support thread for women who have chosen to terminate IV

[bezzyk]

Hello ladies old and new.

Here's hoping this thread brings better luck and much happiness.

Lots of love

BK xx

Oh dear Viv - now you have set the tears off again. Thank you for you words darling and you Numpty and Katie. To know Viv that you would put your head above the parapet is a very moving thing to read. I am not sure what would happen to us if we were to do so but I do know that there would be presented in the media ( if it ever got that far, which I imagine it would as they are desperate for a genuine tale of termination) an incredibly black and white debate. The parents of disabled children would be pitched against those who had made the choices we have and it would inflame and upset both parties. And for most intelligent women who have made either choice, well, they do not see it in such stark terms.
The press element would undoubtedly find the most radical pro-lifer and I do feel we are not necessarily strong enough to weather such personal attacks.
I just do not know.
I feel it inside me enormously, the written representation of our experience; but should it be public? Would it help?
I think it would animate and crystallise many issues;
the issue of combined testing
the inconsistency nationally
the issue of diagnisis
the support available post diagnosis
the provision of support for those choosing to surgically terminate
how often the provision is patchy (me, kittens)
The taboo ness of it
So many things to consider and with our ever-aging conception increasingly an issue.
Gawd blimey.
Not least of course that all words on these threads belong to MN and not us and we would need permission to use them.
Good heavens - quel task
bee

I thank goodness for this thread. I don't use wuite like most of you do, but nor am I hear as paid help.

I like it here. There are good and bad times, and some grey dreary times too. It feels real, like this is real life. Now that is ironic isn't it.

I was in Mamas and papas looking at couples doing the blessed lovely dewy eyed gazing at cots and I just felt, as lovely as it all looks, it isn't real. Those couples, who knows what demons they fight. Domestic violence? Debt? Pregnancy loss? There they are with their secret problem x being envied by the next couple, because the next couple have problem Y. They would never guess that perfect looking couple actually have problem x. We all stand so close in the line up to buy our 6-9 month tights, with shared little smiles of excitement and acknowledgement of the bumps and the babies. Yet we know nothing of each other. It's so sad really isn't it?
Here feels real, I know you all [although cannot be relied on to remember finer points with accuracy ]. That feels more real to me than a lot of my real life.

I think I was meant to live in a commune you know.

Hello everyone

I set this off unwittingly with my Jodi Picoult book and I have worried all afternoon that I upset Bee. And also - I have been acutely aware of what Bee said today, that we've all been in that horrible place but we're in different places on the journey onwards now and some of us are having an easier recovery/move forward than others at the moment. I am particularly thinking of Bee and Bezzy because we were all pregnant at the same time and I so wish we still were. What today has shown me, I think, is that despite the fact that we're all in different places, we all share a common core of experience/knowledge.

In terms of disability, reading the Jodi Picoult book - what occurs to me is that severity of a disability, as in its effect on everyday life, depends to a huge extent on the support and understanding society at large gives the individual sufferer. Perhaps as medicine advances, these disabilities will become easier to live with. I certainly hope so. And those people living with it on a daily basis, who are fighting for their rights, they need this to happen.

Katie, I know what you mean about the annoying threads saying 'I'm not going to bother with the nuchal'. I am profoundly grateful that advances in modern screening enabled me to find out that my 2 babies wouldn't make it to live so I could cut the agony short. I wish I had the peace of mind to disregard the nuchal, but for me now it is crucial. I am also grateful that there are others who have been there and understand too.

The invasion of the Daily Mail here worried me for a while. I wondered if they might move on from silly quoting of style threads and start quoting serious issues about antenatal testing and termination, out of context. I should've known that they wouldnt have sufficient depth to look this far (which is a good thing). Cos out-of-context soundbites would be worse than total ignorance of the topic.

You know what Tree? I was a Mamas and Papas worshipper when pregnant with DD. Suspect I did the misty eyed strolling round. Certainly did the whole nursery decoration thing. How far I have come...

Right, bet I post this and find the debate has moved on since I started...

I carried on thinking about this all the way home from work, and had images of you all shaking your head at me, thinking "Bloody hell Viv, you've only been here two minutes and now you're going all militantly pro-choice on us," so I'm glad you all understood what I meant.

