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.

Got bad sore throat so just heading to bed, but wanted to respond re Bezzy's thought re balanced translocation. I remembered my SOFT UK booklet mentioned balanced translocation, but from what it says it would lead to partial rather than full trisomy (ie the extra piece of chromosome attaches to another chromosome, called 'unbalanced translocation', rather than there being a full extra chromosome). Or the baby could have normal chromosomes, or inherit the balanced translocation, or have 'deletion' where one of the pair of chromosomes ends up shorter than the other (SOFT booklet has good illustrations, hope my descriptions make sense).

So where a baby is diagnosed with having a trisomy, if it is partial trisomy there is a chance it could be inherited (but partial trisomy can also still happen for parents with normal chromosomes). I wonder if this information would be available from your full CVS results? I had it confirmed after getting our full results that DD had full trisomy 13.

However it's probably worth seeking a referral to a consultant, as it may provide answers (even if balanced translocation is not the answer, if you see what I mean).

So sorry that you are in this situation again, I really hope answers CAN be found for you - sometimes thinking (or being told) it's just 'bad luck' just doesn't cut it. xx

I agree that the bad luck thing can be hard to comprehend Numpty. Sometimes it can feel okay and reassuring; if one has had one or maybe two losses. That it is just random bad luck. I remember feeling that I did not want to feel like an unlucky person however.
On the other hand of course, the medical profession do not have all the answers yet. My LM is still convinced that there is something wrong somewhere with him; that it is probably his sperm, since they never test sperm anyway for chromosomal abnormalities.Certainly yes, our cvs did indicate full trisomy 21. They went ahead and tested us anyway. For him, this offered no reassurance in the end as he just believes they have not developed the knowledge yet.
Is this a new phenomenon? I have no idea; did women in recent decades suffer the same series of unfortunate events? Who would know since it has been such a taboo.
I would do anything to help you have the answers Bezz. You are so young darling still. I wish I knew the answer.

It tortures me less now; the not knowing.
When in shock, the mind runs around in anxious circles trying to make sense. I think it tires itself out; and then there is some respite from the thinking. Harder to have respite from feelings however.
Am rambling now.
goodnight honey
Sleep tight
Bee xxxx

I have tried to read this whole thread tonight, but haven't managed to. Cantdothis, you are so right that we had no positive choice, I will try to remember this in my darkest moments. My nightmare at the moment is that the post mortem will show that there was nothing wrong with my baby, I know that I am being paranoid and imagine the worst, but I can't help thinking that.

Bezzy, again I'm so sorry, your history is heartbreaking and indeed no one deserves this. I hope you will have some luck with finding out more about why this has happened to you, you need an answer so much.

I am in complete awe of how strong everyone here has been, I honestly don't know how you can now have the strength and kindness to help us with our terrible journey through grief, after you had so many losses and are crying for so many much-wanted and loved babies.

Babylily, I liked your idea of an engraved bangle so much, that I went into town today and bought one, it will be ready in 2 weeks. Thank you. Also, I spoke with the chaplain today and will meet with her next week to discuss about the practicalities of the funeral or cremation. I was reassured to find out that we will be in no rush to decide what we want.

Very strange, but I feel extremely calm tonight. Or should I say numb? There are no tears, even if I'm alone at home for a couple of hours at the moment. I do stare at my flat belly every now and then, but... nothing, the same numbness. I feel like a rotten person, I lost my baby a week ago, yet here I am, calm and ready to take a hot bath...

I'll stop now, as I feel the same numbness in my words. Wondering what tomorrow will bring.

