Antenatal support thread for women who have chosen to terminate VI

[Coffeeandchocolate]

Time for a new thread, ladies. May it continue to give us comfort, and help us find a special, sunny place in our hearts, where our babies are safely tucked in. May it bring good luck to everyone who posts or justs reads.

And to the old-timers, it?s so lovely to still have you here with us, reaching out.

Thank you all for your thoughts. Today was painful but it was the best thing for us. Rosie had a high level of mosaicism and a range of developmental difficulties which mean she was unlikely to have survived for more than a few weeks further. I would have miscarried by now.. It was hard to hear and to read the report, but it was good to know what she really went through. DH said that until today we had this phrase 'Trisomy 9" and the report has turned it back into the difficulties that our daughter suffered from - if you see what I mean.

Lots of tears, particularly at having to go back there in the first place, very painful. But the consultant was good and we know everything we can know, we just have to get on with the grief and on with our lives.

Thanks for the poem Natz, such a strong one. I'm reminded of the daughter of a friend of mine who has severe CP and can't stand without support. She wears foot supports called daffos. They are ugly, hard and they look uncomfortable, but she can't stand without them.

Sarah, I am glad that the post mortem confirmed you made the right choice. It doesn't take the pain away, but it is nevertheless an important milestone. xxxx

Sarah, it is so important to know all you can, to have the information about Rosie. Yes its so difficult to hear and going back to the hospital, meeting the consultant isn't easy at all. I'm glad its brought you some clarity. When we finally got a copy of the pm report I felt so much more informed and admit I haven?t doubted our decision as much.

We are currently attending group sessions held by a local child loss support centre, attended by parents who've lost children during pregnancy, birth and up to one year old. What struck me is how ordinary everyone looks. If I had met these people under different circumstances I'd have no idea of the sadness and loss in their lives. I've often wondered how others saw me. Do I still look 'normal' on the outside despite being torn apart inside? I found my answer.....Yes I do and I'm shocked by that. How can anyone live with such sorrow and not carry the scar physically? Yet we do. I'm finding the sessions very hard and not sure how much they are helping me. My husband finds them very helpful, I?ll keep going for him. I hope the date for our couples sessions come through soon, I?m giving serious thought to take up the offer of counselling at the clinic where we had ivf. Not being pregnant yet and no hope of being so soon, is crushing down on me too. Of cause all these sessions have to fit around work and the snag is I feel my employer?s generosity of time to attend sessions/appointments is running out. There is a distinct feeling at after seven months I should be further on than I am.

To be honest, its all so exhausting and I wonder how much more I can go on like this.

Sarah, I am glad the pm held the answers you were looking for, although I know this is never something that can been seen as a good thing, you know now that the diagnosis was correct. I am in the same place as you were - wondering if the hospital had mis-diagnosed Cara's conditions. We still have had nothing back from either of the hospitals. We had to ring to request the full CVS report, and after much chasing, they sent us through the prelimary report...!
We are now still waiting to have an appointment with the Genetic Counsellor to discuss the chances of future babies having Turners. Because Cara was just under 15 weeks gestation, no pm was carried out. And I find myself constantly asking 'what if her heart was fine and they made a mistake...' I am never going to know.
We had 3 specialists looking at the screen at the diagnosis scan, so I am guessing at least one of them would have said something if they were unsure. I just feel like we have been forgotten by the professionals since it all happened. Nobody has contacted us, we have done all the chasing. Is this what usually happens? It has been nearly 5 weeks, and nobody has arranged to see us to give us any answers. Had it not have been for Cara's cremation on Thursday, I would have sworn this had all just been an awful nightmare.

Allways, I wish I could hug you and make everything better. My heart is breaking reading your post. I hope your employers can empathise with what you have been, and are still going through. I can understand how you must be feeling, not only is there the stress you carry within yourself, but with the added worry and pressure from other parties (even if unintentional), it doesn't help with what you are going through. I would say try not to let it get to you, but I know that's not possible.
If there is one thing that has opened my eyes since going through everything with Cara, it is that there are so many people out there who have had similar experiences, and as you said, you would never know. Maybe your employers can understand. I used to work in the NHS as a manager, I dont know what you do for a living but if you have an occupational health department they will be very supportive of the time you need to take off. If not, it may be worth having a meeting with your manager to let them know what is going on still, and let them know you appreciate their support. You may find they can offer you extra support at work.

