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.

Allways, this sounds so, so lovely, although heartbreaking. I think so many of us relate to Somewhere over the rainbow. Can you believe I think it's Silvia's song too? In the run-up to the cremation, a movie started on TV and they were playing this song in one of the scenes and I started to cry. Also, it was the version sung together with What a wonderful world, and every time I hear What a wonderful world tears me apart too. Last time we were in the car, and they started playing it on the radio, and when he said "I see children play, I watch them grow", I just broke down.

I know what you mean about the make-up too. A long time after we lost Silvia, I just couldn't put anything on. I still don't most days, but not because I feel it is inappropriate.

I think we feel so alone in our grief, until other people come along and they confess to feeling exactly the same, or finding comfort in the same things, and we realise that although deeply individual, our grief is also common, so to say, and maybe a bit less daunting because of this.

Coffee, I know the version of those songs, its by a Hawaiian artist. It is actually the version we wanted to use, but it didn't work out that way and it was the Eva Cassidy version that was played. I remember it from the film meet Joe Black. I think all our children are playing together....after all, we found our way here are together!

Welcome Scrumdiddlyumptious...can i call u scrummy? lol, i'm a trisomy 21er too so i've been (well.. still am) there, this thread and the ladies on it have helped me so much i hope in time it will also help u as it has me.
Coffee i know what u mean about not caring about the weather or holidays i would happily live in siberia and eat whale blubber if i could just have my little Liam back and the anger and unfairness can be so all consuming which has an even bigger effect on me and is very noticable because i'm normally so positive (eg: my future mil has nicknamed me sunny because i'm always so happy it rubs off on every1!)even my blood group is B+ lol,i just kept screaming into that pillow till the pain subsided a little and DS1 helps a lot.
I'm in a bit of a pickle today did an ov test this morning and got 2 lines very nearly the same colour which i assume means i'm either now ov or close to ov which means i was fertile when we had our little accident which in turn means i'm now saying nonononononononono an awful lot! on the one hand i don't care if i do get pg i would be happy but on the other i don't feel ready yet! and i worry that somethings still wrong in there even though my consultant assured me everything was back to normal and we could try again after i'd had a period which has come and gone i still feel like if i am i will do nothing but make myself sick with worry! haven't even told DP yet am worried about what he'll say...i think i'll just wait till i can do a pg test and then deal with it no need to worry him if theres no point. Oh what a pickle DM

Morning all and a sad hello to Scrummy - I was very glad to find this thread and then overwhelmed to see how many people had been in the same position.
I thought I was doing really well and was feeling more positive - I'd even started thinking about whether or not I'd want to try for another DC in 6 months or so. But this morning I spent an hour sobbing all over my poor DH. I just started to remember when I felt DS hiccuping inside me the morning of the amnio and just before we went to Great Ormond St for the AVSD diagnosis. I can;t remember the last time I felt him move as I think it was probably in the early stages of labour when I was off my head on pethidine - I wish I could remember the last time he moved
Scrummy - I can recognise and empathise a lot from your post. I don't wish bad things on any pregnant woman I just wish I was pregnant with a healthy baby and seeing pregnant women around makes me desolate. My neighbour (who is at the same stage of pregnancy I would have been) has a DS who has just learned to walk and for the last few days they've been walking backwards and forwards past my house several times a day. I just can't look at her any more.
Always - the service sounds absolutely beautiful and I can imagine there was a real comfort to be had in being in the presence of so many others who had lost a DC.
Hi to everyone else and hopefully today will be a sunny, positive day for us all x

Lisbeth, a few days ago I was writing in here how I think I took a massive step back after what had been days and days of positivity, and all of us know all too well the ups and downs. I don't think these can be avoided. It's good that you cried, I found this is always helping me. Bottling it all up is horrible.

I also remember, very often, about the image of my baby at the scan, and the memory which is absolutely tearing me apart is how she was swallowing the amniotic fluid. And of course, her movements, I loved these so much and for a short week, when I had started to feel them, and hadn't yet have my scan, I was happy as I had never been before. Complete. The raw pain comes back even now, when I am writing about it. The only thought which gives me a bit of strength is the thought of the life we avoided, for her first of all, and also for us. The alternative was to see her being born (if she had made it so far) and suffer.

