amniocentesis

[Melly]

Hello everyone, hoping that some of you might be able to offer some advice or share your experiences on amnio. I am due to have one tomorrow and will be 16 and a bit weeks. I had an amnio when I was expecting my dd and thankfully all was well. This time round I seem to be even more scared, even though I know what to expect etc. Apart from the obvious worrying about the result, the thing that is worrying me is coping with my dd after the procedure. I've made arrangements for her to stay with relatives tomorrow and over night and will collect her on Friday pm which should give me a good chance to rest as they advise you to do. I'm wondering how long you are at risk after the procedure? DD is toddling now but still has to be picked up, carried up the stairs, lifted into her cot etc etc. Is there anything else I can do to minimise the risks? I am also getting myself into a complete state worrying about the result, which I know I have no control over, I was 37 when I conceived and am 38 now. Would be really grateful to hear from anyone.

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Robinw I think with respect you may well be the only one offended by this and personally I am at a loss as to understand anything at all which has been said by all the many contributors so far which could have caused offence.
Rhubarb talked very lovingly of her nephew who has downs and her brother who has severe learning difficulties.She went into some detail about the difficulties as well as the joys for the families involved so I presume you are not referring to her view as being "rose tinted".
You mentioned a downs person whom you had never met being born with a head but virtually no body(anyone else find this difficult to believe?) who spent most of their life on a bean bag.
I wonder whose anecdote regards downs syndrome is generally more likely to cause offence?

Robinw, I found the tone of the comments irritating rather than insulting as they imply that one is uncaring or unthoughtful if one chooses not to knowingly have a child with chromasomal abnormalities. I just coulnd't be bothered to comment as like the GF debates, no one is actually interested in changing their minds, so it's kind of pointless.
My understanding is that the health of your eggs was determined by the care your mother took when she was pregnant with you. Also, I think I remember that having children early reduces your risk of breast cancer...something to do with hormones and breastfeeding? dm2 help me out here...

SofiaAmes, I certainly did not intend to imply that anyone who terminates a pregnancy because of abnormalities was uncaring, as I stated in my last post. It's just nice to hear both sides of an argument sometimes, not just bury our head in the sand and pretend that everyone agrees with us.

As for RobinW, well you are as entitled to your views as I am to mine. I have apologised once to you already and am certainly in no mood to do so again. You seem to think it is fine to vocalise your opinions, even personalising them, but it is not right for others to do so? However I knew I would come across some objections when I posted my original point. I thought I was treading carefully and doing everything in my power not to upset anyone, whilst still telling people of my own experiences.
As for your description of a child with Downs, that's just ridiculous and highlights the kind of prejudice and ignorance I am trying to fight against. A person who has virtually no body does not suffer from Downs Syndrome as even in its severest forms, it never handicaps anyone that much.

But to save this thread from becoming a battleground, I will retire and let the more genial conversations continue. I feel I have apologised enough for offences (or irritants) I may have caused, if this isn't enough then I don't know what is. Thanks for the support.

Regarding the late fertility question, I read somewhere that many women have a late surge in their fertility anyway in their 40's, and this is known as "the final fling of the ovary"!

As for the rest of this discussion, I personally did not find it offensive, but a frank exchange of views on a very emotive topic. I speak as someone who has a 18-month old special needs daughter, who I would not be without for the world. We had the nuchal scan done at 11 weeks, which showed a risk factor of about 1 in 2500 (I was 34 at the time), this was considered low risk and so no more tests were done. We're now awaiting results of blood tests to check for suspected chromosomal or DNA abnormalities.

Our dd is incredibly lovable and happy, however, the range of disabilities a child can have is so vast that it just isn't possible to generalise on whether special needs children are a joy to raise or not. The decision to terminate or not is made doubly difficult by not knowing what the future holds. However, we never know what the future holds anyway. For instance, would the mother of Myra Hindley have chosen to terminate her pg if she had known what the future would bring?? Life can throw so many things at us.

Caroline, thank you so much for your post, I am sorry that the tests you had done didn't in the end give you the full amount of information you probably needed.

I am sure that if we had been in your situation we would - inevitably - have bitten the bullet and got on with life and emphasised, as you have, the positive aspects of life with a less-than-normal child. Obviously once such a child has arrived it is much more difficult, if not impossible, to shut it out. Do you have any other children? Do you plan to have any more?