Sending love and strength out to you all x

Allways, big hugs. I wish I could say something, but I can't. 7 months is not a lot though, you've not only had the loss of Rose and Lily to cope with, but so many other things. Natz' idea sounds good, I don't know if it's feasible for you?

Natz, I just wanted to say that your post rang a bell for me, I was tortured by the same doubt, what if they got it wrong, what it the prognosis was wrong, what if we should have waited a bit longer and things would have improved? You can't avoid these worries, what we did what against our overwhelming instinct to protect our babies. I even called ARC and asked them if they heard of any case of wrong diagnosis and they didn't. They said that doctors are very cautious when dealing with this, it's not something they treat lightly, and also they don't want to be sued so they never give a diagnosis unless sure.

I am angry on your behalf at how your hospital is dealing with this. We waited 3 months for the post-mortem results, but we were told this is how long it would take. Can you contact your local PALS and ask them to get involved?

I tried PALS when we were waiting for the cremation date as I had no idea who to contact, they were very sympathetic and supportive, but bless them, they were totally useless. I am going to keep just chasing up the consultants and their secretaries as this seems to annoy them into action.

I have a feeling that because we decided not to continue the pregnancy the CVS results were either put at the bottom of the pile, or stopped being processed all together. None of that matters anyway as they took a sample from Cara which will give us the answers we need.

I also somethimes find myself wondering as you did Chocolate, what if we waited a bit longer. I know I would have then had to go through the birth process, but at least then I would have been completely sure of the decision. Although with all of the evidence from the scans on her heart, there really was no other decision. I could have waited and lost her, or I could have waited and had to still make that decision. We were never going to be able to bring her home, even if we had decided not to take any action. Her heart was broken and there was nothing they could do to fix it.

My two other little DD are now scrapping so I will have to leave this post for now x

Allways, there's no time limit on grief. And seven months isn't that long really, especially if you are struggling with IVF as well. I'm suer that other's don't expect you to be 'over it' even if they are at different points themselves.

Natz, I completely understand where you are right now. And I do think there is a big gap after the fact. When we went for our appointment on Monday they didn't have my records because they couldn't find them. I know that its important for them to prioritise people in the middle of treatment, but we still need care too.

That being said, although I felt much better on Monday, I collapsed completly yesterday. Nearly couldn't make it to a meeting that I had moved because it clashed with Rosie's funeral. My head full constantly with images of Rosie and thoughts of her difficulties. So the PM was a milestone, but acceptance somes from inside.

I'm going to have to tell my manager that I need to pull back a bit again from the management duties - I'm just not as strong as I thought I was.

Oh Sarah,

I really feel for you. I am fortunate in the sense that I am a stay at home mum (working during bedtime hours from lap top), and the company I work for is managed by my mum so she has been very supportive as you can imagine. Going back to work after something like this is hard. Going back into a management role must be even harder. Any role that involves responsibilities of others or front line work is either a blessing or a curse. You can either detatch yourself for a few hours of the day and throw yourself into work, or struggle to hold it together AND try to do your job.

I hope your manager is supportive. Could you maybe cut down your hours temporarily? It's still all very raw.

We all have strong days, and we all have days that we struggle to get through. There's no amount of good thoughts and wishes of strength that can help. I just hope you are ok and you are fully supported both at work and at home. xx

Hi all, sorry for long silence.... I read, but posting is hard to fit in. Anyway I am thinking of you all.

Natz, I was in your exact position, more or less, with my first lost baby (she had Turners; it took forever for the results; though this because I DID have a postmortem for her, even though she was only 13 weeks - different hospitals, different policies?) and I feel for you. If it helps, Turners is thought to be random and unlikely to recur. I never found this very helpful, since I went on to have another baby with another fatal problem, but it is better than being given a recurrence risk. Anyway good luck with results chasing for Cara. May she rest in peace.

