support thread for women who have chosen to terminate II

[brightonbaby]

Erm, trying to create a new thread for us, ladies. Not sure if I've succeeded...

Hi Brightonbabes, it was me who asked about FB, what I did to avoid bump and baby pics, was to 'hide' the news feeds from those posters. Now I don't see any of them!

I'm glad that you and Kate have found each other, it's VERY hard for us to understand what you're going through, as we have our kids to distract us. I do have a tiny bit of understanding though, as my first pregnancy resulted in miscarriage, I know it's not the same and it was early at 9 weeks, but had worries that I wouldn't be able to conceive a healthy child.

Glad (and sad for you at the same time) to hear period arrived and was normal, it's been 3 months for me and still no normal period. Most frustrating. Who knows what my body is up to.

Bathroom not going well, and this sweltering weather is not an ideal time to not have a shower!! Poor chap doing it had an asthma attack on sunday night with chest pains so was off on Monday and taking it easy yesterday and today. Apparently, he'll have the bath installed for the weekend. Here's hoping, I have a friend here for the weekend!

DD's monitor has a thermometer on it, and it's currently 27 deg in her room. Madness. I'm camping on saturday night, so assume weather will have turned by then.

BK x

Hello people
Back again. Well Tree, have been whizzing around but No! usually I like to be smallish bee. The work takes me to places like here and Portsmouth - believe me - me no like.
Me rather be at home - the holiday to Swissland necessary part of recovery to be gently with intuitive lovely friend.
As for going out? Not that nice really.
Brighton - would love to see you. Golly how could we possibly sort that out - am back here quite soon in fact.
And also Tree have not decided. Have noticed that do not always take my folic acid - which I think indicates it not the most prominent thought- and feel so certain it will not work. But in back of head and heart also feel maybe in next two months i will succumb to the craving.
Brighton and Katerina - so glad you find this a comforting space - I do too. We all have such different experiences and lives but somehow are very tightly unified and thank goodness.
hello to lins. And choc pudding.And PF. Hello to you especially love. And Marj. And all of you who read and follow the story.
Out of battery now,,,,,,, she fades away.

Bezz - sorry darling forgot to wave to you. what is going on with the periods? Mine are very unusual too.
Capt C will be back on form soon am sure - is bittersweet is it not? You can give him a big gold star for his sticker chart.
And no bathroom! Boy oh boy. That not fun in this weather - are you camping in Edinburgh? blimes woman - what about the midges?
Horrid when they not here much though - same as me being away - the mind wonders off into the sad corner.
Off to nod off in the nod.
Night babes
ps - 3 months today since my termination I just realised. April fool's day. God. The first one was on Halloween. Am not even joking.

Evening all - You must tell where work sends next time Bee, there may be one of us around and about for banana cake and coffee! You may have and I may have missed it. Am determined to get back in the loop!

Wish I could offer some words of wisdom on trying, and not trying, and waiting. Can't. Can hand hold at best.

Night all. Harriet says hi, she is here as I post as always.

that's funny BB we share more than one date in that case. I got the results from the CVS on April Fools day.

Noo not camping in Edinburgh (thank heavens darn those pesky biting insects) I'm off to Edinburgh on Mon afternoon, camping near Wells just on Sat night.

Period schedule:
4 weeks after termination period (Bk thinks cool we're back to normal) period lasts total of 4 hours.

3 weeks later another period.

3 and half weeks later another which went on for about 10 days.

summary
who knows.

Hi all

Oh I wish we could meet up too. We could have a picnic with banana bread and Gu pudding and lots of vino. And squidgy cheese.

I am now 27 days since termination, but have endured more than a calendar month now since we found out the diagnosis, which makes me feel stronger (I've managed a month, can keep going now). No idea about periods. I told you mine went funny last time, but then I was still bf last time (ssshhh - shocked the doctors) and mine were horridly heavy for the first two. This time I suspect it'll be longer cos of the milk, etc. But I do want the period to come to have some semblance of 'normality' (ironic laugh at this point - what is normal after all this???).

