Talk : Antenatal support thread for women who have chosen to terminate V

[treedelivery]

Welcome to the 5th thread.

An amazing day to begin a new journey together. The thread babies are arriving and we take this as a positive nod from the great karma controller - whoever and whatever that may be.

Good luck to our thread, to the souls who read, those who post, those who drop in to learn and hold hands.

Our cyber bench is a supportive place, we sit outside hospitals as strong but scared women go to ride their wave. We huddle in our cottage when the weather is bleak, stormy or biting cold.

When the sun shines on us we share stories of real life, gain strength and giggle together in times of warm weather.

So much sorrow here at the moment...

Gina, in a way holidays make it worse because they give you time and space to think; sometimes, in my experience, day to day life is easier, because the very routine has something reassuringly numbing about it. Of course you arent 'over it', but I know people never really get that if they havent lived it themselves. Keep talking to us - we have all been there or are there. How is work?

Coffee, the funeral will be less bad than you think. I promise. And I say that as one who cried through both of mine. The main problem as I see it is we have so little to remember; there's none of the warming memories that we usually get with funerals of people who have lived lives. But there is some real comfort from your baby's life being commemorated, or at least there was for me. And Silvia will always be with you in your memory. I know how hard it is to move to accepting that your baby has gone. Sometimes I still don't quite believe it. But the funeral will help you to let go gently. It will and we will. Still you are right to be angry, though. It's all so crap.

Babylily, your message worried me. I too have isolated myself from people through all these experiences. I think you ought to consider some kind of counselling to try to help you work through all of this - OK not to resolve it, but at least to find some sort of path through it. I think some other people here have tried counselling and found it helped. It might not help you but you sound so lost in that post, that I feel like you need some kind of support in getting through this, and it sounds like RL people aren't helping with it...

Peanuthead, good luck with the viability scan. I echo the others - am sure that the ADs made no difference. I have spent so much time wondering if what I did caused the problems I have had, too. It's natural I think to seek an explanation in the absence of expert answers. Coffee, I havent had the swine flu jab in this pregnancy either. I nearly did at 22 weeks but got a sort of flu the day before I was due to have it, and then chickened out. I couldnt bear the uncertainty over whether or not it might cause problems that I could beat myself up for later. Totally understand your relief about that now... Anyway, PH, I really hope the scan goes well - and your DD is okay with you - shame on your DH for not coming or at least babysitting...

Bezzy, I have no folic acid knowledge. Could you CAT Shangrila? I think she might be the guru on this. April sounds like a crap month for you - you need to plan nice things to get through it.

Justa, your analogy is so right. I sometimes feel angry like a toddler who isnt getting exactly what he/she wants. And I think your grief is certainly at least comparable to ours. Losing a parent must be so hard. And you have your three gorgeous boys to run round after at the same time.

Hi Bee; hope you're okay, and hi everyone else...

Oh Babylily, please don't worry about not answering to everyone, and about not being able to offer support, none of us ?newbies? can just yet.

And please, don't even for a moment think you are alone. I am so sad and worried reading your post, and I wish so much I could find something to say. I haven't had fertility and genetic issues, at least not yet, so I don't have any advice to give you, but this thread is proof there is hope.

Also, everyone here seems to have received the advice to be grateful about existing children, or hopeful that they will have other children. People just don't have any idea, so please try not to take this to heart, they just don't know. You carry your babies' memory, and your love is enough to keep it alive.

And please, please, please, try to eat, don't punish yourself, you've been through so much already.You are also a victim of a dreadful situation, and if you made an awful decision it was for your babies, it was out of love.

I am really worried about you Babylily, and my heart breaks for you. Please, do not even think about things such as stepping in front of a bus, or that you'd rather not be here. I really can't find anything useful to say, but if I can do anything for you in RL, please just tell me. We don't know each other, but it really doesn't matter. Is there any chance you get some counselling? I know you'll move out of the area soon, but maybe your hospital or GP can arrange something for you until then, at least a couple of sessions? Sometimes it's so good to talk and let it all out, it might make a huge difference.

Also, posting in here is therapeutic, could you maybe go to the local library,at least for half an hour each day, and unload here? We do care about you, please do try and take care of yourself, and don't for a moment think you are unimportant.