I actually work in the media and know first hand at what utter bastards the press can be. So on this point, I totally agree with Bee - I'm sure any representation of this debate would be painted in stark black and white terms; they would undoubtedly, for instance, choose a woman who had chosen to terminate a pregnancy where the baby had a 'common' or 'familiar' disability, rather than one a baby that had an abnormality which is incompatible with life such as Patau or Edwards, as they would view that as a greater moral dilemma.

However, where I think raising awareness of this debate would be useful would be for those countless other men and women who have been through what we've been through and who haven't found havens like this. As so many of you have pointed out, advances in medicine and technology means more and more foetal problems are being detected at earlier and earlier stages of pregnancy - so I would hazard a guess that the numbers of people who are having to take decisions like ours are on the increase.

Today's posts have also made me think about how I'm going to deal with a colleague (and good friend) of mine who is returning to work in two weeks after the birth of her son who has Down's Syndrome. She doesn't yet know about Gracie, but does know I was in hospital the week before my wedding, so I'm sure she will ask questions when she returns. While I will tell her that we lost another baby (she was fantastic after my miscarriage in July), I'm unsure whether I will tell her the full story. (She was classed as low risk at her nuchal so chose not to have further tests done, so it came as a surprise when her son was born)

Anyway ladies - I better check on my bolognese...

xxx

Dearest Cantdo
Darling - you have very much not upset me darling not at all.
The upset is integral to who I am. I am upset. We are all upset. And Tree will tell you that I needed to air some of that upset here. I needed to relive it a bit, and share with you the loneliness of not being pregnant and remind myself of the journey here and how hard it has been in all sorts of ways.
The Jodie Picoult book? Forget about it; my daughter is reading it now. Ms Picoult writes controversially about things she has not experienced herself. That is brave. She is clever.
I was just reacting because I feel that we have lived it and we have fought hard for our few words here that we are allowed. And that we can not underestimate how much we would be fired at by the pro-life,disability lobby if we did write more publicly.
You have not upset me, Tree was not responsible for the backlash. We are all caught up in something enormous and univeral but also tiny and personal.
So please do not feel bad; I would hate you to sweetie. You are special to me; part of the shared journey. I care very much for you and your baby too. I am not bitter towards the women who are pregnant; I as sad that I am not and therefore find it hard to engage in the joys and congratulations on scans and good news. I care but cannot engage.
So, today. An important and honest conversaion. Important that we all understand maybe where we started.
Do not worry darling - nothing is anyone's fault.
kisses
Bee

Yes - we have all been thinking today.
Here is a tiny confession - when I read that your colleague is returning to work having had a baby with DS, well a voice in my head thought 'I wish I had not had the test. I wish I had not been given the choice'.
But I did and we did.
Viv - the media cannot at all be trusted to navigate arond the complexities of the issue.
Well maybe G2 or the Family section of the Saturday Guardian- but it would need to be a whole edition.
You are right; there would be artificial divisions activated between fatal and non-fatal, between DS with heart defects and DS without.
In the end, we are responding to each other's loss. That is what matters.
Take it easy up there Viv- you are newly bereft and it is early days. You are doing very well I would say.

Viv - I know just what you mean re frantic googling. I was the same for Patau's. There was one website that was very pro-life and I'm sure it would be a great support for women who feel pressure to end the pregnancy but don't want to - reading the posts there were several couples who felt unsupported by hospital staff etc. But it was hard to find out what the truth would be for our particular combination of abnormalities - so little is known about the condition because of it's severity. DH wanted to ban me from going to that website because he knew how much pressure I felt about making a decision and how much I cried. Perhaps with other circumstances I might have seen the pregnancy through - though as it turned out I didn't have to terminate as her condition was indeed so severe, she died before 16wks.

So I really do think most people look at all the options and really do agonise about making this decision; and that is what makes it more sad that having made the decision some people might assume it is because of some kind of selfishness.

But as Bee rightly points out, the media would definitely polarise the debate because that would make good TV/radio/article. Sad but true.

However one thing I did find moving was when looking for ideas for Iola's funeral, someone at church had a book with a service in it for a pregnancy that had been ended (ie not miscarriage). Perhaps Bee, working with Justa, you could use your words to help others who find themselves in this difficult situation find some peace and resolution when they finally say fare-thee-well to their would-have-been child?

Ha - was just going to post and say you must not feel bad Cant, as you have no need to. Bee has got there first.

