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.

I'm really sorry - I meant to preview that before I posted it - I really don't want to upset anyone.

Hi Cherry and Flower, and I am so sorry that you have lost your baby girls. May Leila and Isabelle rest in peace.

In terms of genetics, it seems from reading on here most likely that they will confirm you have no genetic issues and that what happened was random bad luck. I am not sure I believe in said random bad luck, but it is better than being given a high chance of recurrence.

I have lost two babies in pregnancies to unrelated fatal conditions, the first chromosomal and the second developmental, but I also have two little girls, the newest born in April, so even random phenomenally bad luck can change - and it will for you, too.

Mystified, I just wanted to reassure your brother. My second lost baby was induced at 20 weeks without the injection to stop the heart as I was told that wasn't needed until later. My baby was stillborn, and I am sure your brother's baby will be too. I think they would warn you more about that if it was likely that the baby would be born alive. Some ladies here have had the fatal injection in the baby's heart before the termination, but I think that is usually after 21 weeks - the hospital would have suggested that, I think, if it was likely that the baby would be born alive, and your brother would have been given the choice. I think. But if your brother is worrying about this, I honestly think they need to ask when they go into hospital.

I had my own room too, with its own ensuite, and I hid in it throughout. DH went out to the hospital shop but I just hid. I couldn't leave. I think it helps to have a space where it all happens and then to leave that space.

A warning though - it is so so so hard to leave that baby behind.

They will ask if they want to see the baby and hold the baby. I did in both cases. The baby was tiny but it helped. They should also offer foot/hand prints and photos, and for a chaplain to do a blessing if you wish. I am unreligious but found I wanted someone to come and validate my baby's existence when she was born and the chaplain was utterly lovely.

Thinking of them; it is so hard, but, as Ghislaine said, after tomorrow is over they will breathe more deeply again even if the pain is still raging.

Mystified. i found nothing upsetting in your post. I have sent you a message. I hope it is of use.

Its good to be able to share on here poeople in the rw just dont seem to understand. I feel people expect me to be over it already.

Ghislaine You have a wonderful way with words, thank you for your wisdom. I can relate to the idealistic first timer, I think we got carried away with planning, christmas was going to be about buying baby things and decorating the spare room as nursery, it just all feels so empty now.

Cherry It is so hard, we do the best we can for our babies. I was told that Isabelle was incompatible with life, yet I still feel guilty for ending her life, and guilty that I could not give her all she needed to grow properly. I took folic acid for 10 months, gave up alcohol and caffine, yet it wasnt enough. It all feels so unfair.

Manitz - thanks - i've messaged you back.

Cant - Thanks for the reassurance - it's so hard for me to see my little brother like that - i wouldn't want to tell him the wrong thing, so hopefully that will put his mind to rest a bit tonight as he is sleeping so badly.

For me though i will never wish for a day to pass more quickly.

Flower, I have been through that guilt too. Not that we did anything wrong, we did everything we should, but it just wasn't enough to save our babies, and that makes us feel guilty. But we could never have saved them. And you are far from guilty. Isabelle was just too sick to make it through. That is so hard to say, and to understand, though, isn't it?

Christmas is hard-all those celebrations are. I felt a lot of emptiness too - a real flatness came after the anguish, and it was quite hard to navigate.

I think you just have to take one day at a time. And talk here, where people get it. In rl, as you say, they just can't. Which is a good thing in a way - it's good that our pain isn't shared by more people - it's just hard.

Mystified - just wanted to say Ive been thinking of you all today and hoping it all happens/happened very quickly for your brother & SIL.

All very sad on here at the moment. Just hope the light at the end of the tunnel is not too far away.

Ive had a freak out day today. After finally getting our letter on Saturday with an appointment date to see the Genetic Counsellor, I am terrified by what we will find out! And also, very worried that there will be nothing to find out as I have now convinced myself that the hospital didn't take a blood sample from Cara as they said they would.

Please, please, please can someone reassure me this isn't going to happen. I want to ring them and find out but I know I wont believe them whatever they say. I have already begun having nightmares that they tell us there was nothing wrong with her and that it was all a big mistake.

