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Original poster

not good news

50 replies

learningtofly · 19/04/2011 10:49

Hello. Been on MN for some years but first posting here. I have namechanged because i do know people on here in RL and I am not sure yet that I am ready to be outed.

We found out yesterday that I am pregnant for the 2nd time. We should be over the moon but this is possibly my worst nightmare.

For years I have taken some pretty heavy duty medication for a longstanding health problem which I had to stop for a certain period of time before I got pregnant with my ds. They recently changed my meds to a new, slightly experimental drug (the long term effects are not really known yet) and pregnancy is an absolute no.

Ive been to see my consultant today and although he will contact the drug company and NICE we have been told to be prepared that they will advise not to continue with the pregnancy.

Please be gentle - I geniuely cant believe this is happening, we have always been so very careful so not to be in this situation and now here we are.

Any advice would be very gratefully received.

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MumInBeds · 19/04/2011 10:58

I'm so sorry to hear you are in that situation, it must be very painful.

It's hard to give advice, hopefully the doctors can advise you about the risks.

How far through the pregnancy do you think you may be?

Original poster
learningtofly · 19/04/2011 11:03

I think I'm about 6-7 weeks. Tbh I think me and dh are still in shock. I just dont know really what to expect.

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Cinnamondog · 19/04/2011 12:25

learningtofly, that is an absolutely awful situation to find yourself in. I will keep everything crossed that the doc comes back with some positive news but, if not, then there are a lot of us here that have been in very similar situations. We'll help you through as best we can, and will keep reminding you, this is not your fault.

So sorry you are stuck in limbo land now, hope thay get back to you very, very soon, take care xxx

Original poster
learningtofly · 19/04/2011 12:50

thank you cinnamondog after this morning we are expecting the worst, the consultant said he was 90% certain that they would advise us to end the pregnancy. I cant believe how slowly time is moving today - i feel like i am moving through syrup.

In someways I am hoping they will caterogically make the descision for us - I dont think I could bear it if they left it up to us to decide. God I feel like my heart is breaking :(

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Cinnamondog · 19/04/2011 13:05

We were given no choice with our little one, (lost her at 13 weeks by TOP), as she was just too poorly to have survived even a few more weeks of pregnancy. It does not make things any less heartbreaking, or our pain any less real, but knowing we really had no choice at all did help with coming to terms with everything, (though I still managed to feel guilt, the Catholic/ Jewish background maybe?).

TBH, no one on this thread had a choice, all the mums here who have had a TOP have been backed into a horrible place and a horrible decision by circumstance, looking after the family, looking after their own sanity, etc. I know it's heartbreaking, but please don't blame yourself. And there is still 10%...... hang onto that to get you through the initial shock. There is still a chance and I am praying you get the good luck that by passed me! Stay strong, people are thinking of you xxx

Original poster
learningtofly · 19/04/2011 15:36

sorry i didnt mean to imply that anyone makes this choice iyswim - i'm a bit all over the place and cant make my words come out right. I swing between floods of tears,(the world is ending) and it'll be ok, we'll get through this.

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Cinnamondog · 19/04/2011 15:51

Oh dear, you didn't imply that at all! Sorry, think it's me that can't get their words right. Just wanted to make sure you knew you are absolutely not to blame for any of this or any decisions you have to make, as I know guilt is one of the main things that mums' here battle with.

But you are right, you will get through this. You'll find strength that you never knew you had.

Still crossing everything for that 10%, take care xxx

misty0 · 19/04/2011 16:56

what a horrible situation to be in learningto fly. The waiting is unbarable - i know, but you WILL get through and cope. I have discovered a strength i dint know i had, and you will too. I'm no expert, but in this situation i dont believe they'll leave you hanging with a chioce.

Try to occupy yourself with something mindless and easy while waiting. I confess i began watching terrible old 70's stuff on daytime tv.....

Keep us informed, and we'll be right here - whatever happens. cinnamon is right, there is hope still, let that thought help you.

xxxxxxxxxxx

Kat143 · 19/04/2011 17:13

Learningtofly, how absolutely awful for you. All I can say is you really do adapt to the waiting in ways you never thought you could. Cry when you feel like it and find someone to talk to - I can highly recommend the lovely people here.

I have some knowledge of drug trials and the 'Don't get pregnant use double contraception' clause is pretty standard regardless of the actual action of the drug. The pharma companies don't want you to get pregnant as they're very scared of litigation in case of future problems (and also you'll mess up their data...) but it might be that your particular drug doesn't actually pose a huge risk.

Finger crossed for you and keep us informed.

tiokiko · 19/04/2011 18:29

What a horrible situation, so sorry to hear this.

I really hope they can get some information to you quickly and you don't have to wait too long to hear back.

Fingers crossed they are being super-cautious and you get some good news.

linspins · 19/04/2011 20:46

Hello learningtofly, I'm really sorry to hear your news, what a shock for you, and how awfully sad too. I was struck by your words "swing between floods of tears,(the world is ending) and it'll be ok, we'll get through this." In a way, I know it feels like the world really is ending - or at least the one you know. I remember that feeling of having a rug pulled from under your feet and not knowing what is coming next. I wanted to add though that your feeling of "we'll get through this" is right too. Whatever is ahead for you - (and I really hope it's good news,) you will get through it. And lots of lovely ladies will be here whenever you need.
Thinking of you. xxx

Original poster
learningtofly · 19/04/2011 20:53

thank you for your replies - it means so much to me.