Sending you lots of love and a big teary hug xxxx

X-posted with you Can't, thank you for the encouraging words. I still have more than a week to come to terms with the thought of the funeral, I'm very teary and shaky when it comes up in my mind, but hope to put myself in a different frame of mind, so it's not so daunting anymore. xx

Gina - I'm with everyone else on the subject of holidays. For me, even when life's a ball, they have the potential to be so stressful. I once took a 'recuperative' holiday, like you, after the stark and unexpected blow of an ectopic pregnancy. But all it did was to transport my sadness to another part of the world. And all around me people were heartily engaged in the business of having fun. And everything cost a fortune! Like you, we came home, feeling that bit more bereft. I'm sure there will be golden, memorable holidays for you in the future. But for now, perhaps other things have to be worked through first. And it is fine to tell people who expect to hear that everything in now rosy, fixed even, that quite the opposite is true. I hope that the sun shines for you in your own corner of the world, very, very soon.

Dearest Bezz - As Can't (waves) has suggested, I've done a fair bit of research on folate supplementation and am happy to answer any questions you may have. My two initial comments - if we were ever to contemplate conception ever again, I would absolutely, absolutely ensure that it was on the back of 3-6 months of a higher level FA dose. I 100% believe that our change of fortune is down to a number of factors and to my mind, this is the biggest. Secondly, I think it's highly unlikely that your gp will be incredibly informed on the subject. It would be fantastic if I could be proved wrong here but I've lost count of the number of medical professionals who looked at me as if I was barking mad when I suggested supplementation. The majority are very aware of the neural tube link but unaware of the possible links with aneuploidy. There is an excellent paper on this which gave me tremendous heart. I'll see if I can dig it out for you. I do hope that your consultations etc will give you something to work with and a sense of direction for the future. My love across the water to you and yours.

Sorry to dash, but of course, the biggest of hugs for those who are finding things tougher than tough at the moment.

Babylily - my dear girl, you have been through an enormous unbearable torture that is so very wrong. It is normal to feel desperate and to let thoughts like that skim through consciousness. But what matters is you and looking after you. If you cannot do it then someone else must. I think it makes sense that you are trying to gain control by refusal. Refusal to eat, to join in with old friendship. Somehow you need a friend honey. You deserve a friend. You sound like a good, thoughful, sensitive intelligent woman. We are here, I bet your husband is here too.
Your daughters love and need you too and we need you.
Please do not think you need to reach out here and support us; we are okay. Safety in numbers. There will be a time when you feel stronger.
Coffee - thank you for asking after me poppet. Yes Friday was harder than I imagined. And the next morning, fresh tears presented themselves, the old sorrow back as good as new. But you know what Coffee? There were days, weeks, months when it would have floored me. When the weekend would have been lost to utter heartache and misery, when I would have not been able to get back on the surfboard. And this time, after a hug and tears, we resumed our day, I was able to go out in the sunshine, see an exhibition, smile. So it does not go, but it becomes less intense, more manageable, more absorbed into the pattern of life.
This will happen to you newbies too. When the time is right. Not now.
big love and gentle hand-holding to you all
Bee xxxxxxx

Babylily, how are you today? I hope you can read the posts for you and that today the despair is a bit less intense xx

Bee, so good to hear you are now able to shake off such difficult moments much easier than before.

Shangrila, can I ask a few questions about the folate as well? No rush to answer, but do you think, after what you've researched, that it might help avoid other neural problems, and not only NTDs? You are saying it might be linked to aneuploidy as well.

My baby had ventriculomegaly (accumulation of fluid in the ventricles) and many cysts, the most important ones on the thalamus. It's still early days for us, we're still waiting for the results of the post-mortem and all the blood tests they've done on me, but we'd definitely try again in the next few months, if the results are ok. So I'd like to build up some folate reserves until then, and if there is the slightest chance for the high-dose folic acid to help, then I'd run to my GP asking for a prescription.

Which brings me to my next question: if my GP is not convinced (very likely) and doesn't want to give me a prescription, can I still get the high-dose supplements? Was it hard for you to get a prescription, you mentioned doctors being very reluctant to accept what you were saying.

Thanks a lot, and sorry if you already explained all this previously on this thread, but there are so many posts and it takes a lot of time to read them all.