Also struggling with the fact that DH doesn't have the same concerns as me. I have no confidence in the hospital where we had to have the termination since all the stress of having to chase up results etc. I just want all this waiting to be over. It's been such an agonising time, it just feels like it is being dragged out. I want it all to stop, I want to know what I need to know and start to heal. After the letter arrived on Saturday I went into a complete melt down, and I thought I had been ok. How can a letter cause me to react like that? It was just giving us a date!

I want to ring the Chaplain who did Cara's service but Im too scared about how I will react. She asked me to call her after the service to see her for some counselling. But so long as I dont talk to anyone who is related to what happened with Cara, Im 'ok'. I still have bad days, but Im uncontrolable when it comes to anything that is directly linked to losing Cara.
This is why I want to sort everything out and get everything I need to help me 'move on'. I feel like I am dangling from a string, but I want my feet back on the ground.

Today has been a bit of a bad day for us. We still hadnt heard from the hospital chaplain about when the funeral will be and when we first met him last Friday he said the hospital would call the funeral place straight away and the funeral would probably be at the end of this week. Anyway we couldnt wait any longer and decided to call him today and he casually informed us that the hospital had only just called the funeral place and so we should hear from them in the next couple of days. He then told us he had annual leave booked for next week so if we wanted him to do the service we'd have to wait another week till he was back. We need to have the funeral asap so that we can try and move on a little so I'm not delaying it any more to accomodate his leave which he failed to mention he had organised when we saw him last week. It may work out better anyway, neither of us were particularly struck on this chaplain and thought his approach was pretty poor (the first thing he did was ask if he could bring a 3rd year medical student in to observe the blessing - erm sorry but NO!) so hopefully one of the other chaplains will be better. But it's not what you need, to feel you are pretty low on the priority list and we really shouldnt have to chase this up surely!

Cant - thanks for your words. I'm sorry to read you have lost two of our babies. It's lovely to see though that you have had a little girl in April - she will be at a great stage now and I expect bringing you much joy.

Natz - I'm really sorry to hear that you've had such an emotional blow today. I guess receiving your letter is a physical reminder of all you have been through and brings to the surface any doubts and confusion you've had about what you were told was wrong with Cara. I keep having those doubts too but I've been told the facts are the facts and they are not wrong. I guess we have to trust them. I'm sure the hospital would have taken Caras blood as they were supposed to and hopefully you will find out what you need to know soon and have the chance to talk it through with the experts. And then perhaps come to terms with starting to close this awful chapter and looking forward to moving into a happier place with Cara forever in your heart. I dont know, I cant imagine feeling like that at the moment either but thanks to this forum mainly, I see it does happen. I'm dreading seeing our geneticist too mainly because I'm expecting the worst in terms of me being a carrier. My OH thinks that I wont be and I shouldnt be worried so I know how it feels when you both have different expectations. But after so much bad news I guess I've just come to expect more. Good luck with your appointment.

Hope everyone else is doing ok today and thanks to all for your comments and thoughts.

I'm sure if you call the PALS people (do you have a dedicated caseworker you can call? We did and she was brilliant, even chased up the genetics counselling when it was clear the hospital had forgotten about it) they can arrange another better chaplain to do the service for Leila. The last thing you need is to feel that you have to accommodate other people's schedules - this is about you and your needs and they come first (in my stroppy opinion!).

And I'm sorry Natz that the genetics letter has upset you so. I can't tell you to change how you feel, but perhaps if I give my perspective it might help a little. For me I found just getting that letter reassuring on two levels: one, it was validation that our baby did exist and his problems (our problems) were being taken seriously by an expert, and two, I thought that even if we got the worst results ie that I was a down's carrier, that this information could be used to help us in further pregnancies (IVF and PGD I suppose). I did see the lab report when we booked the termination so I didn't think we would get anything else other than confirmation of those results. I understand what you mean about anxiety though - how can you be relaxed about what you are going through? Of course you are not.