Coffee - you are absolutely not a rotten person. There is only so much anguish you can live through minute by minute. There has to be some respite; and when it comes, well it is okay.
You are a good, good person in fact; anyone can read that in your voice. If you feel numb, or detached; well I think that is all part of the reaction to grief. In the midst of my emotional mayhems, I can remember doing very banal things in a normal way. Having a hot bath is vital - you need to take care of yourself. That is okay.
I think it may be shell-shock.
I hope you sleep.
goodnight to you
Bee xxx

Must go pick kids up, but just had to say Coffee, Bee
(beautiful Bee) is so right, we can only take so much anguish. I believe our bodies know when we can take no more and that is when the numbness comes, and that is why we don't go insane or worse. It has been said many times before to just accept all of your feelings, numbness being one of them (you know what I mean). Do not for one moment feel guilty for that xx

Welcome also to Gina. I don't think Eulalia's smiley was innappropiate at all, although a smiley with a tear in it's eye would be a better emoticon. Wish I had time to post properly xx

And Bezz, dear Bezz, you are on my mind xx

Must run, love to all xxxx

Thanks everyone. You're right, I need an answer. I need to know why this keeps happening to us. It can't possibly be bad luck anymore. I just need a reason to give up as I can't take anymore.

Minibez slept horrendously last night, she has a cough and was up a LOT, I really didn't need that. And as an added bonus, I too have woken up with a stinking cold.

Weather is dark and dreary, pretty much how I feel.

Hi Bezzy, sending you a good thought today, it's never just one thing going wrong, is it?! xx

Same numbness here for the moment. I think I'll just try to go on reading the whole thread, before posting I had just skimmed through.

I realised yesterday evening that it's ok to suffer for my husband and me as well, so far I have been very hard on myself and all my tears have been for my Silvia. Suddenly I felt this enormous pity for us as well (not self pity, but I don't know how to explain it). This has been terribly unfair on us as well, and it's ok to cry for all our dreams about Silvia and our innocence too. I don't know if I'm making much sense.

Allways, how are you? How are all the newbies?

Big hugs xx

Dear coffee - I want to echo what Bee and Mishtabel have said; the numbness is part of how we react, we cannot cling onto that raw feeling of grief even though we might want to - our bodies and minds will not allow it, for our own sake. And I think your Silvia would not want you to try and hold onto it either; she would know already that her mummy loves and misses her, and that would be enough.

As for being afraid of it being a dreadful mistake, I also found at our scan there were severe problems with DD's brain. Sometimes it is not due to a chromosomal abnormality, so do be prepared that the postmortum might not give this as an 'answer'. But in my experience, the sonographer took a long time over that scan, then got the consultant, and it was the consultant who very carefully explained the problems to me. They would not have let you end the pregnancy if they were not sure there was a severe problem; and your Silvia was facing uncertainty about whether she would be able to breathe etc. Certainly for myself, that is why we decided to end my own pregnancy, I felt I could not bear to watch my child struggle to breathe, or watch her die. But as it turned out, by the time we came to end the pregnancy she had already died - which was truly sad for us, but it did show me that although we can take this decision when we do, it does not mean our children would have lived - nature may have taken its course anyway. So do not punish yourself for taking the hardest, unwanted decision to save her from this suffering and to deprive yourself of seeing her born. xx

ah crap bezzy. Have no words to offer just taht I'm thinking of you. xxx

And hello to Gina, again sorry that you are here but you will find good support from people who understand.

Allways, Moneli, Babylily - thinking of you all.

Bezz - the only thing with answers is that sometimes the answer is 'not this', ie ruling out possible causes. However I would do the same in your position, speak to someone about genetics.

Bee and Mishtabel your words are so beautiful to read, you say things just at the right time.

Better go and get the day started... love to all.

Hello to all the new people here. So sorry for the pain you're going through.

Coffee, numb is very normal. I have spent a lot of the first couple of weeks after each of my 4 losses feeling a guilty over a strange sense of bravado or just nothingness. As my other half puts it, the emotions do just creep up and bite you on the bum out of nowhere. It can be such a rollercoaster that we are traveling on. I can also really relate to what you said about separately grieving for yourselves and the loss of your innocence. We have felt so angry at the fact that we are one of those couples that comes away from every scan, not grinning misty eyed over a copy of the scan photo, but utterly devastated.... AGAIN!