Big hug to everyone xxxx

You are all right about the holiday, in hindsight it was too early. When we were here all I wanted to do was go away and when we were there all I wanted to do was go home.... Now I feel like i am carrying all the grief and sadness and everyone else is fine and they are expecting me to be... Being back at work is strange, all of the men are very uncomfortable speaking to me, the women are all fine and very supportive. I am pleased to be back in but finding it very hard to concentrate on anything.

Coffee I understand completely what you have said about the anger as I think we are in a similar place. Although we opted not to have a funeral as I felt that I couldn't cope with arrangements etc. Instead we arranged for a cremation and her ashes to be put in the garden of rememberance at the hospital in a special childrens area. In some way it felt right for her to be there at peace with other children.

babylily I have felt like you although not for the same reason. I too have thought life isn't worth living, if I didn't wake up what difference would it make, the though of getting up and washing is too difficult to contemplate and starving myself to control at least a little something in my environment. In the past I have spent months feeling that everything is moving too fast around me and I have been in the fog. It will pass you will get through it. Just remember that. I agree that speaking to someone will help.... although there does feel like some stigma attached it is very worthwhile as sharing will lift the load. Please let us know how you are feeling. much love. xxxx

I am also keen to start on an increased dose of Folic Acid as I want to take this for as long as possible before we start trying again. I am interested how I can get hold of this. I was under the impression that I would get a pescription from the GP. As we had a very clear diagnosis of spina bifida I assumed that this would be sufficient for the GP to pescribe?

To everyone else I am sorry that I haven't answered you all as I have rambled on for ages! - I hope you are all ok big love to you all. xxx

Hi Gina, as far as I know if your baby had spina bifida getting a prescription from your GP shouldn't be a problem at all. I asked Shangrila because my baby didn't have spina bifida or anencephaly.

As for work, this is my second week back and I can hardly do anything, I can't concentrate either. Luckily for me, I work from home most of the time, with occasional trips throughout the UK and in London mostly, but I cancelled all of them for the next 2 weeks. I have also taken next week off, since the funeral is on Wednesday. We decided to go away after the funeral, but it won't be a holiday (as you said I'm so not ready), we'll just go to Devon or Cornwall, have long walks and take it very easy. As the season hasn't started yet, I expect it to be quiet.

Babylily, I feel for you. If there is no one in RL you feel you can/want to talk to, and you can't get to a computer, perhaps you could start a journal? It really does help to get your feelings out. I had the same thoughts at times after losing my first daughter. Â I don't know about you, but for me the thoughts were more if a coping mechanism - sort of like knowing that if things got too bad, there was always an escape. Even while I was thinking of ways I could do it, I knew I never would, knowing how much it would hurt DH and my family, and I also believed if I did end my own life, I wouldn't get to where my daughter was anyway, which is the only place I wanted to be. I certainly didn't want to be on this earth. But I reluctantly stuck around, and all i can say is that I am so, so glad I did. The sun will shine again for you - it will. That probably means little to you now, when you just want your little boy back, but please, just hang in there. I promise you will be okay. Know we are here and we care for you, as do I'm sure many in RL do. Keep expressing your feelings any way you can and take care of yourself xxx

Gina, it's good (for want of a better word) to hear from you, although I'm sorry your holiday was hard. I agree with Can't re: comforting numbness in routine. Sometimes, in grief, it's hard to fathom how the world is still turning, let alone seeing people in holiday mode, having so much fun. I imagine it was such a stark contrast to how you were feeling.Â
I started the high dose folic acid after my termination for T21 (and now have a 6 week old daughter). I read a few articles about it on the web, and thought, it can't hurt (besides potentially masking a vitamin deficiency - can't remember which one, though I'm sure Shangrila knows). In Australia you can buy the high dose stuff over the counter. Though, I'm sure you'd have no trouble getting it prescribed with a history of spina bifida.
Yes, it's hard when it seems people are expecting you to be 'getting over it' so to speak. Gees, it's such early days for you. And grief can be a 'one step forward, two steps back' kind of thing, as you know yourself. For a while at least. Just take it at your own pace, you will get there xxx