Cherry, Im so sorry your Chaplain has been so useless! We had a similar experience with Cara. The Chaplain was on annual leave when we were in for the termination so I didn't get to see her, and could not remember anything I had been told by the doctor with regards to the funeral arrangements. A few days later I was on the phone to PALS trying to find out what was going on and pulling my hair out with the fear they had done the service without telling us. PALS were very sympathetic, and totally useless. They had no idea who to contact so were waiting for a woman in a department to come back from annual leave to find out who they should contact...... .

I got so stressed out I booked in to see my GP. She advised ringing the ward to chase it up that end, and they gave me the Chaplains number. As soon as I spoke to the Chaplain, I was totally reassured, although we had to wait 4 weeks for her cremation as they only did it the first Thursday of the month.
I found the Cremation was a massive release. The pain, the fear, the regret, the guilt, the utter despair just came pouring out. I felt like I had been at bursting point on that day, and I have no doubt you are feeling something similar. It was a difficult and heartbreaking day, but it did help release the emotions.

I hope you are able to get things sorted as soon as possible. I found that the hospitals have had no interest in us since the termination. Ive spent 5 weeks chasing the appointment with the Genetic Counsellor. Our referral sat on a desk for 6 weeks waiting to be typed up and sent off. And when they finally sent it, they sent it to the wrong place. If I had not continued chasing it up, it would still be sitting in a fax machine somewhere whilst somebody decided what to do with it! I have very little confidence in the hospitals that have been dealing with us. Am very grateful that we have now been referred to Guy's in London.

I gree with Ghislaine, get hold of PALS (hopefully yours will be better than mine were) or speak to the nurse/s who cared for you during your stay to see if you can get another Chaplain to conduct the service. I understand that everyone needs a break from work, but you sort out what needs to be covered before swanning off. Especially in his position, the patients need to be properly taken care of.

Thanks for your comments Ghislaine, we too were shown the prelimary report from the CVS and this is what has got me worried. Cara had Hypoplastic Left Heart Syndrome as well as other major heart defects which was the reason we had the termination, as we were told she would die of heart faliure before birth. But she also had Turners Syndrome. On the report it said 'mosaic Turners which could be localised to the placenta.
We have never recieved the full and final report which checks all of the Kareotypes (not sure if that is how it is spelt). The consultant we saw before anything happened told us they would take a blood sample from Cara to determine whether or not she had Turners. We have never had these results either. Also I need to know why Cara had so mant other heart defects on top of the Hypoplastic Left Heart.
When our letter arrived, it had a return slip which we needed to fill out stating who in our family had a genetic disorder and what that disorder was. Surely they should know this if we are going there to discuss results??? Im so upset and so worried that no bloods were taken and we will never know for certain. I know in the grand scheme of things that the Turners is irrelivent as the heart condition was the fatal condition, but I just need to know.

Sorry for the major rant ladies. Just needed to offload some of that fear xx

Hi Natz, my girl had hypoplastic right heart plus 4 other heart problems including transposition of the great arteries, a narrowed aorta and large pulmonary artery and a VSD. I think there were a couple of others but can't remember them offhand. It was just 'one of those things', she had by coincidence a balanced transposition. Because of that they asked me and dh to have blood tests to find out if that was also 'one of those things'. They foudn that he had the balanced transposition and we have since found out that his brother also has it.

when i had the cvs results for my boy it said at the bottom the thing about down 'could be localised in the placenta'. I assumed it was a coverall in case they got it wrong which i think is very very rare. I tried to ask about it but found any answers at that time very very confusing. It was irrrelevant to us anyway as we made the decision based on the hydrops.

If you want to speed things up and if they haven't done so already then get them to do yours and your partners bloods and make them do a genetic analysis on you, in advance of the genetic counselling. The decision you have made is done and having made a similar decision without turners I would focus on the heart condition as the reason you terminated. If they haven't already taken your bloods you could end up having your appointment where they suggest they take your bloods and any answers will be delayed further. the principal thing you need to know from the genetic testing is if it will happen again. From my experience you can't know that but you can know if you are taking an overt risk with a future baby's life.

Sorry for such a long message but i think it's terrible but endemic that we are treated as a medical issue. Once the medical side is over we are no longer a priority yet for us it goes on. I understand why though but it doesn't help the emotional side.