Bezzy, bloody hell, I'm so sorry that you're going through this again. It's heartbreaking isn't it, and exhausting, being knocked down over and over again. I know it seems like an ironic invitation given the title of the thread, but there are sadly a few of us on the sister thread doing through the same thing at the moment so if you want to come and join us for a rant.

Bee, I don't know if you had a different experience to us with the genetic testing. We were told that the final karotyping results from our CVS were all we needed to tell us that it was not a genetic problem with either of us and didn't have any further tests. They did say that there was little point testing the sperm or eggs because once they had tested the 'batch' tested were not going to be involved in conception and that the results for testing a new batch of sperm or another egg may come up differently anyway. They can never test the actual 'components' involved in the moment of conception. I hope I've managed to word that to make sense . In my case even after 2 miscarriages and 2 TS21 pregnancies they are still saying that bad luck/age etc are the most likely factors. But then in terms of pregnancy, Bez, you are a fair bit younger than me so it does seem dreadfully unfair that you are having so many sad experiences. I'm sure that you could be referred for genetic testing on the NHS. They tend to test after 3 miscarriages or more than one pregnancy affected by a trisomy as far as I can tell. I think I had to wait something like weeks from my referral.

Hi Ladies, I'm hoping that someone might be able to help with some experience or advise, I have posted and lurked on here since I had a termination for T 18 nearly three months ago. Today I've been referred to see a specialist for suspected Asherman's Syndrome following my termination. I am absolutely devasted and can't believe that after all this I now potentially have several operations and hormone therapy ahead of me just to try and sort this out. I can't help but think this is my punishment for killing my baby and that I'm never going to have another child. I just wondered if any of you ladies had experienced it following your terminations or whether this was just another one of those things in my long run of bad luck

Helenlouisey, that is horrible luck. It's not a punishment though, it's just a risk that comes with the termination - rotten, rotten luck for it to happen. What does the treatment involve? I know very little about it, other than it can be a consequence of a C-section, but I am very sorry you're going through it. As if what you've already been through isnt enough!

Coffee - and others - when each of my babies were born looking perfect, I was haunted that it had been a mistake. Of course it wasnt. I think it's only normal to be haunted by these losses, and by the decisions we were forced to make. It's crap though.

Genetics is complicated! I'm with Bee's LM here though - I am SURE there's something wrong with me and that my 2 apparently unrelated pregnancies with babies who wouldnt have survived are related in ways the experts dont know...

Bezzy, I am thinking of you, and with the newly bereaved. Take care, all of you. This is a sad period for our thread - Bee is right; it's a time we need to nurture each other.

Helenlouisey, this is really bad luck, so sorry to hear that. When is your appointment with the consultant?

Cantdo, I'm aware this is just me going mad, but sometimes my thoughts run wild and I can't control them, try as I might

Numbness gone, replaced again with terrible guilt, even if I try to reason with myself - I guess reasoning is the last thing I can do now and this is a phase I need to go through.

Thanks again and again for all your kind words xxx

Oh HelenLouisey - I can't believe it. I do hope you get an appointment soon. It's not something I'd even heard of before but a quick search on Mumsnet shows that some others have had it (esp after ERPC due to MMC or sometimes after Cesarean) so there may be other Mumsnetters who can give current advice. I've put links to a few resources here, if they help. It seems that Martianbishop had this, and then went on to have 2DC, so there is still hope (read down this thread).
Ashermans UK Yahoo group
Ashermans FAQs
other MNers experience
Hope this helps - and I really hope you can get diagnosis and treatment started soon . xx

HelenLouisey - I am sorry to hear that you have more upset and medical hullabaloo to manage. It just is not fair at all. I have not heard of this syndrome but the information that was linked in here implies that is solvable and that you must find an experienced physician. But nonetheless, it is very upsetting for you. So sorry.

Coffee, yes of course there is justification and expectation that you will feel sadness and disbelief at the suffering you and your DH have undergone. I remember having tears streaming down my face and repeating; 'it is just so sad'. That is all I could say. You are allowed to grieve for yourselves and feel the sadness for her too. It is so painful.

