worst scenaraios and imagining living with and through both of them) it was useful for me as it made my decision very clear. I knewthat there was actually only one scenario that I could live with, so hey presto that was the decision, and once I'd made the decision I kind of relaxed (which I think is always a sign that its the right one).

I think it is important to try and come to a decision before you get the results, because you need to make the right decision for you (whatever it is), and once you get the results if they are positive it is often assumed that you will terminate (which is fine if you want to, and probably helpful, but can be very difficult if you don't want to or are undecided). Eidsvold found out that her dd was very likely to have DS during her pregnancy, so if you wanted to talk to someone who made that decision she's the one for you.

I would also have a think about what you will do in the maybes. I had a friend who went through similar, and when the results came back her ds did have a chromosome abnormality but saomething that was unlikely to cause any major problems, except potentially with fertility (last I heard he was a normally developing 4 year old). Obviously that case is fairly clear cut, but there are other shades of grey such as mosaics where the effect on the child can be very very hard to predict. I think its worth talking with your dh about your feelings there before the results because you may suddenly be landed with a situation you haven't considered and asked to make a decision in a very short time.

I hope that doesn;t sound a bit "do this and it'll be OK you'll know" as I know its not that simple, but I think when you are panicking it is very hard to clear your mind enough to know what's right for you.

emkana · 07/02/2006 09:21

I think at the moment my main problem is really that I feel so much guilt - I was always so convinced I wouldn't have a termination in this situation, was even telling some people last week how I wouldn't, but when it suddenly became a real possibility I felt totally different all of a sudden. That makes me feel so guilty, because it's not what I before felt to be morally right. But now when faced with the possibility I don't feel that I could go through with it, I have such fear that I couldn't bond with the baby, that I would feel resentment... that I would have more negative feelings than positive towards him.
This makes me feel even more guilty because I've read many of the positive posts about living with a child with Down's, but I still feel I couldn't do it.

There are so many things I cling on to at the moment to give me hope - my triple test put me down as low risk, all the markers they found were soft markers, and they were all borderline...
but there were three of them, so I feel I should expect the worst.

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hub2dee · 07/02/2006 09:26

It's odd, isn't it... in a situation our preconceived ideas take a real pounding sometimes, hey.

FWIW - I think you are very right to cling to the information as you describe it. Great triple test result, short legs, big ventricles, not sure about the kidneys... what else can you do ? Just a waiting game till results are available.

Thinking about you, because in the same situation I would undoubtedly be posting something similarly confused !

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