Cadi's point that

had a big impact on me.

I am now past having another baby so the argument is academic for me but Cadi's point is a good one and an argument I had not considered before. I had, previously, tended to feel that while abortion, when necessary, should be available to everybody (because to force anybody to go through 9 months of pregnancy and then give up the child for adoption is just barbaric) I had always thought that a medical problem would take priority over a social one.

I still maintain though that somebody else's experience, and arguments, cannot help anybody else. I can't even think that "in an ideal world" every less-than-normal child would still be born and then be given to a family who would cherish it. Most of us (including a very Christian friend of mine who has a Downs sister, now over 40, who the family find very hard to cope with) would prefer not to have to make that choice.

I have been thinking about this later fertility theory and I suppose that theoretically a woman who was still fertile at 48, say, who got pregnant at 40, might have 'younger' eggs than a woman who got pregnant at 40 but was infertile by 41 - the latter's eggs would be much nearer the end of their natural lifespan. Deterioration happens sooner in some women than others - hence variations in the age of menopause - some women have a menopause in their 20s or even earlier. This can be predicted using quite complex private tests. Though most of us won't know in advance when our menopause will be so we won't know where we are in our 'fertility lifespan' - so the information won't be of much use in individual cases. I don't think anyone has studied this, though I think it would be an interesting study!

Thanks dm2 for "the science bit". What I definitely heard was that some women are less likely to miscarry, and more likely to conceive, even late in life. This was how "late fertility" was defined. The lower miscarriage rate was cited as possible evidence of better "quality" eggs, and maybe fewer of those micro-tubules falling out...? :-)

Here's a weird one, though: several people I know have had babies with chromosone/genetic faults, or twins, pretty quickly after a miscarriage. 3 of those women were only 18-29yo, so you can't pin it on age. It made me wonder if eggs tend to come in bad or funny "batches". Another absurd theory?

I first heard that we have all our eggs when we are still in the womb on a Prof. Winstone programme and it still blows my mind!!

janh referred to a statement that I made and I realised that when I posted it it was a very clinical statement, I'd like to add the emotional factors that have left me with those feelings.

My father cried with joy when we told him I was pregnant - he is not an emotional man and I have had a difficult relationship with him in the past, I was scared of what his reaction would be to my pregnancy, so when he was overjoyed it meant the world and more to me.

When our baby was found to have soft markers for Downs we decided against an amnio because we still wanted her, whatever her disability. I carried her thinking she had Downs and we told our families. When my father was told he rejected her in the womb - his rejection of her was based on stereotypes and prejudice. He thought that I shouldn't carry on with the pregnancy - his reaction was heartbreaking to me - I'm sure I'm not the only person to have experienced this

A few years later I found out that a friend of mine who had had a very wanted baby would have terminated her baby if he had Downs - I didn't say anything to her but I just couldn't understand how she went from wanting that baby so much to not wanting it if it wasn't how she wanted it to be (in the same way that my Father did).

This discussion has been a way for me to think about these issues, to try and arrive at a better understanding of how people make these choices. It is refreshing to be able to talk like this and a big thank you to the people who have supported an open discussion

Cadi, you've made some very interesting points. Your comment about people rejecting an unborn baby once they knew it would have problems made me think of a discussion group I'd been part of. They were talking about women giving birth to a baby with an unforeseen problem and said that some parents had to be allowed to grieve for the baby they thought they were having before they could start to appreciate the one they had actually got. Maybe that also has a relevance to parents coming to terms with such news while still pregnant? Having had an amnio myself I know that when you are pg there is a tremendous pressure timewise in which to make a decision and it's easy to panic.

At the end of the day, though, we can each of us only make the right decision for ourselves, hopefully when in full receipt of all the facts. At the same time I uphold totally other people's rights to make a decision that is at 180% degrees variance with mine.

That would tie in with my earlier post where I related how I had grieved for the Downs baby that I thought I was expecting and I needed time to adjust to having my non-Downs baby.