Justa; your words about the origins of suffering are so helpful. You and I have discussed this before here haven't we? I have grappled so much with the why. Now, with time, what do I think?
I think that somehow in the universe, there just exist different paths, different outcomes. When we try and make a baby out of love, at first, before repeated misery, we expect it to go as we wish. And sometimes it does. And other times it does not. And sometimes there is a bona fide, medical explanation and sometimes one can not be found (which is not the same as saying that there is not one). But our minds keep looking as we cannot comprehend why what we so very naturally desired and deserved was denied us. A healthy baby born out of love. Why can we not have it?
Sometimes we plant seeds in gardens; some flourish, need hardly any watering, bloom over and over again. Some never make it past seedling stage. Others bloom for a day, are beautiful and then die. I do not know why.
It is not linked to whether we are a good person or not.
However, I think it gets all wrapped up in our minds with the terrible decision we have made to end a pregnancy. That somehow, choosing to do this agonising thing means somehow we are culpable. So it makes sense in our recently troubled mind, that we are being punished, that we have been singled out.
But this decision has only come about because of modern medicine, hasn't it? We are offered tests, blood tests, scans, information. And out of that comes an enormous responsibility to make the right decision.
It is the most excrutiating agony.
We think of the baby's quality of life.
Of our family and existing children if we have them.
And all of the women I meet here, have so very intelligently, responsibly and agonisingly made the best worst decision.
It We are wracked with despair but in the end we have faced the maternal responsibility and, out of love, chosen to let the seedling, after having gently grown, expire.
It is very much not easy.
I have changed irrevocably.
I will never get over it.
I have less patience for silly, self-obsessed, non-intuitive friends.
But life does still have joy and loveliness.
So there may be a rational, scientific reason why some of us have so many losses, or there may not. There may be a spiritual one; but if there is I do not think it is personal but rather that suffering exists and must find its way somewhere. I do not believe that is true however.
I think human beings are fallible, that minds and bodies go wrong and that this is what has happened to me. I wish it had not, I wish my LM could be a father ( he is not the father of my children).
What will be will be.
I think I have reached some peace at last.
Patchy peace, but peace nonetheless.
Gosh, I have truly rambled but please do not feel anyone has to respond.
Night
Bee xxxxxxxxxxxxxxxxxxxxxxxx

Justa, & Bee...
Wanted to say that neither of you have rambled...both eloquent and clear as always.
I guess going through this makes most of us search for answers, and evidence of a greater design...but maybe the best thing would be to just try and accept that bad things happen to good people...
I definitely became more spiritual after our first loss, at the time I read a lot on buddhism and reached an uneasy kind of peace with the concept that we received this poor damaged soul in order that we could make the right decision for him, and let him be reborn elsewhere. The theory was that after death there are 40 days before reincarnation..at the time it helped a little to think that within 6 weeks he could be conceived elsewhere.
This time, I'm praying, fervently and frequently it's like a mantra...please give me a healthy baby (and in the same breath -to keep my other girls safe).
I changed as a person last time, it gave us the lifes too short attitude that has made our lives ultimately less stressful in some ways. this time I think it's going to be re-evaluating relationships. Saw a friend today, for the first time since it happened and within 30 seconds she had told me that I just had to look forward to our house move, start a new life and leave it all behind me! I will be haunted by my poor babies forever, the last thing in the world I want is to leave them behind. She also told me we shouldn't try for any more babies as we already had our two girls and she had a feeling it would not work out well.
I stayed a little while, almost silent, then left. I see this being the end of a long friendship, but it showed me that I had been right in isolating myself from RL friends.
Or maybe I'm just not ready to be pretending to be normal.
Still can't get the hospital to tell me the sex of the baby. The full CVS report is now sitting on consultants desk, but he is on holiday and no-one will tell me what it says. It seems so unfair. It's my baby, my report. Too worn down by the constant chasing to keep phoning. I just want to give my baby his/her name. It's 3 weeks today that we found out. It's too long.