On my bad days, the unfairness of it all still gets to me, and I still shout inside. I don't think there is a way to avoid these bad days, and they come most often out of the blue. Other times, they are triggered by something - yesterday I was looking at Friends and Ross' wife was having a scan, and my legs turned to jelly.

What I'm trying to say, in a very roundabout way, is that it is so normal to feel like this, you are bereaved. Come in here and reach out if you feel it's helping you. I don't know how I would have coped without this space. Sending you much strength to get through these days.xxxx

Hi Scrum, I'm so sorry to hear about what happened, but am glad you have come over to join us. I hope you don't mind but I just looked at your one tubers thread and read through the last few pages. It sounds like all the ladies on there have been wonderfully supportive, what a lovely bunch!
Thank you for posting those observations, the documentary sounds absolutely heartbreaking. I can totally relate to what you wrote - although I don't wish other pregnant women harm I really, really wish they knew how it felt to be in our position. In fact I wish that somehow, everybody instinctively knows how it feels to have gone through this. I wouldn't wish this experience on my worst enemy though.
It is so very lonely going through this, I have considered (not seriously thank goodness) screaming at the top of my voice what has happened. It's too much to carry all on your own, it's just too heavy.

I have found enormous comfort on these pages, reading about everyone elses feelings and realising that we are all reacting 'normally' to this horrific situation and the tidal wave of grief. I still feel alone though, especially at times I can't come on here. Somehow we do have to find a way of getting through this, however hard it may be. Coffee, I think you were spot on when you said that finding others who have gone through this makes our grief a little less daunting. That's why this thread is so important.

Always, your description of the service brought me to tears. It sounds like it was beautiful and very moving. How I wish I could have been there.

Lisbeth You are doing so well, it's normal to cry and let it all out. And it's good that you're able to do so with your dh. I really feel for you with your neighbour. I wish that we could be cocooned from the real world for a while, so we didn't have to see other pregnant women just yet. This week has been so tough for me at work with the lady due three days before me. Every time she puts her hands on her bump, every time someone says she should sit down, I feel like screaming at them that it should be me too. I just can't bear it. I feel like it's actually doing me damage. At home I'm okay (unless I see my neighbour who like yours is due around the same time I would've been too) but every time I've come out of work this week I've just got into the car and sobbed. Those are the times I feel most alone. The only thing that gets me through is thinking of the suffering that our little boy was going through and that it couldn't have lasted. We did the right thing, however hard it may be to deal with afterwards. At least we know that.

Coffee, we saw our boy doing that too at the scan, and at the CVS we saw his little foot and I remember being worried because it was so close to where the needle was. And then I think of him now. It feels like another world ago. Pregnancy is everywhere, and especially when we least want to see that other people are managing it successfully. DH and I have been watching the first series of Glee on DVD (two episodes every night!) It was great, until one of the characters gets herself pregnant, cue scans etc. You just can't get away from it.
I really hope that you are feeling slightly more positive again. It's difficult to sustain that though isn't it...

I must go as I need to go and re-pot some plants. DH and I have really got into gardening over the last few weeks (after having ingored our wilderness of a garden for far too long ) I find it's really helping me and I'm becoming obsessed with flowers and bushes and things! Am trying not to think about ttc again, when AF arrives we shall tackle the subject then. By the way, I can't remember if I have asked this, but how long has it taken you all to get AF back? It's been six weeks now, and nothing yet. Not that I mind, am quite happy to stay in limbo land for a while longer!

ignored, not ingored

Warning: long post coming. I am desperate, and I am not sure I will make much sense, but I feel like my head will explode.