I don't remember the exact time-scales on amnios/results/decisions but I know that they are tight, it's awful to think of anyone regretting their decision because it was made under pressure but I'm sure it does happen I suppose I was more prepared to have a child with a disability than risk regretting not having her. We had talked about how we would change our lives depending on the severity of her disabilities, we had it planned out as much as we could, there was an empty feeling when it wasn't her born - I should add it didn't last for long and we had no problems bonding with our very special little girl Also the experience has been a life changing one for us as we have still made some of the changes we had planned.

Cadi, I wouldn't have been at all surprised if your father's reaction would have been completely different if his granddaughter had been born with Downs and he'd met her. I think it is very different to reject a theoretical child and to reject a little mite who is actually born and smiling at you. Personally, for me, the great joy of raising a child is watching them grow and eventually raising them to leave you and be totally independent. I think I would feel despair at the thought of having a severely disabled child who never could.

Cadi I meant to say this first time round, I was incredibly touched at your story and how you felt the loss of the Downs baby you thought you were going to have.

Cadi your point makes no sense to me. In that, why is OK to terminate a pregnancy because you are not able to cope with an unplanned baby at that time - any different to wanting to terminate a 'handicapped' child because you are unable to cope with it???

I think the issue is that someone might think that they couldn't cope with the extra care that a child might need. It is not so much that the disabled child is unwanted, but the mother might feel unable to cope. If I had been in that position, that is how I would have thought. In addition you are making a choice for all the family. I would have found it difficult to have a child with Downs syndrome, as my elder child would have had the responsibility for care after I die. I appreciate that other people have different veiws. and I respect them for that.

I have profoundly handicapped cousin, and his elder siblings had a very hard time once he was born. But I reaslise that not all cases are like this.

I believe that if you are pro-choice then you can't really quibble with people's reasons for choosing termination, even if they offend your own personal moral code.

Aloha - I think you are right that my Dad would have been different once he met his grandchild It was just so difficult handling that rejection.

Thank you Jasper - it reduces me to tears whenever I think about it, there's still a little piece of me that mourns for that baby even though she didn't exist anywhere but in tests that were wrong.

Lil - I didn't make any judgement on whether it was OK to terminate or not, I don't have any set views on termination as an issue in itself IYSWIM. I think the difference that I see is that if a baby is unplanned it was (perhaps) never wanted so the decision to not continue with the p/g somehow falls into place in my mind. When the baby is planned I find that more difficult to understand, I haven't said it's wrong but it is different in my mind - I have tried to explain why as in the story of my fathers' rejection of his much wanted grand-child when he thought she would be disabled and my friend who chose an amnio for her much wanted child. It's only my opinion/feelings - I am getting a picture of why a child goes from being wanted to being unwanted because they are 'different' but I do still think that's different from a child who is unwanted to begin with.

hmb - I take you point about it's not that the child is unwanted but is more about the parents feeling they can't cope and they worried about the pressure on the rest of the family but ultimately it does mean the child is unwanted - why else would someone have a termination?

I think for me I wouldn't feel that I was making a choice for the childs' siblings, to me I would've already made that choice when I decided to have another child, that childs' differences wouldn't bear any relation to that choice. A difficult one with respect to siblings being potentially left with the care of the child but not one we can necessarily know when the child is still in the womb as often the babys' later ability to lead an independent life wont be clear.

I agree with Bundle that when you are pro-choice you are pro-choice without exceptions but I don't think anyone here has questioned an individuals' right to choose? I know I'm not.

Cadi, having just been through a couple of awful weeks waiting to hear whether my unborn baby had a fatal syndrome I can sympathise with anyone faced with such a decision once they have the results. I certainly would have terminated if the result was positive but I've heard of women going full-term with the knowledge that their baby had this condition. that would have been completely unacceptable for me, although both routes are painful. having the 'perfect' baby is what society tells us we want and termination doesn't necessarily indicate that the individuals didn't 'want' their baby. if they didn't, then it wouldn't hurt so much once the deed is done and they mourn their loss just as keenly. Like your friend, I too would have terminated a Downs baby and wouldn't have appreciated any judgements made by friends/family on what is a very personal issue. I agree wholeheartedly with you that it's great that we can discuss this openly here, just in case we/our friends are touched by these issues, so we'd at least have some idea of how we really feel deep down.

Cadi - The more real live stories you read on mumsnet, the less I could ever judge anyone on their final actions!