Trying again -- well both my consultants seemed to assume immediately that we would, and without being asked both separately told me that this was freakishly unlucky and unlikely to recur. HOWEVER. I don't trust this odds business. Given my recent form, 50000 to 1 would be me. Also - I said I was calm - last night I dreamt I was pregnant and awaiting the nuchal and I woke up panicking so much. So I understand Busier - pregnancy might tip you or me over the edge. I guess you have to balance what would tip you most - trying or not trying. If that makes sense.

Murray - hmm, will check out girlfriend. Had thought she was a bit glam for him... The Roddick/Hewitt match was great yesterday. Maybe Roddick'll be too tired to beat Murray...?

Today, I presume it'll be the Williams sisters all the way.

nasty dreams Cant, and I suppose a glimpse into the future for all of us. I'm not sure how I'm going to cope with those 8 weeks between finding out pregnant and getting nuchal results. Already don't hold much hope for good nuchal. As have had 2 kids both high risk. Only the one actually being positive though. So suspect CVS will be on the cards again too. I'm now an expert on antenatal testing, having already had an amnio and cvs!

I've already been thinking about what we should do once we find out pregnant (which i know is terribly presumptuous seeing as it's a grand 4 days since we decided to try again, but have conceived in first month 3 times now, so really need to be prepared) Maybe you can help here Bee.

Do I
a) Have nuchal on NHS (I believe I can get on on NHS now I've already had a down's pregnancy) - am a bit sceptical of this one as I understand there's a lot of waiting involved between having tests and getting results

b) Go to the Nuffield in Bristol where I had my previous Nuchal and then on to NHS for CVS

c) Travel to London to go the FMC and get it all done in one go?

I'm inclined to think option C, but am concerned should the baby be down's again, where would I terminate?

Any suggestions?

Hi Bezzy,

Is the FMC, the foetal medical centre at Kings? That's where I went and so is my only experience. I can't say enough about how good they were with me, so, it is the place I would recommend to anyone. I went in at 7pm for the routine scan thinking everything was fine, and at 10pm they were doing the CVS on me It was fast, yes, but had I been left to go home and sleep on it, I think I would have been terrified of the CVS procedure and living in Brighton, would have had to endure the journey up again the next day. So, I was grateful they could do it so quickly. My situation meant that it was a pretty foregone conclusion that there was something seriously wrong. I know that other situations for other people mean they must debate whether to have the CVS or not.

It was such a foregone conclusion that, that evening, Nikolaides gave me a letter explaining that there was 100% chance (or as near to that as one can ever say) that this baby would not live to term and if it did, would be stillborn, so I didn't have to wait for the CVS results to make a decision about termination. Still, the powers that be in Brighton made me wait for the CVS results - 3 days - and then the Bank Holiday meant that I waited in total 8 days (a blur of time I spent in front of the tv and playing Monopoly with OH) for the termination appt....which then meant that it ended up on our wedding day (Busier - it seems events conspire to put this event on memorable days - I feel for you having to associate April Fools and Halloween with this). Not that we would have got married on that day after this, but still, it adds an extra dimension to the grief.

Sorry, I've just gone off on a tangent...Bezzy, what I wanted to say, was that I haven't enough experience to know what you should do. Only, that I was so relieved to be at Kings. They were so professional, they told me like it was, which is what I needed at that time, and I could sense their experience and expertise. I would definitely go out of my way to go there again. And the fact that they stayed back until past 10pm, when some of those doctors and midwives should have been going home at 7. I felt grateful to them for that. Although, I suspect that they wanted to see how it played out...I had twenty people in the room watching my CVS!!

Good Luck, Bezzy. I'm sure this one will be fine. Did you really fall pregnant 1st month every time? That's so great. Ours was first month too, so I'm hoping that wasn't just a fluke.

Cantdo. One month down. You are a very strong person. Has the milk subsided now? Hope your cycles normalise soon.

I take back what I said about mine...I spoke too soon...it's pretty much gone now. So, one and a half days! Oh well.

Thanks Brighton for that, yep pregnant first month 3 times. Even the doctor was gobsmacked when I told her. This last pregnancy was actually after just one 'session' as we weren't strictly TTC as i wanted my body to have a couple of months break after having been on the pill. But slipped up one night and oh boy I wished we hadn't.

Sorry for bringing up bad memories brighton, but where did you have your termination? Near your home or in London?