I meant to say that last time I was plagued with doubts about the diagnosis. i have a box with photos, scans, stillbirth certificate and all the reports and correspondence in it. In the early days I was able to dip into it and reassure myself that it was true but also to put it away later on so that i was no longer dwelling in the grief but choosing when to grieve and remember.

Thank you Manitz, and sorry that you had to through all of this too. We also made the decision based on the heart conditions, we were told that on top of HLHS she had servere stenosis, which (in my understanding) is the start of heart faliure, the GP told us that this is usually found in the elderly. She also had a narrowed Aortic valve, blocked mitro valve and regurgitated blood flow. I read the report every now and then to try to understand, and as you said, to reassure myself that there was a problem. The leaflet said we would probably have blood test at the appointment.
Im feeling quite possitive about the appointment at the moment. Ive sorted the childcare for our 2 DD's. Nothing will ease the pain of losing Cara, but understanding why will help me accept that we had no choice. I just need to know we didn't make a mistake, this is cutting me up inside.
Thanks for listening, and thank you for words of advice and comfort x

I'm glad you are feeling better and I hope the appointment goes well for you. i misunderstood and thought you had said they hadn't taken cara's bloods and I wrote my response thinking you may not find out what you wanted. i've just reread and now realise that you were just worried that was the case. i'm sure they will have done it and i'm sure you will get some answers on the day. As you say, nothing will ease the pain but it may help to understand the level of the problem.

I really feel for you, you are in just the same situation I was in 2 years ago, your daughters are even the same age dd1 and 2 were then. I know i have come on this board because I've had another blow but I have to say that I have been incredibly happy over the last three years and when ds was born one year after my termination it was absolutely amazing. i didn't think I would ever regain such a level of happiness but it does take time. take care x

Thanks Manitz, it is reassuring to know that it gets easier. And I am so sorry that you had to go through two losses. I hope you are doing ok. How are you coping being back at work? x

Reading all your messages reminded me just how tiring the bureaucracy is that comes with losing babies. It sounds stupid but I wonder if receiving letters, going to see consultants, arranging funerals, those practical things, are easier to vent emotion over than the loss itself in some ways because the loss is so big, it's hard to conceive of it somehow. I panicked when I got the letter telling me our results were in and we were to see the consultant. I hated sitting waiting to see him, too. The appointment itself was okay. It's all really tiring, isn't it?

It does get easier, as Manitz said. Your life changes forever but you do become happy again. That sounds v trite but it is true.

Wanted to do a shout out: how are LisbethSalander and Peanuthead and Allways? and anyone else?

We now have a date for the funeral - next Friday morning. We can go and close the casket on thursday night and put in a photo of us. I am longing to see my little girl again but scared of how she will have changed. Part of me wonders if I shouldn't see her and remember her as the perfect looking little baby she was when she was born. But I'm worried if I dont see her again I'll regret it. Impossible to know what to do for the best.

I'm also worrying about the funeral. We thought we should probably keep it very small and just have our parents there and my OHs two siblings (I have no siblings). We asked my mum and his parents and got a non committal response, I think they all feel unsure as to whether they want to be there. We havent asked OHs siblings yet but he thinks they may not want to go. So now I'm worried that noone wants to go at all and it will end up just being the two of us and Leila wont be acknowledged by the rest of the family. And that hurts a lot.

Hi, Can't I agree but also I am finding that I am generally fine but one tiny thing goes wrong (at work, with my current building work, an extra letter from school) and I cannot cope at all. Equally admin errors which are specifically to do with the loss of the baby or dealing with the hospital must be even worse. I think it's always there but you aren't always aware of the stress it causes.

Cherry i hope the funeral is alright next friday. Just because people don't attend I'm not sure that means they wont acknowledge her. We had a private funeral, just the two of us. It's strange but I even put on a 'coping' front with the rest of the family and i don't think I could have properly said good bye with them around. x

hi all - I've been reading but not posting for a while. I had a bad patch about a week ago as it was 6 months since Adam's birth but in some ways I can feel things getting better and feel time slowly but surely coming between me and then. I'm finding I'm better able to refer to Adam - I find mentioning him to family and friends help particularly if I feel people don't or haven't ackowledged him - it's sort of like saying yes, he was here and it's ok to talk about him and let's not just brush his existence under the carpet as he's important. I think some of my family probably wish I'd just stop talking about him as they'd see that as progress - I'd be over it if I stopped talking about it. Whereas I think the more I talk about him the better.

