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.

Well some news here? the hospital called back and it turns out I was not paranoid, the abnormalities were not found at the pm. We made a bit of a fuss, in a ?we want answers asap? sort of way, and we now have an appointment next week with the professor who diagnosed Silvia. He told the screening coordinator on the phone though that he is not surprised at the result of the pm, that he has had previous similar cases and that he stands by his diagnosis. He actually looked again at the scan images and said there were abnormalities and he will explain everything in detail to us next week. Apparently it has something to do with the type of cells and the changes within the cells, but no clear explanation yet. He is convinced he gave the correct diagnosis. I am so worried that if the pm couldn?t confirm these anomalies were there, maybe it was because it was all getting better?

So again, one more week to wait? I am ok one moment and in pieces the next, and I don?t think I?ll ever be able to forgive myself completely for not having further scans. I can?t bear the thought that we might have been wrong, and although I really try not to think like this yet, it pops into my head very often and it?s like someone kicked me really hard in the stomach. We did this thinking how much our little girl would have suffered, and ending her little life seemed the more humane choice. I need to hold onto this if I am to "recover".

Both dh and I are exhausted. My poor dh is the one who spoke with the hospital this morning and I don?t want to imagine what he felt like when told that the anomalies were not found at the pm. It was only later that they told him about the appointment next week and that there is an explanation for this.

Will this ever end? I am so, so fed-up and all these doubts are sucking away all my energy. And I am so angry that no one gave us complete information, and that it?s bit after bit, and everyone seems to believe all this is above our understanding. We are no medics and obviously rely so much on the doctors? expertise, but we have the right to have things explained to us properly.

Oh Coffee... how horrible to have your suspicions confirmed. But all this means is that the pm couldnt pick up the abnormalities, not that they werent there.. and the professor sounds pretty sure his diagnosis was right.

I suspect it boils down to what you said at the end there -- medical jargon. It doesnt change Silvia's prognosis, only the reasons that led them to it.

But I am angry for you. You so dont need this now.

I wish I could say something more helpful, but FWIW I am sure next week will confirm your decision was the right one. Horrible wait... but we are here... hugs.

Hi Drama and Allways and Lisbeth... Drama -- a 2WW?? wow.... keep us posted....

Oh Coffee . How awful for you and your DH. But remember, from the time of the initial scan/results there is a sense of working against the clock - you did not want to have to get an injection in order to stop Silvia's heart, so time was not on your side. And it's not always obvious/welcome that you can get a further scan by the hospital; I know I felt a bit surprised that they would do it for me, given the severity of the prognosis we were already given - it made me feel like I was questioning their judgement, and it's hard to do that sometimes with doctors (and even more so with professors, I suspect).

I really feel for you and hope that you can get through the next week as best you can, until you get to see the diagnosing professor face-to-face for some kind of conclusion on this. We ALL trust what we are told, and it's a hard enough decision to make anyway, when you are wondering if by prolonging things you are going to put your little one through more suffering. I really hope you get answers, complete answers, soon. xxx NM

Thank you Cantdo and Numpty. I just don't know what to believe. I have moments when I am telling myself that there would be no reason for him to say this just to reassure us, that it's very easy to get a second opinion and this is verifiable medical information. But I also have moments when I am just afraid that he might have been too pessimistic about the prognosis and by the time we terminated, things had started to resolve. But surely this would mean that they treated this issue lightly, and I doubt they would offer termination as an option unless it was really bad?

I just don't know....

Do you think ARC might be able to help with this, at least to tell me if they had similar cases of pm findings not confirming the scan ones?

It might help to give ARC a call. I think it would help if ARC knew of other situations like this, diagnosed by other consultants, and whether biology can show a severe problem in a scan that deteriorates quickly and is not apparent in a pm. When we had Iola, it did seem to us that sadly deterioration happens quite quickly after birth. But I think it would help to hear this from an independent source, not just from your professor...

Hi Coffee, just quick message to see if you called ARC and how you are doing. Thinking of you.