We have received in the post, half an hour ago, the letter which the consultant wrote to my GP after our appointment last week. And I think now we were wrong to make the decision to terminate. I will write in here a fragment of what she said in the letter:
?(?)termination of pregnancy for cystic change just above the thalamus over the roof of the 3rd ventricle and moderate ventriculomegaly. The pm report has confirmed modest ventriculomegaly with a female karyotype?. (Ventriculomegaly is the presence of fluid in the brain).

There is no mention, in the whole letter, of the cyst above the thalamus which we were told made the prognosis so bad, except in the beginning, where it is mentioned as a scan finding. The cyst and associated tissue damage was the reason why the professor at St. George did not refer us for further tests, scans or brain MRI. He specifically told us that the problem was not the ventriculomegaly in itself, but the associated abnormalities. We are devastated. I don?t remember bits of the discussion we had with the consultant, and we don?t have a copy of the pm report as we didn?t want to take one. She did say the pm confirmed the diagnosis, but she only seems to refer to the diagnosis of ventriculomegaly.

I called the hospital and of course there is no one there at the week-end to give us the pm report. We spoke with one of the registrars who didn?t know much, but she said that maybe not all cysts are seen at a post-mortem. How can this be? She wasn?t sure though. We can?t get a copy of the pm report until Monday.

For the first time, my dh admits that I might have been right doubting the prognosis. He is not sure anymore. I have a very, very bad feeling about this. If she only had ventriculomegaly, the prognosis would not have been over 95% bad, but only 30% bad, and there would have been 70% chances for her to be normal. And they normally refer you for further scans to see if ventriculomegaly resolves itself. Why didn?t I go with my instinct and have other scans? Why?!

I am devastated. If I took the wrong decision, I don?t think I?ll be able to live with myself. I don?t deserve other children if I failed my baby girl so badly.
I just can?t believe this is happening, it is a nightmare.

Oh Coffee I am so so sorry that you're having to go through this doubt, you must be despairing. It's going to be one hell of a long weekend, but you need to speak to someone who knows exactly what is going on before you start thinking you failed your little girl. You were TOLD that she had a cyst with all the associated abnormalities, what else could you do but trust the doctor? Is it possible to speak to him again?
Please just wait before you panic - you made your decision based on the facts given to you, and in making that decision you did what you thought best for your little girl. How could that possibly be seen as failing her?
Your heart must be breaking all over again, but please try to stay calm until you know more. There is hopefully a reason why the cyst wasn't mentioned in the consultants letter to your GP, so wait to hear what it is.
Sending you strength and love xxx

Monkey, my feeling about all this is a very bad one. Why didn't I go with my instinct? And what if it turns out we have been wrong and there was a good chance for my baby to have been normal? This thought is killing me.

The professor who diagnosed her had appalling bedside manner and didn't even explain to us exactly what the diagnosis was, the consultant did this the following day in great detail.

I have to book another appointment next week either with this consultant, or with another one (she might be on holiday). But I am already sure they didn't find the cyst, otherwise it would have been mentioned in the letter. I wanted to go to the cemetery today but can't go anymore. I have no right to be there.

Coffee, I'm not sure what to say other than I hope your instinct was wrong, and that there was a cyst found. I can feel your pain and distress from your post, and again I have to say how sorry I am that you are going though this.
I really hope that there is an explanation for this. If anyone is at fault here it is the professor and/or consultant who dealt with you.
I am thinking of you Coffee, and I hope you manage to make it to the cemetery. You do have the right to be there.

Oh Coffee, I can only echo what Monkey has said. I wish there was more we could say to reassure you, but I guess only the consultant can do that. Yes, it will no doubt be a long weekend for you. You know we are here to hold your hand xxx

Love to everyone xxx

I had logged on to say a thankyou to everyone for the warm welcome and say a few words but Coffee, I saw your post and just wanted to send you a huge virtual hug from the other side of the world. Monkey is so right when she says you need to sit down and go through the findings before you start to think that you made the wrong decision. I was reading through the whole thread earlier and recall that your consultant had said that your daughter's brain hadn't developed correctly from the outset? Surely he or she wouldn't have said that if there was much room for doubt. Anyway its probably not that helpful to second guess so I shall just say please try and go to her grave as you had planned. I fervently hope that you get the reassurance that I am sure will come when you speak to your consultant but I am not underestimating how hard it is going to be to wait to hear it. Please please be kind to yourself this weekend. Much love x