Hi to all the new people - I'm so sorry you've found your way here and hope you're being kind to yourselves and taking it slow. I found that I just hid away from anything or anyone I couldn't cope with - and that was most things and people and even now I find I'm not able to deal with a lot of people. I also find I'm not able to feign interest in people's trivia - most things just don't seem very important to me any more - not in a bad way, but in a I can see clearly that there honestly is very little that really matters.

I was also going to say to Cherry that you might want to read back a bit to my posts in July/August. Adam had a rare form of Downs (about 3% of all Downs suffers have this). It's caused by 3 copies of chromosome 21 produced by an unbalanced Robertsonian translocation. We were told there was a chance that DH or I were carriers and then had to wait 8-9 weeks til we found out that neither of us are and that the translocation occurred in Adam de novo. I think I'm right that it was a rare translocation in Leila and so I guess googling for info hasn't been much use. Have you tried contacting Unique - the charity which deals with rare genetic issues? I found their info v useful - for example I could see our chance of one of us being a carrier was about 25% - maybe they can help. ANyway, sorry, I'm rambling as usual but I also wanted to say good luck for Friday - I hope you find peace.

love to all xxx

Just a very quick stop in to say Cherry, will be thinking of you on Friday. We asked people not to come to Cara's funeral as firstly, as it was a communal funeral we assumed other grieving parents would be there and didn't want our relatives intruding on their grief, and secondly we didn't want to have to 'be brave' in front of anyone.

As it turned out, we were the only parents in attendance, which I found very upsetting. I went to my newborn niece's funeral last year and although I wanted to be there to support my sister and my brother in law in their loss, I also felt like I was intruding on their grief. If you really want your relatives there, let them know it would help you cope with the day if they are there, they may be unsure if they are doing what is best by you in attending.

At Cara's funeral, having my DH with me was all I needed in terms of support, although I felt like we had cheated Cara out of a farewell by asking people not to attend. My DH said to me afterwards when I told him how I felt, that there are a lot of people grieving for our baby, and that their mourning took place when she left us. The funeral was just for us to say our final farewell to our baby.

I hope it goes as well as possible. Will be thinking of you xxx

hi, it turns out we have our communal funeral on thursday now. I thought it would be last tuesday in the month but they have an extra one this month (bit sad). Cherry I hope you get what you want from yours and are able to say goodbye to your baby. x

Hello everyone, just wanted to say a quick hello to you all; the new and the old, and to say you are all still in my thoughts. Sorry for being such a sporadic poster these days, but I feel I can be of limited help, as although I would never forget my experience, it is hard to accurately remember at times the depths of sadness of those early days. That first year, especially, is so hard. It's so nice to see many of you over on the other thread, whether it be you are pregnant, trying or just thinking about trying.

Cherry, with regards to seeing your baby or not, although it is such a personal choice and no one could advise you either way, in my experience and what I have gathered from others, it is more often the things we don't do that we regret, rather than the things we do do. If you are worried about what she may look like now, perhaps get someone to describe her for you before you see her (if you choose to do so), so you are prepared. Will think of you on Friday xx

Thoughts will be with you too, Manitz, for Thursday xx

Love to you all xxx

Manitz, I will also be thinking of you on Thursday. It is a very difficult day but it really did help me. I hope the same goes for you.

We have the Genetic Counsellor of Friday, it may sound a bit harsh, but I am looking forward to shutting this chapter of my life. I will never forget our little girl, and will always wish things had gone differently, but I need to get past all the raw emotion.

Love and strength to Cherrybug & Manitz this week, we will all be there with you in thought, and with your darling babies xxx

I understand why you want to close this chapter. I feel the same about the funeral. hope Friday is illuminating. x