Hi Cantdo, I actually couldn?t call them today, I just couldn?t face explaining all this all over again, and to be honest, the main reason was that I am afraid of what they might say. I know I?ll have to face this, but I had no energy left today.

I am not in a good place, and getting through the days is such an ordeal. I am blaming myself so much for not waiting a bit more, and the thought that maybe my baby had a chance I didn?t believe in is torture. My dh is now quite confident that the professor was right and that there is an explanation for things not showing up at the pm, and tells me I should just wait until next week. I know he is right, but on the other hand I can?t be reasonable, I just can?t. I know Silvia was diagnosed by one of the most experienced clinicians, in one of the best hospitals, and I don?t have the medical knowledge I would need to judge this situation properly, but it?s just mixed feelings, reason doesn?t seem to have too much to do with anything anymore.

Do you know what they say sometimes, that the light you keep chasing at the end of the tunnel might be the headlights of an oncoming train? This is how I feel at the moment. Anyway, dh needs the laptop, so I?d better stop. Thank you for thinking of me xxxx

Coffee, my consultant said to us that she felt we were often given too much information which left us feeling like we had more control over the situation than we did, she said that it was all to do with the element of choice which the NHS has striven to give us, which is great in terms of being treated well but she felt it sometimes could make us feel we had more choice than we actually did.

It sounds like you are in good hands, and will be given all the answers and reassurance you need, and I suppose you can use this time to really work out what it is you want to know and where that need to know is coming from, what is driven by guilt and grief and what is driven from the medical analysis you've seen. If you can in any way try to separate the emotion out of what you're asking and be absolutely specific where you need assurance it might make the waiting and the meeting more bearable.

I really hope you're going to Paris this weekend, I know it's going to be hard to think of anything else but good friends and a well lit city might just help a bit. I think we all know it can be hit and miss what 'works' and what doesn't, but I'll be thinking of you and hoping you're and your dh are holding hands and smiling.

xx

Thank you mmt. I don't know if I should give ARC a call later today or wait until we speak with the professor next week. All I want to know really is why not everything was found at the pm, as those anomalies not found were the ones based on which we made our choice. But this can only come from the professor next Wednesday.

This time we'll write down his answers, not only the questions we have, because last time we didn't remember all the answers. Logically it seems so, so hard to believe that they would take this lightly, so I'm trying to hold onto that.

I've had a very bad night and dreamed that we went to the appointment and he told us it had all been a big mistake and Silvia was ok, and I woke up shaking.

We're off to Paris this afternoon, and will be back on the bank holiday Monday. I'm sure it won't be the nice, relaxing, let's get away from it all break we were hoping, but at least we don't have to pretend with our dear friends and there are no uncomfortable subjects, so to say.

I'm sorry for hogging the thread lovely ladies...

Quick message just to say I gave ARC a call and they were great. She said she hasn't heard of a similar case but this is because when it comes to the brain there are no 2 identical situations. However, she did say that the doctors tend to err on the side of caution and not offer termination as an option unless they think the prognosis is really bad, and she thinks they would have suggested further tests if they believed things could have improved. She has never heard of such bad diagnosis turning out to be wrong, and she agreed with me that this is verifiable medical information and it's very easy to get a second opinion, so the doctors are very cautious.

Of course I won't be reassured until next Wednesday (hopefully!). But it helped to speak with someone.

You sound loads better, well done ARC, I hope you can enjoy Paris. I'm hopefully going to Berlin with 9 new york ladies none of which have kids and i'm going to drink more than 14 units. xx.

Sounds like a lot of fun mmt, enjoy!