Without wanting to drip feed (can you tell I hangout in AIBU alot) I need to be carefully about being identified on mn - there is someone very close to us who has had a terrible time ttc and I'm not ready to tell them about whats happening - it would break their hearts and I simply cant bear to do that to them. I think thats the hardest part - the unfairness of it all

Anyway the drugs I have taken are fairly new and not standard presciption. They work by combining proteins and slowing down cell growth and reproduction and lowering the immune system - from what I've looked at on the internet there is little information on what the effects on pregnancy would be - it might be that they simply dont know and I'm not sure whether I can bear being a guinea pig.

Whilst we are trying to stay positive deep down we are resigned to the fact that we are likely to lose this baby now or further down the line which would just prolong the agony. We should (hopefully) find out more tomorrow but it looks pretty bleak tbh

I will keep posting though

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linspins · 19/04/2011 21:07

I understand when you say you'd rather they confirmed the worst than left it up to you - sometimes it's easier to know what to do when it's a worst case scenario, than a situation which is many shades of grey. Hope tomorrow speeds by and you get as much information as you need. xxx

Original poster
learningtofly · 19/04/2011 21:19

i never realised time could move so slowly - today seems to have lasted for ever

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Original poster
learningtofly · 19/04/2011 21:25

and we are kinda hoping tomorrow will definately bring news - if it doesnt it might mean even more waiting and I'm really concious about all these bank holidays coming up

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Original poster
learningtofly · 20/04/2011 09:26

Hello everyone. Early morning news is never great.

There is no news from the tetralogy people but the drug company have responded very quickly. It makes pretty horrific reading. The advice is definitely not to continue and as awful as we are feeling right now I think we are going to have to take this advice.

I am quite calm at the moment but there are still mountains to climb x x x

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MumInBeds · 20/04/2011 09:30

Sorry to hear your news but as painful as it is it sounds like you have no real choice if the advice is so clear. I hope this isn't an awful thing to say but I hope you can get some comfort from not having a real decision.

Thinking of you.

Albrecht · 20/04/2011 09:32

So sorry to hear this. It sounds like it would be the kindest thing to do rather than the alternative.

Wishing you lots of strength.

Katiebeau · 20/04/2011 09:39

Hello Learning to fly. If the drug is very new/in clinical trials then there is likely little in the public domain. However to even enter into clinical trials and be used in women of child bearing age they must have completed reprotox studies, mutagenicity etc. They will know (sounds like you have the info too) if there are clear signs of a problem with the drug re reprotox. Drugs for difficult to treat diseases with serious impact on people often have these issues as it so hard to design out the issues and keep the efficacy, often what causes it to work also causes the issue.

I'm so sorry you have to go through this. It isn't your fault and no one should judge you. Thinking of you and DH.

Original poster
learningtofly · 20/04/2011 11:50

just a quick update as things are have moved along. I've been to my GP this morning and my consultant faxed a letter across for me so I didnt have to go through the whole story.

She was very kind and understanding and has referred us for a termination on medical grounds. We still have to go to the initial appointment for a scan and discussion although she did conceed that really there were no choices to talk around for us. Unfortunately because of all the bank holidays we have to wait until the 9th May which seems forever away. I just hope that it will still be classed as early termination (I'll be 9 nearly 10 weeks by then)

Atleast though we know whats going to happen now and we can start to begin to pick up the pieces and work towards to the future.

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tiokiko · 20/04/2011 12:13

Really sorry to hear you've had this confirmed Learning.

I'm glad you got the details quickly and have been able to see your GP already but wish you didn't have to wait for so long for the next steps - is there no way your consultant could pull any strings for an earlier appointment?

Look after yourself and take it easy over the next couple of weeks, will be thinking of you.

Original poster
learningtofly · 20/04/2011 12:23

thank you tiokiko. They were really good and did try other local hospitals to see if they could get us an earlier appointment but nothing before the 9th unfortunately.

I do feel much more able to come to terms with it all knowing that atleast we have a plan of whats going to happen and it has been much easier to take in because the advice has been so black and white and the desicison has pretty much been made for us and taken out of our hands iyswim.

I dont doubt that the next few weeks are going to be tough but we have something to aim towards unlike yesterday when things were really up in the air. One thing I have learnt is how fabulous an actress I would have been - the professionals we have met have all said how brave we are when inside I am crunbling to pieces.

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Cinnamondog · 20/04/2011 12:37

You might be crumbling, but they are right that you really are very brave. That you have been able to come here and talk about your experience shows what strength you have. There will be bad days, there will be worse days, there will be hell on earth days, but you will get there.

Be kind to yourself, take care xxx

Original poster
learningtofly · 20/04/2011 12:42

i dont feel very brave, bit detached at times which is how i normally deal with crappy stuff (head in the sand job). I keep closing my eyes hoping that i will wake up from this nightmare

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misty0 · 20/04/2011 16:39

learning - i keep wanting to say something but dont know what to say!

I had a termination last Monday, at 13 weeks, and the procedure itself was the the least worst part of the whole thing. As you will be 9 weeks your procedure should be 'easier' still. I had a 'surgical' termination. A 'gentle suction under general anasthetic'. I think yours will probably be a 'medical' termination tho', as its earlier. I'm sorry if i'm not helping ... i just remember wanting to know as much as poss.

I'm saying this because i know as the realisation started to sink in - i began really worrying what would happen next and how on earth i would cope.

You WILL cope I promise xxxx

Awful that you have to wait till 9th May. I found the wait a kind of limbo - very sureal, where at times my OH and i behaved perfectly normaly - like there was nothing wrong - laughing at the telly, joking with the kids..ect. and those times are precious, because they keep you sane. Many deep down times too.

Stay with us here as we can try to help in any way we can. There are lots of ladies who can answer questions that might pop into your head (better than me hopefully) or just be there when you want a rant or rage. Thinking of you -

Take care xxxxxxx