Allways, your desolation is utterly understandable. When do you start the next round of IVF? Talking to you and Peanuthead here, as you both have IVF to face, I am in awe of how you have handled all this and are getting through. I wish conceiving were easier for you. And I see why counselling doesnt really work - all you want is a healthy baby, not a talking shop. But counselling may help a little as an interim measure, or help you map out a plan of action. 7 months is no time at all and you lost two little girls. Be kind to yourself. Ditto you Peanuthead if you are lurking...

Hi Sarah, glad the postmortem confirmed you made the right decision. May Rosie rest in peace too. I still imagine all our lost babies together somehow and that comforts me.
Sorry it is still so hard - again it's inevitable really. It does get easier, honestly.

Lisbeth, hello and good luck with the TTC wehn you get to that stage. That recurrence risk is reassuringly tiny, but it's always scary whatever, isn't it?

Oliviacrumble, where are you, hope you are okay. And everyone else.

We are good. Babycant is 6 months, eating food and not sleeping, but a delight. Two years ago, next week, I lost my first of my two lost babies (to Turners). It now feels a lifetime away - still sad, but not raw or angry. I am not sure whether this is the effect of time or of having Babycant and will not offer platitudes. I just want to say - I hope you all get here too. Much love.

Hi Cant
Yes I am indeed lurking, and reading about everyone's pain. But I haven't the energy to post. I'm in a constant state of inertia and anxiety. Due date is looming next week. No idea what we're going to do, ttc au naturelle for what it's worth but every time I think of being pg I just feel utter utter terror. SO tired of the whole mess...

Hi I am new here having had my second termination last Thursday. I am a bit flat and still bleeding. It sounds stupid but I have only just realised that I wont be pregnant any more. All my plans centred on the arrival of this baby in march/april and now I have to change my expectations.

My baby was 13 weeks gestation and I had to have a medical termination. It only took 2 hours in the end and I got to see him and have pictures taken. Unlike some of you I could clearly see the hydrops and some of the things that were wrong with him for which I'm pleased I have no doubts about my choice and none about my previous choice, I am just really really pissed off that it's happened again.

My previous termination was a girl 3 years ago at 26 weeks for a hypoplastic right heart. I had DS inbetween and have two dds. So I am really lucky and dont want to moan about my situation but am also a bit emotional at the moment. I have been reading this thread over the last week but tonight i'm really tired and can't read more than this page.

I tried to write a few words of support for other posters but it all came out wrong and didn't sound very supportive so I'm going to give up now, perhaps i'll manage it another time. take care and i'm very sorry to be joining you. x

Manitz - just a quick hug for you and a sad welcome to the thread. I'm so sorry for your losses - there are other posters here who have had to terminate more than once and no doubt they'll be along to say hi soon but I just wanted to say I'm so sorry for you.
You'll know to be kind to yourself and to take it slowly - I hope you were able to get some rest last night and were able to hug your DCs just that bit tighter. For me, my DD has been the thing that's got me through the last very dark 6 months.

Hi to Peanut and Cant and everyone else. Peanut - good luck for the due date coming up. Your words really struck a chord with me - I hope you're ok.

Hi Manitz. It's so cruel, isn't it, to have to lose another baby in the same way. I too have terminated twice: once at 13 weeks and once at 20 weeks, because my babies wouldn't have been able to live. But I also have two beautiful DDs, the youngest born in April, and I agree that I feel incredibly lucky for that.

You know the score: pain, anger, disbelief, grief, all of it. Comforting yourself is the key, that and cuddling your DCs closer.

Good luck. It really feels unfair, doesn't it...?

Hi Lisbeth, how are you?

Hi Everyone
Manitz so sorry you've joined us on here and so sorry it's happened to you more than once. Despite the medics assertion that there's no connection and that it's all down to bad luck it seems so common to have more than one loss. Sorry - that's not very positive for those of you who've had it happen "only" once is it....

I lost a baby to hypoplastic left heart a year ago and another to a totally unrelated very rare overgrowth condition. But I keep reading of HL/RHS and then a second abnormality -I think the same happened to Monkeybumsmum and def happened to Linspins. Waiting for the day when research catches up with us and we find out why. Not that it's much comfort.