Coffee, I worried the other day when I posted to you, hoping I wasn't too discouraging when I said I still felt I could still shout about my daughter dying all those years ago. I remember reading, after she died, someone who had lost their child years and years before saying that they still thought it was unfair 15 years on - and I remember thinking 'oh great, I'm still going to feel like crap in 15 years'. But it's not like that at all. It sounds so trite I know, but the loss really does become a part of you, you do learn to live with it, and not in a miserable way either, far from it. But at the same time, I will never think my 12 week old innocent baby dying was fair. And I never shouted about that - something you DID do, which I feel is so good - that is what I was trying to convey. (I better do it soon, as the image of an old lady shouting words of injustice about a child she lost when she was young is quite pitiful) Also, having a new baby brings back some painful memories, more so with Bella than my other girls, I feel, because of her early health problems and trouble I had with her breathing monitor. Very confronting. Anyway, you sound very in touch with your feelings, and already so wise. Wishing you strength in this time leading up to the funeral xxx

Peanuthead, good luck with the scan, whenever it may be. And with keeping DD entertained. Do you think it might all be just too confronting for DH? I know it is for you too, and he should be there to support you, however without meaning to sound too sexist - men can be funny things. My DH did the same to me at my last scan, and I know he could have had the day off if he really tried. I also know he was scared to death of possible bad result and was chickening out simply because he could. If only I could have too!

Bezz and Shangrila, lovely to hear from you both xx Bee and Cant, with your loving support as always xxx

Going to try to sleep now (dh is home and driving me NUTS with his snoring!!!)

Love to you all xx

Oh Babylily, not much I can add to the lovely wise words of everybody else. I really do hope you feel better soon.

Thanks for your advice too Shangrila, hope you're settling in nicely at home now and getting some zzzz

Just thought I'd pop in to say that I've just come back from my GP armed with 2 months supply of the 5mg folic acid. As Shangrila predicted, the doctor had never heard of it being used for anything other than for NTD, but said it could do no harm for me to have it.

I know it won't fix what's happened, but I feel a tiny bit more positive by taking some action, and who knows if things will change in the future. I still have the Capt to get around, who has now said, 'definitely never again'

Mishtabel, how long did you take the 5mg FA for, before conceiving?

Hello to coffee and gina. Sorry your holiday was disappointing

Justa - you amaze me, how do you still find the time to keep up to date with us?

Bee - much love to you as always

BK xxx

Hi Mishta, please don't think for a moment that your words were discouraging. It would be so unnatural if you didn't have the anger still in you. It's so unbelievably unfair to lose a child, what I struggle most with is the thought that our babies were all so innocent and deserved a chance. And it's so sad that we can give a lot to our children, but not a bit of luck (I didn't mean this to rhyme...)

As you say, it never goes away, and heartbreaking as this might sound, to me it's also somehow reassuring. I don't ever want to forget my baby or what I've been through, all I want to do eventually is to carry her memory with a bit more lightness. But as everyone here says, this will come at the right time, for the moment it's like a stone in my chest.

Lots of love Mishta, and a good thought for you in your battle with the painful memories, you are so brave and will get through it with baby Bella in your arms xxxx

X-posted with you Bezzy, so glad you got your folic acid. I might try as well then. Good luck with persuading the Capt! xx

Today I read these quotes and though I would post them

A wife who loses a husband is called a widow.
A husband who loses a wife is called a widower.
A child who loses his parents is called an orphan.
But...there is no word for a parent who loses a child, that's how awful the loss is!"

• Neugeboren 1976

"When children die, the bond doesn't break... [But] the parents face two mutually exclusive facts. The child is gone and not coming back, and the bond is...as powerful a bonding as people have in their abilities... [Bereaved parents attempt] to let go, not of the child, but of the pain." - Finkbeiner, 1996

Gina, those quotes are so apt. I think it's really hard to know how to react to the loss of a baby, because above all it is the loss of a future that we are mourning, a future we could only imagine. And it's hard not to think that moving on with life means letting go of the baby we still want to cling to.

My babies were both cremated and ashes scattered in the hospital Garden of Remembrance for babies who have died. I can't think about that too much or I feel horrified that I let them go. Even though it was the right thing to do, for me, and even though I am okay, fundamentally, the pain never entirely goes away-it just changes shape and feel, somehow, and becomes part of life.

Bee, hello. You have such wisdom and generosity of spirit; you are an inspiration.