These feelings are here all the time, they ebb and flow. It is the way of grief and trauma. We let it happen, safe that if knowledge that here someone will remember feeling the same, or may feel the same that day.

Btw, I meant dreary as in the dreary sad days. Not as in we are dreary boring! Never boring.

I also suspect that Bee may be very very acomplished in all aspects of english and may in fact be a pedant. My spelling and grammar have deteriorated since. Nerves.

Can't - me too, in M&P with dd1. Everything had to be cream.

Numpty- that is a touching idea- and I think Justa would be the one for it. I am somehow too 'real' and not poetic enough.
Also - would be good maybe would it to have an alternative to ARC? That is 'live' - ARC is not and there would always be someone 'on' almost.
I do not know what that would look like.
I was so lost in those early hours/days after diagnosis. It would not be pro-termination, far from it, but pro- choice yes.

I have x posted with x posts, and feel dizzy.

Cheeky Tree- me not a pendant! Me a teacher of reading and writing so am very exacting of self. None of my children can spell; maybe they feel like you Tree.
The other day my 12 year old spelt the word 'supposed' like this 'so post'.
And re feeling bad? We have enough bad days as it is Cantdo- I would never want you to feel worse. Or worser.

I guess the reason ARC isnt live is to avoid polarized hateful debate.... but you are right, Bee, it would be good to have a live space.

The other thing noone tells you is that there are so many different levels of severity for different diagnosed syndromes. Turners... my baby couldnt have made it. But some women do live with it and it can be very mild, depending on whether it's mosaic, or full, not sure on the terminology here but there is a very wide spectrum, from cannot survive in utero to leading a full life. DS, there are heart problems and worse heart problems and maybe no problems (I don't know. I know very little about DS. And Patau and Edwards). So a space for individuals to make individual choices in their context is vitally important.

Anyway I am tired, cos I have a sleep-resisting child in the house. But wanted to say thank you for today's discussion. I feel like it brought us all together closer somehow...

I like 'so post'. So post modern.

Sometimes I wish my DS would behave like he was so post two.

But mostly I'm glad he is 2, it's a fun age.

Oh Numpty, two is just so special as an age.
I have been sorting photos a bit today and came across some of my children as toddlers. How delightful they were. And then another wave of sadness, as my husband moved out when my youngest was two, and God knows what kind of a wreck I was. Enjoy yours. Take pleasure in every bit - even the sleeplessness because, before you know it, you will be sleepless because they are out at a party.
Re Arc and being live, well of course you are right Cant, they are protecting women from the onslaught of criticism. But it is also what can be frustrating. Diagnoses seem to occur on Fridays. Everything is shut. I would love it if people could find us in those dark hours. I would feel we had achieved something vital.
I think maybe some women have found us through 'googling themselves silly'.
I hope so.
Bee xxxx

Hi everyone, not sure whether any of you have read "A Time to Decide a Time to Heal: For Parents Making Difficult Decisions About Babies They Love" It's a book written for parents who have made the decision to terminate due to an abnormality. I bought it from Amazon when my DH and I were faced with this decision. It is mostly made up of advise and experiences written by parents who have been through this same awful, hearbreaking experience. I terminated due to Edward's sydrome, three weeks ago today, and I think I cried the whole way through reading the book.

I have to agree that I often worry that I'm being judged and it is my biggest fear following my termination. I worry that people are judging what was the most difficult decision I've ever made in my life. I think until you have been through an experience in your life it is all too easy to see things in black and white.

I think we were probably all a little guilty of naively having the scans and tests and never really thinking that we might be that 1 in a 100 or 1 in a 1000. I know I certainly was.

I think what scares me more going forward again, if I am ever lucky enough to have another pregnancy, is an abnormality not being picked up during scans and tests. Is this a normal fear? Did all you ladies who have had subsequent pregancies have extra more detailed scans/ CVS even if your 12 week scans showed low risk?

Sorry this is a bit of a rambled post

Oh HelenLouisey - thank you for that information - I shall definitely order it. Thank you for posting - and you are right, how can anyone, anyone know until confronted with it?