Gosh 26 weeks last time - how awful. Don't worry about posting personals - I'm terrible. I constantly lurk and constantly mean to reply but rarely have the energy but am always thinking of everyone on here. I think just to know there are a few of us all in the same sitation is enough. And reading other people's experiences makes me feel so much less alone.

Allways - you sound in a similar state to me - just tired of it all. I want my life back. Although I can't actually rememeber what my life pre infertility/babyloss was.

I have nothing to say to anyone in RL and can only really see people who know about the babies as I can't not mention them constantly. Thank god I have some good friends... Also my anxiety is through the roof - wake up in the night with palpitations etc Still my counselling will start in the New Year so not too long to go. I'm hoping that after my due date I'll feel better. There were 3 of us in my local group of mum friends all due on the same day - only one still going as the other lost her daughter at 20 weeks; lots of mutual support to be had there....my baby would be here now as due to his growth syndrome I'd have had to have a c section 2-3 weeks early ie now. ANd we'd be starting a difficult few years. Oh for those of you who don't know I "only" terminated one baby for abnormalities - I miscarried my last baby at 18 weeks and he had abnormalities but not life threatening ones - ie if he made it to 8 he'd have been ok.But apparently the mc wasn't due to the abnormalities - I can't believe that as if I did I would believe I'm cursed rather than just feeling it.

So a long me post when I just meant to welcome Manitz.....

hi again. thanks for your messages. yes cantdta I have excellent coping mechanisms and have set them all in motion as soon as i realised what was happening. The girls got me through last time and I expect they will do so again along with a bit of shopping. getting pg again and having a baby helped enormously but I'm not sure I can do that this time. It's terrifying.

I tend to think it is bad luck but perhaps this is because of the order it's happened to me. I've had 5 pg so I think I'm more likely to have something go wrong if i'd stopped at two I'd be none the wiser.

Peanut, your losses have been very close together. i'm not surprised you are suffering anxiety. I also had panic attacks and got scared of my own mortality and kept visiting the doctor with cancer scares etc.

I forgot how tired I'd be. i'm still really exhausted and keep doing too much so I'll sign off now. x

HI All,

I just wanted to say thanks for all the support you have offered me. Its been fantastic and made a big difference to my recovery.

I'm going to sign off because Mumsnet in general is too big a distraction for me, I keep exhausting myself with completely unrelated problems with other people's relationships etc. I wish I could stay to offer support to others. If only i could keep myself from reading anything outside this topic!

So thank you once again, you are all amazing women and I wish you all the happiness you deserve

Sarah

Welcome manitz - looks like we are starting the same threads. Im so sorry to hear about your experiences. I recently had a termination at 14+5 for Hypoplastic Left Heart Syndrome and our DD Cara also had Turners Syndrome.
I hope you are regaining your energy and recovering quickly. I know emotionally this will be a much longer process. I had a major wobble on friday, I thought I had been fine all these weeks. The cremation was a difficult day, but Friday I seemed to just crumble.

Had a few mishaps which just got too much for me. Firstly I had to see my practice nurse 3 weeks ago as I was still bleeding so needed a swab to check for infection. But she didn't bother to read my notes and was assuring me that many women find themselves in my position, not expecting to find themselves pregnant, thought the baby days were behind them....?! Yes, many women do find themselves in that position and decide that ending the pregnancy is the way for them, and I have no problem with that, but how dare she sit there telling me I shouldn't feel guilty about my decision as it is my decision to make - when I told her why I had a termination, she then decided it would be a good idea to take a glance at my notes, and ask if I was having counselling. It's hard enough trying to come to terms with my decision without so called professionals just brushing it off like it's the norm. Not in my life it isn't, and for those who make this choice purely on the basis that they dont want a baby, that is fine for them. But a grieving mother does not need to hear that.