Hello to everyone else and I'm out of your hair now until Monday.xxxx

Well aren't we a bunch of jet setters this weekend! i'm off to London...not quite as far but will still be a nice break, Coffee you sound loads better ARC are truly brilliant they helped me so much through my dark days i don't know what i wld have done without them re-assuring me and talking me through things i didn't totally understand, and Paris! ooo la la very nice i hope you have a lovely time.
mmt u can have my units too as i'm too scared to even look at alcohol atm at least till i know if i'm pg or not, and on that subject i keep getting strange flutterings in the womb area could be nothing but am definatly not imagining it it's happened at least 4 times now and this morning i woke up with a taste in my mouth i can only describe as if i had slept with a spoon in my mouth it was horrible...in fact i still have it now but not as bad.Am trying to cross that bridge when i come to it but i'm so petrified that if i am pg something will go wrong again i don't feel ready to go through that again yet...on the other hand what if the baby is perfectly healthy? argghhhh! right i need to go and begin packing for me and DS....DP is a big boy he can do his own oh and June 4th is the day AF is due so i shall post that very day and let u know the outcome! XxXxXxXxX

Dramamama, yikes. In lieu of being able to do anything else to help, I will gladly have your units for you, consider it done. xx

Thanks mmt, your such a good friend sacrificing your ability to stand for me xxx

Coffee, so glad the ARC person helped. I really think this is all a question of medical terminology and it will be resolved next week - but it's really sad that it has come up. I am glad you can go to Paris to be with friends who know where you are coming from. France is a very curative place - just the food is enough to make me feel warmer inside. Please have a mousse au chocolat and a kir royale for me.

Tracy, Berlin sounds fab too. I recommend a glass of wine at the top of the TV tower - it is fantastic in the restaurant up there. Not sure about the food but the view is great and you can just have lovely wine...

Drama, I had the metallic taste in one of my pregnancies - cant now remember which but it was I THINK the third one - anyway it is definitely a pregnancy sign. Enjoy London and try to forget pregnancy for now...

Bee, thinking of you if you are around, and Mishta, and Allways, Brightongirl, Popsy, Viv, Gina, Babylily, Bezzy, Eulalia, and everyone really!

All those with impending due dates - I found the due dates less bad than the anniversary of the termination for my first lost pregnancy. The memories of terrible scans and termination really hit harder than the marker of a due date that was never more than a future hope, IYSWIM. But still hard.

DD1 had her first ever haircut today. She looks so cute.

Am struggling with writing DD2, because DD2 is really DD4. Hence always saying Babycant. I don't know yet what part my 2 lost babies will play in our family history, but I don't want to erase them completely. Anyway Babycant is thriving. She smiles now. She also grabs things... now, she just needs to learn to sleep...

Thinking of you all.

Hello

Another (mini) jet setter here as have surprise and still mystery (in terms of activities but I think one of them involves a spa) trip to the city with DH for my (40th) birtday which is tomorrow. We only live about 50 mins out of the centre of town (Sydney) but be nice to stay somewhere swanky. Am trying to embrace my birthday (I know that I have a 'surprise' birthday lunch with girlfriends on Saturday too) but its very tough, mainly as my birthday was the exact due date for my ectopic pregnancy and it felt somehow so right as I had always said that I wanted to be "done" with having children by 40. Anyay twas not to be. Then had wanted to be at least pregnant by time I was 40. Again it seemed right. Again not to be. SO. That is my little pity party for myself but will try and have fun and drink some of Drama's units for her. Somewhat amusingly though (and this is what you get with a man planning it and not realising until today), despite fact that DS is spending the night with my lovely sister in law a "romantic" evening is not on the cards as DH, knowing we were going to be in the city arranged for a sperm test (for the upcoming IVF) for the following morning (not realising that it requires abstinence for the three previous days!....

Coffee, I am so pleased you are still going to Paris and hope that you manage to have chinks of fun and good times in between the worrying. As you say it will be at least relaxing to be with such good friends with whom you are able to chat about everything. Thank heavens for ARC and glad that you found some comfort from them. I was speaking to some medic friends about the situation and whilst each case is different they echoed what the ARC people said about erring on the side of caution in these cases and working with medical facts when talking/recommending terminations, otherwise going for more and more testing. I hope that you find out the answers you need soonest though as the waiting on top of what you have already gone through seems unusually cruel.