Can't, I understand so well what you mean by saying you feel horrified that you let your babies go. As you know, I am struggling with this as well at the moment, the cremation will be next Wednesday. We decided to have Silvia cremated and then bury the ashes. As the day approaches, I feel more and more like a wreck. And all these arrangements I'm making at the moment, it all feels surreal. Maybe the anticipation is really worse than the day itself.

But does this really mean we let our babies go? What you're writing here is a proof to the contrary. And I know that I'll have to say good-bye to her next week, but I am sure I won't be able to let go.It seems to me that this thread allows us to keep the connection alive, while going on living.

As for mourning the future we could have had, I still can't do this, not fully. When I cry, it's with regret for Silvia herself, it's because my heart breaks at the thought of her image on the scan, of her tiny body. Every time I feel overwhelmed with regret for us and tears come to my eyes, I stop myself, there's a little voice inside saying "this is not about you". And it's becoming stronger and stronger, what I',m trying to repress, and I'm sure it will come back to bite me when I least expect it.

So yes, I'm having a bad morning, and it will all be made worse when I go to the hospital to give the chaplain the things I want to be put in Silvia's coffin. But I have to do this, and I want to do it, and hopefully one day I'll feel better because I did it.

Thanks Coffee ((hugs)). Sorry you're had a bad morning. Even though certain things you are doing for Sylvia at the moment are heartbreakenly hard, I'm sure one day, as you said, you'll be glad you found the strength to do them. Rarely do people regret what they DID do when a loved one has died, but many have regretted things they didn't do - and there's no going back, as I'm sure I don't need to tell you. Also, like you said, I found the actual funeral easier than the anticipation (I didn't have a funeral for my last baby as I wasn't quite 18 weeks, and they don't offer funerals here unless you're over 20weeks). I was told that I would probably not remember much of the day (which turned out to be true), so it was suggested I have it videotaped. I know some would find this macabre, I did a little myself, but I didn't want to regret not doing anything that was suggested to me. I only watched it a few times, and that was in the early days. It actually helped it sink in that it was real, and also helped � at times when I knew I needed a really, really good cry. Wishing you strength for the time ahead xxx

Cant and Gina, that your babies are with other lost babies in the special gardens of the hospital is lovely (in a heartbreaking way) xxx
Gina, those quotes are so, so true. Thank you.

Bezz, I was actually taking 3mg of folic acid (from what I had read, anywhere from 2 to 5mg was recommended, and as the conception/pregnancy supplements I was taking already had 0.5mg, I figured I'd just have half a 5mg tab). I was probably taking this for almost a year before I fell pregnant - I would've been happy to be pregnant after a couple of months of starting it though - just didn't happen that quick for me (DH working away and all). Like you Bezz, it made me feel like I was doing something positive, and when I found out I was pregnant, I actually felt quite protected against chromosomal disorders because of it (until scan showed NT of 3mm - but as we know, all good). Whether it was a false sense of security or not, who knows, but it DID make me feel secure, and I had the optimal outcome, so I'm definately all for it. Good luck with Capt C. Didn't Bee give him that nickname because of a similar viewpoint once before? All the very best to you Bezz xxx

Allways, if you happen to read this, we are all thinking of you xxx

I'd better get back to sleep (I'm now in spare room due to DH's relentless snoring)
Hello to everyone else xxx

(Hello Tree, if you able to find time to read) Ã? Ã? Ã? Ã? Ã?Â

What IS it with those A's?? Its ever since I've started copying and pasting (kids to me how to do it from my phone). So, sorry, please Ignore them - it's not some weird Aussie thing, I swear

Hi all

Coffee, planning the funeral is so so hard. I didnt really plan ours (the hospital chaplain did) but the bits I did do (sorting out what to put in the casket, etc) I found very hard and ended up wailing over silly trivialities. I think you're doing really well even though you're having a tough day.

One thing Lins wrote about here once was how what we have done is release our babies from pain by living their pain for them. You have done that for Silvia. And that can comfort you when you feel you let her down. (that feeling never really goes away - at least it hasn't for me - even as the extremity fades) You are carrying her pain, and that's what makes you a mother.

Mishtabel - spot on about Capt C. He has form! And your advice on the folic acid sounds very sensible.

I am sleepy beyond belief so am going to bed (nocturnal toddler is cause of this...). But big hugs to everyone. Sorry for lack of personalized messages.