Thank you all. Yes Scrumdiddl, that's what the consultant said, but she was interpreting the results of the scan done the day before by the professor (the written diagnosis, she didn't see the images). I have no doubt that if the pm confirmed everything he said, the outcome could only have been very bad. But I am just terribly confused by the letter. And I really have a very bad feeling about it all. The thing is, we were so distressed at the follow-up appointment and it seems we didn't ask all the right questions.

I am going round and round in circles in my mind. I did go to the cemetery in the end, because I thought it's not fair for my baby not to go and light a candle, but I left as quickly as I could. If I really made such a terrible mistake, then I don't deserve to be there and take comfort in going to her grave. I know it's not 100% sure it was a mistake, but the more I think about it the more I believe it was. Something hasn't felt right since our appointment.

Coffee, sweetie, I wish the letter had been worded better. I wish it had arrived on a day where you could seek answers. I never saw the PM report on our first lost baby so am unsure what the protocol is (and I refused it with the second). I wish I could help and reassure but I think you need expert reassurance on the detail.

What I do know is this: you never let Silvia down. You have done everything for her. Please hold onto that.

Hi Scrumdidd, sorry about your losses, and welcome.

Hi Coffee

I am sure you will do this but just in case make sure you write down a list of all the possible questions that you have. When you see or speak to the consultant make sure your DH has the same list so between the two of you can ensure that you ask all the questions that you want to (I have often had the list and then got upset or distracted and haven't asked them when my DH could have done). Coffee from reading through the whole thread you sound like an amazing mother to Silvia and it is heartbreaking to hear you be so harsh on yourself.

Thanks you everyone for the warm welcome. I feel a bit humbled by everything you have been through, having felt a bit sorry for myself with my ectopic and then this. Hope everyone has a good day today x

Grr wrote a long post full of personals and it disappeared. I hate that!

Scrumdiddly, sounds like you've been through a lot - ectopic plus termination, horrible. Do you have other DC? I have had 2 terminations at 13 and 20 weeks - for conditions that meant baby wouldnt have made it - and have two DDs, one born in 2007 and one six weeks ago, so I feel very lucky.

Allways and Viv, your services sound so fitting as memorials to your little girls - uplifting as well as sad. Good luck with the TTC. It's scary but it does feel like a step forward. Mind you - Drama may already be there.

Coffee... hugs. Please dont beat yourself up. You've shown so much love for Silvia. You are a star.

Hi everyone else.

Yes fortunately I have a lovely DS who is nearly two and a half otherwise I don't know what I would have done. I have had a bit of a shit weekend actually as we have been painting his new 'big boy's bedroom' ready for his move into proper bed etc etc and I sat in his current reoom - the nursery - and just cried and cried. When he moves I don't know whether to leave it as a nursery or turn it into single guest room for a while. It seems so unfair that we have lost two babies who were meant to sleep in there. Not helped by the fact that the ectopic pregnancy would have been due this week and not helped by the fact I am 40 on Friday and was desperate to be pregnant again by then after the ectopic. I also had this weird thing last night when my DS had a bad cough when I became convinced that something would happen to him as punishment for ending this pregnancy. In the cold light of day this seems a bit unhinged but was convinced of it last night. Anyway, because of my age and my one tube and the fact we were trying for a year before the ectopic (because of age we started trying when DS1 was 6 months old) we are soon(ish) to start IVF as this will give us our best chance of conceiving statistically. We were lucky enough to get a cancellation appointment last week and I was very proud that I managed to come across as sane and together person in case the DR thought it was too soon emotionally to start. Anyway, fingers crossed on that journey (though the stats are about 25-30% in 3 rounds of IVF but am trying to be +ve). Anyway, thats me.

Can'tdothisagain: I have read your story on the thread and in awe you have come through this. Congrats on your new daughter and kudos for finding time to come on here and help others who are going through what you have been through.