Drama, gosh, good luck with the waiting and the outcome!, Can't, Babycan't is a fine name for now and I know exactly what you mean and hope that one day I will have a DC4 who is a DC2.

Everyone else hope your w/ends are good. I had such an awful day yesterday (long story so won't add to an already long post and try and put it behind me) that am hoping for some little bits of happyness myself. xx

xx

Scrum, happy birthday. I hope you enjoy it despite the inevitable bittersweetness.

I understand about the age thing too... but have gradually realized some of these pregnancy horrors arent age related. 40 is a fine age to have a baby.

Are you being spoilt for your birthday?

Good luck with the IVF too - start of a new phase.

Monkey - if you are reading, I was wondering how you are. Is work going okay? are you TTC again? if so, have you decided to take the megadose of folic acid that women here swear by? Hope you are okay.

Ditto Gina, who has gone MIA. I recall you were taking the megadose of folic acid. Hope you are okay too.

Morning all, Many happy returns Scrum. Coffee, I know you're already away, but hoping you can put the horror of the past few days in a safe place and enjoy your break. MMT and Scrum might need a detox with all those extra units (can you have some for me, as I'm in the 2ww too) Add me to the list of bank holiday travellers. DH and I are of to a cottage in Wales. We are looking forward to a little break with lots of hill walking! Scrum, my DH has a sperm test booked for ivf tomorrow. We too are hoping for DC3, who will be DC1. We're going to the clinic before setting off to the cottage. Monkey how are you doing in work? Please come here and let off as much steam as you need. Cant, babycant is a fitting name for your little one. Hello to everyone I?ve missed. Hope you are all doing good.

We had a meeting with fmu and our professor on Monday to discuss the Rose and Lillys pm results. The team at the hospital had a case conference and reviewed the MRI, scan and lab reports. We are so relieved to hear that there were no genetic / chromosome problems with the twins. There is no explanation for loosing Lilly. Rose had suffered a stroke, had enlarged ventricles on her brain and 2 cysts. There is no diagnosis why this happened, though one consultant suggested vanishing twin syndrome bringing on cerebral palsy type issues. Rose's brain was terribly damaged and although they could not confirm the extent, but they said her mental and physical ability would have been extremely compromised. I asked about mega high folic acid and low dose asprin, the professor said neither would have prevented this happening. He has suggested we use only one embryo at our next transfer. I have mixed feelings on this and still would like to give us that extra shot with 2. He said we should go on to have a healthy pregnancy and baby next time and hoped to see us both back at the clinic very soon. I hope so too, I feel very ready for another pregnancy.

Scrum,

I too had my 40th ten days after my termination. Such a strange landmark after such an intense and devastating experience, but it was so full of love - it sounds like yours will be too. May you feel cherished and adored. xx.

Hello ladies, I apologise for my absence, although I have been lurking.

Cantdothisagain you are right I have been taking the mega dose of folic and I have also joined a study that is being run at Great Ormond Street Hospital about NTD's where I also take either a placebo or a dose of Inositol (a B vitamin) that they are trying to prove will reduce NTD's that might be resistant to folic acid. I asked for the previous studies that they have done and they have proved it with mice and there have been 2 cases of women where they think this has meant that they have had a healthy baby on 3rd pregnancy. Its interesting stuff.

But today I had some very lovely news....a BFP! Very early days yet but we are staying as relaxed as possible and I am determined to try and enjoy pregnancy as far as is possible! We both are ready for this, it
feels like a turning opint in our year!

Coffee I really hope that you get the information that you deserve and that you manage to have a relaxing break away from RL.

To everyone that I have missed and to newbies sending my love.

G xxx

Congratulations Gina! some lovely news to lift the mood of the thread. Will you be due in January?

Allways, I totally get why you would want to give two embryos a chance again. And since what happened was random, that makes sense. Good luck with this. And maybe it'll happen this month anyway?

Imagining Coffee sipping wine on a cafe terrace, looking very chic...

Thanks Cantdo we are thrilled, there have been some tears and we have been through a rollercoaster of emotions today!!