Oh Coffee, I hope that your trip to the chaplain wasn't as hard as it sounds and that your overwhelming heaviness of soul from this morning has lightened, just a little. Having always gone down a surgical route, I have no experience of planning ceremonies and so am of no help whatsoever but I do see that Justa, Can't and co have been on hand to give you the benefit of their experience and advice. You're in good hands.

Mishta has said much of what I would say about Folic Acid. Coffee, the link that I've read up on is very much DS and possibly other trisomies. Even so, as Mishta says, I don't think supplementation can do any harm, as long as we aren't talking about taking it for years, or later on in pregnancy - after 35 weeks. Both of these have been suggested as possibly problematic in research, but I don't know how robust these studies were and anyway, we're not talking about such timescales here.

The least technical paper I came across is at: www.medsci.org/v02p0093.htm Based on this, I would be inclined to take 5mgs for a minimum of 6 months. As suggested in the paper, I took a high dose of B12 alongside.

Bezzy, I am delighted about how accommodating your GP was. I went in to see mine, clutching research and was flatly told 'Very interesting, but not within NICE prescribing guidelines, so no can do' So I trotted along to Holland and Barrett, who sell an 800 microgram version and made up my daily 5mg dose from that. Over the years I have spent a fortune at H&B. I'm sure they must be missing me! I hope that you're able to talk Captain C around, if that's the route that you yourself decide is right for you. But in the meantime, taking time up to build those FA levels can only be a good thing.

Been wondering about Tree. I haven't spotted her since her return to work. If you're reading Tree, I hope things are falling back into place and that the disruption to routine settles. I always feel slightly envious of those lucky, lucky ladies who have you as their HCP!

Enough from me! My best to everyone, especially Babylily. Hope the day has been kinder to you.

Almost the weekend. Big sighs of relief from me. I can almost taste my Friday wine. xxxx

When I went to see my doctor about the high dose of folic acid she gave me the brush off, saying that if the genetic counsellor had thought it a good idea she would've said something already so as a result of this she didn't prescribe it. She was not the most helpful doctor, I think my regular doctor would've been much more helpful. If you have yet to get an appointment with a genetics counsellor perhaps you could bring this up and see if they can recommend your doctor prescribe it. The way I got mine in the end was after writing a letter of complaint to the head of FMU about the way my last termination was handled. He responded by phoning me for a chat and asked if there was anything I needed to ask him, so I asked about the folic acid. He said what a few others have said, there isn't conclusive proof that it will make a difference but there is no harm in trying so he wrote a letter to my doctor recommending it to be prescribed. So, if you can get a "specialist" to endorse the prescription that may help your chances.

Just a really quick post to say Hi to everyone, I will check in when I can but I am thinking of you all.

Coffee, I hope you are feeling ok today. I was thinking about you last night and how painful it must be for you planning the funeral. All I can say is that I'm here if you need me. Much love xxxx

Well, I gave up, it was bound to happen. I went to my GP this morning and he prescribed Diazepam for a few days. I really feel on the verge, I had a few days when the despair was coming and going in waves, but now it's just here, all the time. As the funeral approaches, my anxiety becomes almost unbearable.I know I'm going on and on about the funeral, but I can't help it. Mishta, I don't think that videotaping the funeral was morbid at all. It might seem like it to someone who didn't have such a loss, but the "rules" change completely then.

I just can't help thinking about the moment when the casket will disappear behind the curtains at the crematorium, and this will be it...can anyone shake me and tell me I am being silly?!

Besides, I also feel like I'm failing my DH, he is always there for me, it's as if his feelings were unimportant, because I am so down he can't even afford to let things out, he's just numb. And this is not healthy for him, I am so selfish in my grief that I can't really reach out for him. I need to find a way to get myself together, for his sake.

Sending you all a big hug and sorry for not replying to everyone. Thank you all for your support xx

Hello Chocolate

Very brave of you to go to your GP, but SO the right thing to do. Next week will pass, and you will live to tell the story. What everyone else has said is brilliant advice.

After our diagnosis, I remember being absolutely terrified of being alone, was hideous, but didn't last for long.

Thinking of you, and hoping that you find a way of making the next few days pass peacefully.

Much love
BK xx

Thank you Bezzyk. Hope you are ok too xx

I also was very afraid of being alone after my termination, luckily we had a friend come over for a week so dh could go to work.