Hi all,

I am breaking my self-imposed rule of not posting at night when I should be sleeping, but seeing as how I don't seem to find time in my very unproductive days I have no choice.

Bee, just wanted to say how I love your 'ramblings' - not that I would call them that though. You speak from the heart, that is clear. Many here feel as if they ramble occassionally, but I think it is often very necessary in order to get the feeling of what we want to say across. It's not exactly the kind of thread that would suit point form format! I am glad you feel you have found some peace. I was at the 'what will be will be/its in the lap of the Gods/leaving it to fate' stage before conceiving Bella. Now, of course, I thank heavens it worked out as it did, but had I not conceived, I truly believe I would have been okay. Surrendering to fate, or whatever you want to call it, took the heat off me. It is lovely to have you back with us, supporting those in need as always xx

Peanut, also thinking of you today (in the car, where I do lots of my thinking). Was remembering after I had lost my first girl, having a miscarraige a few months later. While I was sad, the overwhelming feeling was one of relief, as I had a feeling what I really wanted was my little girl back and that I had been trying to replace her. It took another year to conceive again. Although consciously I knew I couldn't replace my first daughter, I felt subconsciously I was still trying to. I was so scared that, once the baby was born, I would resent it when i realised it could never replace Sheridan. I hated it that people seemed to think that once the new baby arrived, I would be okay. In the end, my fears were unfounded. Day 1 I knew I loved dd2 in her own right, the thought of her being a replacement did not enter my head. When my MIL suggested dd2 might have Sheridans soul, I felt insulted on behalf of both my girls. It was more than enough that they were sisters. While I acknowledge the uniqueness of your situation, I just wanted you to know that some of the feelings/fears you have may be the same as anyone who has lost a child, whether or not the subsequent child is from the mothers egg or not. I hope you know what I am trying to convey, and that I am not saying I know how you feel, cause I don't. I think it's good though that you are acknowledging these very expected feelings now while your pregnant. Hope you're going okay xx

Think I have gone on enough. Time for sleep.
Bezz and all, thinking of you xxxxxx

X-posted with you Babylily. How frustrating re: your friend and the hospital. I think that is why alot of us seek refuge here, as we know many people in RL just don't get it and may say hurtful things, unintentional as they may be.

I quite like Buddhism too, lovely 'way of life'. However, I like eating meat too much to ever truly be one, unfortunately. The Dalai Lama's take on your friends comments would be that she gave you a real opportunity to practice tolerance and that she "tested your inner strength in a way even a guru cannot". That you remained calm throughout this encounter shows that you already have that inner strength. Well done to you xxx

Hi everyone,

Just wanted to pop in and say hello, and that I'm thinking of you all enormously.

Bezzy - I'm so utterly sorry, my love. As you may know, DH and I were recently tested for genetic abnormalities on the NHS after the hospital 'lost' the placental tissue from my pregnancy with Gracie. As this was only my second loss, they offered it to us as a kind of compensation (ha!) for their mistake - however, I am sure that with your history, you would be considered a priority.

Our results came back normal. Of course, we're both totally and utterly relieved and are back to ttc; however, it means I wholeheartedly echo the point about it being hard to get your head around the fact that 'you've just been on the receiving end of some inordinately bad luck'.

In fact, I tried to explain this to my girlfriends at the weekend who just looked at me like I was mental - I explained that had they found there was a problem with either DH or I, then my pragmatic nature would be to take the steps that needed to be taken to overcome it - be that through IVF or cell screening or whatever. However, as it is, we're just in the lap of the Gods again, which can be equally as difficult to comprehend. One of my lovely friends got it, but the one who frequently suffers from foot-in-mouth syndrome said I was crazy. God love her.

Anyway, sorry for rambling. On the whole, I feel like I'm in an emotionally 'good place' at the moment so am making the most of it, as I know all too easily how the darkness and sad times can quickly envelop us. Am looking forward to various plans I have with DH, starting off with a mini-break in Carcassonne in March. Has anyone ever been?