Bundle - I hope you know that you do have my compassion and I'm glad that the results of the tests were good for you and baby, I hope the rest of your pregnancy will be peaceful

I'm so glad that you feel it is okay to discuss this here, I think it does touch on much of what is often left unsaid and may help someone else thinking through these decisions.

I hesitate at re-addressing the point about wanted/unwanted and wonder if this is semantics now. I hesitate again because I know this is going to sound harsh but if a woman decides that she no longer wants her baby for whatever reason how can that baby still be wanted? I'm not saying she doesn't mourn or feel the loss I do understand it's a painful decision but ultimately she does decide that she doesn't want that particular baby. I've thought hard about this and did wonder if I should write it as I don't want to hurt anyone just by pressing a point but I came to the conclusion that it is important in the context of this discussion.

I finally understood what you were saying when I related it to when I gave my oldest child up for adoption at birth. I have always said that I made that decision because although I wanted him I knew I couldn't cope but I now realise the harsh truth is that I didn't want him when I made that decision - I broke my heart when he was taken from me and I mourned for him - but I had decided I didn't want him. I was 'lucky' I had 6 weeks to change my mind and my decision was reversible - I do feel compassion for the pain of those women who mourn for the children they have chosen not to have with them.

I truly hope I haven't hurt anyone by posting here and if I have they have my honest apologies x

I have read this thread with interest over the last couple of days, I have written some of this before on another thread so some of you may have seen this.

Following IVF/ICSI I was pregnant with twins. At the 13 week scan, the scanner spent a long time on the nuchal scan of one baby, I already felt unsure about things, and immediately knew what she was checking and asked about it, anyway, she said the nuchal on its own without age/blood tests was 1/15 which is high, the other baby was 1/350 and my first baby had been even lower odds. She offered us cvs it being too early for amnio and came with us to the Harris Birthright Unit (we were at kings) There we got immediately seen by Prof Nicholades (Sorry to all you ladies with appointments getting held up) Had cvs on both babies, prof N and all the staff were v supportive and involved, and then had to wait for the results. They came back really quickly which was a huge relief, it was awful waiting but in a sense I knew what the answer was going to be. My baby was confirmed with Downs, the other did not. The lady on the phone was v supportive and we aranged to go back into HBU the next day to discuss the options.

The concern was over a twin pregnancey, there was a high chance of miscarriage and the later it happened it was extremely likely that it would cause both babies to miscarry.

Both dp and I agreed that we would have a termination, I know this seems bizarre to some people having gone through ivf to then terminate but I had already had one v stressful ivf treatment where I sufferred severe OHSS which resulted in my embreyoes being frozen, having a twin pregnancy where I miscarried naturally at 7 weeks followed by a prem baby - I could not cope in my second pregnancy with the knowledge of what could happen, of worrying throughout if I would miscarry both, of being able to cope with a 21 month child, and 2 babies, 1 with downs.

It was heartbreaking going through the termination, Prof Nicholades was v kind throughout, and the staff at HBU phoned regularly to see how I was doing and did not mind me coming in for checks/scans etc whenever I was concerned. The termination carried roughly a 1/15 change of forcing a miscarriage but the longer we went the lower the risk. As termination of one baby in a twin pregnancy is unusual there were no statistics to assess the risk.

Luckily my pregnancy continued okay and I have a wonderful dd, but each birthday is tinged with sadness as I remember the one I do not have.

I am sorry if this (v long) story offends some, but I would still make the same decision; thinking of anyone who is going through anything similar...

(((Mindy))) it is stories like yours that help me understand the extreme situations that some people find themselves in and how these decisions are reached - thank you it has helped me think about this from yet another perspective.

How heartbreaking for you to have to make that decision and after so much distress already, I'm so glad you had the support you needed from specialists and that your surviving DD is bringing you happiness

I don't think your story would offend anyone here, I think that the pepple who are fully involved in this discussion are thinking through the issues and I for one am coming to a greater understanding of how people make these heart breaking decisions - thank you for sharing your story - it is one that will stay with me x

ditto. thanks for telling us your story. There really is no black/white solution to any moral dilemma.

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Mindy - your story brought a tear to my eyes. It really brings home to me that I should be grateful for my lovely but whiney ds. I would a million times rather have him with me and moaning than not here. Thanks for your insight, it makes all the petty niggles in life rather insignificant.