Monkeysbum, Allways, Dramamama, & others thanks for your welcome again.

Coffee, lots of love

xx

Scrum, your little boy is about the same age as my DD1 - she is 2 1/2. They are such a good distraction.

But I understand the sadness over the nursery thing. FWIW, I would leave it as is for now, and wait for the IVF to happen. I know the statistics sound low, but you are clearly fertile so presumably you will have a higher chance of IVF working.

My mantra for getting through all this is simply one step at a time. Decorate the nursery when the time feels right.

Can you tell I am now able to feed and type at the same time?

Coffee, still thinking of you - please don't go quiet on us.

Hello ladies,

As usual, you are here for me. Thank you. We had a very busy morning DYI-ing.

It was our wedding anniversary last night, we went out for a meal (although in the morning we said we wouldn't, by the time the evening came we just wanted to go out of the house). We talked and talked about all this, and remembered every bit of those awful days when we got the bad news. And the more we thought about it, the less likely it seemed that such a terrible error would be possible. How could they be mistaken about something like this? Maybe the letter was just incomplete, maybe it goes without saying that such an anomaly is confirmed at a post-mortem.

I am still in pieces, but I am really trying to wait until we know for sure. I still have a bad feeling about this, but I hope it's not really instinct, but just fear and anxiety. I can't believe we had this appointment last week and weren't able to go out of it with clear answers. I can't believe I don't remember bits of it - it's like amnesia, my mind must have gone blank. One thing I know for sure: I am not just being paranoid, the letter really is confusing, so confusing that my dh, who until yesterday had no doubt whatsoever, started to wonder if we might have made a mistake.

The thought that we might have is unbearable. I try not to let it into my head, although it's actually already there, lurking. But I was actually thinking yesterday, even if my worst fears are confirmed, what could I have done differently? I could have had the other scan, and had actually booked it, but after our discussion with the consultant, who explained the diagnosis, cancelled it. We had done some research and realised we had been to one of the best hospitals, under the care of very experienced people. And going for the other scan would have meant that I would have gone past 22 weeks and they would have had to give Silvia the dreaded injection in the heart before inducing me.

So, in short, I don't know, I'm confused. I'll just hope today goes quickly and tomorrow brings some answers. I am anxious, and at the same time find it so unlikely for them to have been wrong.

Scrumddidl, I second Cantdo's advice about the nursery. Statistics don't mean much to us anymore, they are for the general population, there are only individual chances. I met someone the other day who had a baby at 46. And you are clearly fertile.

And Cantdo, congratulations on this milestone, typing while you're feeding. You will soon compete with Mishta

Thank you again ladies just for being here. Much love xxxx

I've been trying to think of the right thing to say to you Coffee but I realised all I could say was that I am thinking of you and have been checking off and on to see if you'd posted and were ok. I hope that tomorrow morning brings you answers delivered in a clear and comforting way.
Scrum - I hope you're feeling better about the nursery now. It sounds like it would be best to leave it as it is for now - you never know what will happen in the future and hope is very important I think.
Yesterday was a horrid day here but today seems brighter. Love to all x

Just stepping in to say hello all, and welcome (though sadly) to Scrumdiddly; I'm sorry you join the ladies here, it sounds like you've had a hard, hard time over the last couple of years. I second what Can't says - having a toddler is a good distraction, helps you get on with daily life. When I lost my DD last summer, having a 20mo really kept me going, at least until the evenings. I also know what you mean re fearing for them all the more though - because they seem all the more precious and fragile. Re the nursery, as with others I'd say take your time. Could you perhaps paint it afresh so that it is a new start, in such a way that it could be used either as a guest room or with the addition of stencils/stickers, a nursery?

Monkey, your work situation sounds very difficult. Does the person you work with who is pregnant know of your story? Hard to broach it if she doesn't though, not if you aren't close anyway. I think in this case, sobbing in the car is the best release and you shouldn't feel like you should 'cope'. Why should you - as often said, it ISN'T fair. But also you know in your heart that you did the best you could for your little boy; a choice that no-one would wish to make, but one that you made in love.