I have had more than one pregnancy since my initial diagnosis for DS and I can tell you that yes, I was scared, yes the innocence and joy are lost and yes, I had more scans. I think that most women here would say that the medical profession, midwives in particular, are wonderful at providing care and reassurance with this.
I will let those women here who are pregnant fill you in on their fears, and their concerns and what they found comforting.
I would say it is normal, understandable to feel anxiety about this.
We will soon have the first wave of babies born on this thread, whose mothers had had losses. It will be a wonderful day when one arrives.
Hugs to you my dear
Bee xx

Hi HelenLouisey, nice to hear from you again.

I am one of those who is pregnant again, as I'm nearing 40 I decided not to wait too long before trying again after losing Iola last summer. I knew from conversations at that time I could just call the fetal medicine centre at my hospital if I became pregnant; and they have been very helpful throughout - straightforward, but supportive.

I could have had a CVS or amnio, just as I could have chosen to prior to knowing about Iola's problems. I was also offered a Nuchal scan this time round, no longer offered as routine by my healthboard (Iola's problems picked up at booking scan). Due to bleeding early in this pregnancy I didn't want a CVS; luckily my nuchal scan came back with a low result - not as low as with my DS but then I'm nearly 3yrs older. I've since had a 15wk scan - they would probably have offered this at 16wks as the organs would be more developed by then, but the hospital is closing and department moving. That scan was done by a consultant and was very reassuring. I also have another scan booked for 20wks.

Also I was given the option of when to book in. As last time everything kicked off AFTER I'd booked in, I didn't want to book in prior to being more confident about this pregnancy. So I'm actually booking in at the end of this month.

I have felt in limbo for a lot of this pregnancy. I don't think I was much different with any of my other pregnancies as I've had various friends lose babies before 12wks and was therefore pragmatic about it. What came as a shock to me was that a baby with severe problems could live to beyond 12wks; so my nervousness has mainly been from around 11-15wks. Having had my scan earlier this week, I'm feeling more... assured, I think. Given the nuchal and 15wk scan, I'll not opt for an amnio.

My symptoms have been more like they were with DS and less like they were with Iola, although it's not stopped me worrying. I just try to tell myself that each day is passing, and each day will bring me closer to a time when there will be more certainty, when I will find out more. And then I try and occupy myself with anything else to stop me over-thinking about it!

So - if you become pregnant, I think/hope you will get more support from your hospital; but I've also been lucky enough to deal with the same person throughout, so if you end up with a variety of people involved in your care don't hesitate to let them know you are nervous, and the reasons for that.

Wishing you strength, calmness and reassurance for the times ahead, xx NM

Hello HelenLouisey, nice to hear from you.

I'm so sorry you have the fear. Fear of judgement and fear of the future. I just wanted to say all fears are normal All of them. People have rung me needing reassurance that their belly button piercing hasn't affected their pregnancy, and people have rung me and poured out stories more like the ones we know all about. All fear is real and valid.

Cant, you always write so well and have amazing clarity of thought. Are you quite organised and 'sorted'? You seem to...I don't know, it's so hard when you haven't met someone.....but so capable. I could do with some of that. I mostly flap about.

How are you feeling about booking in Cant?

If I win the lottery I am going to rent the cottage for week. People can come ang over the week to suit them. We can all just sit and look at each other. I'd like that.

nice idea tree, though not entirely sure about just looking at one another. might get a bit odd...

Ok then, we can have some polite conversation. The weather, and choice of decor in the rented cottage.

I bet we'd natter till dawn. It would be lovely.

and Bee, thanks for your kind words re DS earlier. I treasure him, I really do. He's a lovely boy, and after last summer I treasure him all the more, knowing how lucky we are to have him. He's very funny just now, eg growls at us when he wants his way and when he's being 'strong' (I then usually tickle him, or laugh). He also says 'bye bye' to our plates of food when he's finished his dinner and wants to move on to pudding. He's not got many words but knows all about how to communicate...

Tree - we could share cashmere scare stories. DH has bad habit of shrinking any cardi's I buy, so I have to relegate them to sleeping clothes instead of wearing clothes. I refuse to get rid of them even so!

Oooh yes. I might even bring my Belle Maison silk and wool wash, which smells of marzipan and sweeties, and offer to hand wash your jumpers for you all. An act of love, I hope you all agree.

great, I've just looked at the forecast and our 'high' is -1 tomorrow, starting from -10 in the morning. I wish we could hibernate, but DS needs to run about somewhere...