Gina - am glad that you found this thread.

Helenlouisey - am so sorry that you're having a rough time of it at the moment too.

To our lovely pregnant ladies - I hope you're all doing brilliantly.

Anyway, sending you all my love.
Viv xxxx

Babylily, that is so crap. When does the consultant return from holiday? And your friend... I've reached the conclusion that people just have no idea what to say, which is fair enough, but also they dont think very hard and so they seem to say the worst possible things. I've already mentioned my MIL. But my SIL has failed to congratulate me once on this pregnancy and has acted as though it's going to go wrong any minute. Which may be the vibes I give out, but I would prefer other people to be less pessimistic. I share your feeling of need to avoid people somehow after all this. I know I have.

Viv, glad you are in a good place right now. I have been to Carcassonne; it is beautiful. A lovely lovely medieval city. Bit touristy but in March that should be much less of an issue than it was when I went (August).

Bee, you never ramble. You write utter sense. I think after lots of thinking I agree with you - bodies are fallible, and things don't always work as they should. We might find out why (and how to put them right) or we might not. There may be a reason; there may not. We have to find a way forward to live with this. As you are doing...
I get what you say Justa. I am not sure I agree with all of it - probably because I don't believe the way you do - but I definitely get it. Thank you for saying it.

Hi Mishtabel. You're so wise too. Even in the middle of the night...

And hi to everyone else, specially Gina, Coffee, Allways, Bezzy, and Helenlouisey...

It seems that other people can be astonishingly thoughtless. To be told to, effectively, pull oneself together and get on with it is crude and shallow and unkind really.
I guess people who have been unaffected by tragedy have no grasp of how intensely vulnerable we feel. How shaky, how scared, how delicate and how small and private.
I remember that my last birthday one of my very best friends wrote in my card;
'Hope next year better than this year!'
That exclamation mark.
Exclamation marks are for irony and wit. My year has been remarkably unfunny. Let's see two terminations for T21 and a miscarriage.
Moving home is an enormously unsettling experience for anyone; especially after what you have been through recently Babylily. And how tortuous to not have the cvs results - seems so cruel to know they are lying on his desk. Surely someone could sneak a look on your behalf?

Re the genetic diagnosis thing; Kittens I did have full karyotyping back from my cvs. They still sent off both my bloods and LM's bloods to check that we had full set of chromosomes, no translocations etc. They were expecting the results to come back clear and they did.
Astonishing that your SIL cannot feel she can congratulate you, Cantdo. You are allowed to be negative and worried, everyone else in real life is supposed to support and cheer from the side aren't they?
Viv; I know exactly what you mean that it can be deflating almost to be given the all clear. It just leaves you in no-man's land; no clear diagnosis just a risk percentage. Is it comforting to know we have no genetic problems or is it more panic making to know we have no control over the situation? I do not know. Again.
But I am glad for you that you are trying for a baby; it is good to feel hope, good to continue and feel robust enough to do so. I wish you so much luck.
Sending enormous love to Bezzy.
Mishta - lovely to hear from you in the middle of the night; how is the little wee Bellaboodles?
Bee xxx

Hello ladies, I just wanted to say a quick hello tonight. No time to post properly I'm afraid, but I've read everything you wrote - as usual, very helpful and thoughtful.

Just to add that I only begin to understand how much some comments from RL can hurt. No one seems to get it that it's a baby we lost, that this is what is meant by "terminating the pregnancy". Everyone encourages us to look ahead and think about the healthy children we'll have. And yes, while I do hope we'll go on to have healthy babies, Silvia is not less our baby, just because her brain didn't develop properly and she was not born to term.

Anyway, we'll just have to learn to live with this and to ignore such comments. Funny, we always refer to the RL as opposed to this thread, yet I have to say this thread feels much more "real" than my daily life. I can't find the right words to describe this, at least not tonight, when my mind is just running around in circles and can't form a coherent thought.

Sending you all lots of love xxxx