Same goes for you, Coffee. I really hope you get some clarity as soon as you can; we rely so much on the information we are given at the time of diagnosis that to consider that it might not have been right would send any of us into a spin. The decisions we all make are based on what we are told is likely for the future of our babies. I am glad that in talking this through with your DH you remembered this, that all your decisions and actions were so that you could do the best for Silvia: you shouldn't keep yourself away from visiting her at the cemetery, you acted as a loving mother. I would definitely explain to them that in making your decision, the cyst was a major factor and that you are very distressed to have no mention of it either in your talk with the consultant and in the letter.

Allways and Viv, the memorial services sound lovely.

Drama - if you find that the blue lines persist, do feel very welcome to join us on the sister thread. Kittens recently got blue lines, so is nervously facing the journey ahead, so you will have good company and lots of women to support you on your way. Same goes for anyone TTC...

For everyone else, hoping the waves are gentle for you; a year on I do still get the occasional storm of emotion, thinking about DD, but mostly it is a sense that I DID have a daughter, but that she has gone on elsewhere ahead of me. I miss her, and miss that DS didn't have his little sister; but we did the best we could in love for her.

xx

I called the hospital this morning and spoke with one of the screening coordinators. It's not so easy... they don't know where my notes are, with their medical records or at the other local hospital where I had my follow-up appointment. I explained what our concerns are and asked either for a brief appointment with a consultant (ours is on annual leave), or for a copy of the pm report. I said we already discussed the report and I only have one specific question, so we would be happy with a phone conversation in which this question could be answered.

The midwife I spoke with said she will do everything humanly possible to give us an answer quickly, but it depends where the notes are. She will give us a call this afternoon, but we have been warned that it might take a few days if the notes are at the other hospital.

So we'll be in limbo again for a few days I think. I am so, so annoyed and angry. I just feel like every time I feel a little bit better, something comes up and kicks me in the teeth. I am not sure just how much uncertainty I can deal with. We are supposed to go to Paris on Wednesday, and come back on the bank holiday Monday. We have some dear friends there. I was hoping this might be like a breath of fresh air, a few days when I could put everything on hold and just enjoy myself. Not so easy, it seems.

Sorry for the totally self-absorbed post, I know so many of you are struggling so much right now. But I just feel very angry and fed-up, I feel like I can't take in any more information. When will it stop? Not the sorrow or grief, I know these will be here for a long, long time, but all this uncertainty. I just want to know everyting there is to know, so I can move on.

Coffee, I know you?ve had doubts over the decision and after you saw the consultant questions remained unanswered and now this letter....please know it?s all ?normal? too feel that way, especially with the letter and its awful wording. I hope the hospital get back to you fast. You?ve had a horrendous weekend. I agree with your last post though, they would have suggested waiting if more details / information could be found, if there was a doubt. Going through the procedure to stop Rose?s heart at 31 weeks was awful, the guilt I feel is consuming, of cause I know you feel the same.

Please don?t say you don?t deserve to feel comfort for visiting Sylvia, I think it is especially important now that you take comfort, feel the warmth and depth of your love for your daughter. You don?t deserve this pain and doubt, but you do deserve comfort, love and another baby.

Firstly, Coffee i've been thinking of you over the wkend and i am ending u big virtual ((hugs)) and positive energy...i don't know how much that will help but the thought is there , Numpty thanks for the invite i'm now in tww limbo can't test till June 4th but if i do get a bfp i will certainly be joining up on the sister thread as i think i'll need all the help i can get! luckily i have lots to distract me this wk as were going to London on fri till tues to see family (both mine and DP's) so that should keep my mind from wandering, i'm desperatly trying not to symptom spot as i had no symptoms with Liam till af was late, but i woke up this morning with horrid metalic taste in my mouth and haven't been able to get rid of it all day! it's actually making me feel naucious.
Every1 else i shall catch up with u soon as i'm off to do the nursery pick-up Lots of love to all DM XxXxXxX