I then got a letter from my local health authority at the begining of the week letting me know that the maternity department I am under was closing so I need to discuss my options of where I am going to have my baby with my midwife at my next appointment, and had I considered a home birth? Fair enough if I had only just had the termination, but this is 6 weeks later, surely my name should have been removed from the lists that send these letters out?
My darling mum gave a very appologetic midwife an ear full, who in turn gave an ear full to someone else and someone else which resulted in the Cheif midwife for South East London ringin my mum to assure her that this mistake was a one off and to pass on their most sincere apologies to me and DH.

But the icing on the cake was when I rang my hospital last week to find out why I had not heard from anyone regarding our appointment with a genetic cousellor to discuss the findings of Cara's blood tests. I was told by my consultants secretary that the letter was waiting to be dictated and sent.....
I wouldn't mind so much, but 3 weeks previously the same woman had told me it was sitting on her desk in front of her and was just waiting for a signature from the doctor. After a bit of annoyed chat, she gave me the name and the number of the person she was referring my to and told me to ring them on Friday if I had still not heard anything. Which I did. And they had no idea who I was as they hadn't recieved a referral and they were the wrong department anyway. The wonderful nurse I spoke to took pity on me though and chased it all up, ringing my local hospital and speaking directly to the secretary and telling her who she needed to refer me to, giving her their name, department, address, telephone and fax numbers. She even rang her 10 minutes later to check she had sent the fax. I was so grateful to her as I was at the point where I was trying so hard not to cry or get angry on the phone, but was in total dispair.

So now, I am waiting again. Sorry to rant. Just been such a rubbish few weeks. I can feel myself heading for a low and am desperately trying to avoid it. So thankful it is half term and can keep busy with the kids.

Sorry not a personal post, but a big hello to you all. And Sarah, if you do re-join, will always be good to hear how you are doing. Best of luck to you xx

Just wanted to say good luck to Sarah. Mumsnet can be a great time-consumer, can't it?! I wish you luck and please come back whenever you want to.

Natz, the incompetence is bad enough but the assumptions are even worse. You shouldn't have to explain or justify yourself.

hello - i've been lurking for a while and i hope you don't mind the intrusion. My sister in law is 42 and pregnant after 3 long years of trying but sadly she had her results from her cvs on thursday and it came back positive for down's syndrome. She and my brother have decided to terminate the pregnancy and i really just want to find out from those of you who have been through it how i can support them over the coming weeks - next week sounds like it is going to be a very tough week for them so any advice would be so greatly appreciated.

Hi Mystified. I am really sorry that your sister is going through this. After three years of ttc it must be so hard.

I didn't terminate for DS and I haven't had a surgical termination, which I expect she will have, so I can't really say much about that. I could tell you practicalities about a medical termination if that is what she is having.

But outside those practicalities, well the real thing you can do is just be there when they needs you. Comforting novels, hot drinks, etc, but they may just want to cocoon themselves away. Alternatively they may want to talk about it - go with the cues they give. Certainly they won't forget about it straight away and comments along the lines of 'it's for the best' and 'you can have another baby' won't help at the moment, even if they are ultimately true.

I found forbidden pregnant foods helped, like Brie and wine, oh and baking (not forbidden but just warming somehow). And lots of love.

I really feel for them. You are kind to think about how you can help. It sounds like you are a great sister.

Thanks for replying Cant - you're right I think I will just take my lead from them. They are having a medical termination I think as she is almost 14 weeks - it sounds like a very long process - when I spoke to them last night they were still so shell-shocked that I don't think they really took in what the consultant was telling them. Their main worry is things happening too fast at home before they have time to get to hospital. But hopefully they will find out more on monday.

Hi mystified, I terminated in February this year at 22 weeks for brain anomalies. There are unfortunately so many of us going through this, what helped me was to get in touch with the lovely ladies on this thread, and also with ARC (Antenatal Results and Choices). They are a great charity and offer a lot of support, and it might help your brother and SIL to speak with them and not feel alone.

I agree with Cantdo, the worst thing someone can do now is to minimise their loss and speak about other children, or worse tell them that their little one wasn't a real child. People may mean well, but it hurts so much to hear that.

They might want to talk about it a lot or maybe they will not feel up to talking at all, and you don't really need to say anything, just being there for them will help a lot. My dh went back to work after 2 weeks, I was signed off for another week, and 2 friends, a couple, came to spend that week with me. I am so grateful to them, I think I would have gone crazy being home alone all day. I was a mess, but they were there and just listened to me, and hugged me a lot.

It really sounds like you are a great sister. Thinking of you all xxxx

Mystified, Im so sorry to hear what is going on with your sister-in-law. I had a termination 7 weeks ago for Turners Syndrome and a severe heart defect, I was 14+5 but was able to have a surgical termination. I found that straight after the termination I was 'fine' in the sense that I was numb and able to speak freely about the experience. The lead up to the termination was agonising and I didn't want to see or speak to anyone, I just wanted to hide away and be with my DH and our children.
7 weeks on, I am nowhere near back to normal, and as we are now awaiting an appointment with a genetic counsellor, the tension is mounting up again.

I agree with Cant, just let them lead the way in terms of support. They will let you know if they want to talk.
I can understand their shock, I dont remember half of what we were told at the hospitals. If they do tell you anything it would be useful to write it down because they may forget this in a week or so.
I found that after the proceedure, I was irked by friends sending messages of support and told my friends (in the nicest way possible) to leave me alone, same thing when we had our daughter cremated. But I needed my family.

My DH side has been very divided in the support we got from them. His dad and two older brothers made contact a lot (more than usual, which wasn't a huge amount to start with) but didn't always ask about what we were going through, just let us know they were there, which is what we needed. His mum, sister and younger brother however just didn't acknowledge what we were going through at all. And I have still yet to talk to any of them. I am so angry with them.
I am very close to my family and have spoken to them when I needed to. They have been in daily contact either via phone, text or meeting up. But we were like that anyway.
I would suggest you dont ignore what they are going through, even if you think it is best to. But dont press them to talk if they dont want to. Just letting them know you are there af and when they need you is enough.
Also agree with Cant, the last thing they are going to want to hear people telling them is that 'it is for the best' or comments like that. Kind but totally unwanted.

Sorry for such long post. Still all very raw for me, and today I have had a very bad and emotional day.
Best wishes to you and your family. I am so sorry they are having to go through this. It is good to hear they have someone who cares so much and will be there for them. Big hug to you all xx

Mystified, if it IS going to be medical, come back and confirm and I'll tell you more about that.

I wanted to concur with Natz to say that the lead-up to the procedure was the worst part: mind numbing, unbelievable, painful, devastating. Afterwards there was a chance to kind of let out the breath I had been holding and it felt - easier somehow - even if losing the baby was horrible. But I felt very very tired and flat afterwards, almost as though I had been knocked down.

Actually I have had two terminations, one at 13 weeks and one at 20 weeks, but in a way they both felt like I've said above. Oh, and both times the hospital arranged a cremation service which we attended and chose readings for, so your sister in law might need to be prepared for that, though drip-feed that, obviously.

On a practical note if she IS having a medical termination, I would suggest you buy her some magazines, sippy drinks, maybe sweets, as it can be long and as awful as it sounds you do need distraction. I would have loved someone to do that for me.

My family have reacted in one of two ways: downplay it all entirely and act as though the babies never existed and were more like warts I had removed, which made me want to keep reminding them exactly what or more accurately who I had lost, or, the complete reverse, but equally annoying, assume that I would never conceive safely again and that I was somehow contagious.

Just listening, and giving maybe magazines and hugs, would be just lovely.

Thank you so much for your advice - i think you are all amazing for going through such tough times but still giving each other such support

Coffee - i'm glad you had friends to support you - my SiL has an older sister that she is incredibly close to and i'm comforted by the fact that she is going to be staying with them next week. Reading through earlier posts I read about ARC so when the time is right i will tell them about that.

Natz - thanks for advice about writing things down, i think that will really help them on monday - i'm sorry to hear you are having a bad day

Cant - Thanks for the practical advice about the mags - i'll pass that on to her sister who will be her all next week. As far as i know my sil has to take some tablets on monday and then go back on tuesday for somethingelse (not sure what)then she has to go home and wait, that is the bit they are dreading - is that a medical termination?