I'm beginning to think that should I get positive test then must make FMC appt immediately it's not too far to travel from here.

Now thinking, do I really want to go there again....know odds in my favour, but so so so so scared.

Glorious sun outside, but apparently there's a storm on it's way this afternoon. Hurrah, just in time for my camping trip on Saturday.

BK xx

I had it in Brighton. Another irony, actually. I can pretty much see the clinic from my house. I never knew what it was for before although a few weeks before this happened, I remember pausing on the street and staring at the sign for a little longer than usual...isn't that weird? I only remembered that after we found out we had to go there.

Of course, you'll be scared, Bezzy. But, it will be all right. Take a deep breath and take each step as it comes. The things we have experienced can only make us stronger, because, look, we are here and talking about it. You'll be fine.

I had a job interview yesterday and barely felt nervous, which is very unlike me. I thought, they're not going to stick a needle in my stomach and I'm not going to wake up without my baby...the worst that can happen is I might mess up a few questions, but big deal. I feel so much stronger in so many situations than I did before this all happened...well any situation that isn't to do with babies, anyway.

...and what's a British camping trip without a little rain

Yes, our experiences certainly put into perspective the 'little' things in life.

My termination (and I've never spoken about this before) was the most surreal experience. They had all the ladies show up at 7.30am that were having gynaecological procedures done that day, we all got marched off down a corridor and allocated beds. Except, there wasn't one for me. I got taken back down the corridor and given my own room, which I was very grateful for. But when I arrived at the hospital there was a girl and a guy walking in front Capt C and I, and what I can only imagine was a crazed boyfriend or relative screaming at the girl to 'not do it again' horribly unsettling, he came into the reception area and was kicking off, until they called security to take him away.

Good luck with the job Brighton, when do you find out? Are you allowed to tell us what the job is for?

Pity we're not all closer, I'd love to scoff some banana bread and guzzle some wine with you all xxx

Bezzy - gosh, your experience sounds like it was even worse than it needed to be, you poor thing. We're currently going through similar dilemmas about what to do in any future pregnancy. A bit different though as Kings is actually our local hospital. We hadn't originally realised how lucky (not right word, but hey) we were to have such expertise right on our doorstep.

For us, we feel like we need to have decided more in advance this time. Last time, as blissfully ignorant first timers, we had decided not to have the nuchal test done and just to have a scan for major abnormalities -however this immediately threw up the huge nuchal measurement even without them measuring it properly, and it all snowballed from there into detailed heart scans (showed serious abnormalities) and into CVS. In any future pregnancy, we're thinking we will have the nuchal and hopefully all will be well. But if it is high risk, then I'm just not sure about the CVS as right now, I don't think I could terminate for Downs again and live with myself. But equally, if we had the CVS and were diagnosed with either of the other two Trisomies, then I'm pretty sure we would terminate, as the outcomes for these are so much poorer. We were told last time that our risk level for T21 was 1:2 and for the other two was 1:3, so it's a real possibility. Even having been through it once, it's so hard to tell how we'd react a second time. DH says that if we had a second Downs diagnosis, maybe we should accept it as fate and go ahead, as we don't have other children to consider. A large part of me thinks he is right, but then I worry about how choosing differently a second time round would invalidate what we did before.

Such a minefield. In one way it seems way too soon after what's just happened to start thinking about all this, but equally, given that we are trying again, we can't put it off... And it's so hard second time round not to assume that everything will turn out badly despite what the docs say....

Can't: I couldn't tell friends about anything initially, certainly not during the first month following the termination, although DH had told one or two of his friends (mainly cos he had been so excited at the pregnancy and had "accidentally" told a few of them over beers before the 12 week stage). But when I got back from holiday, I suddenly needed my closest friends to know, if only so that they knew I was suffering, even if they couldn't really get it. But it really helped me to write it all down in a hugely long email - easier to do once and I really didn't think I could cope going through it face to face each time.

Hope all the banana breads/cakes are yummy! Might need to buy some bananas this weekend (and a cake tin!) and follow your lead.... Good luck with the job, BrightonBaby, and hope Sussex is treating Busier as well as possible. And love to all the morning sickness sufferers out there.

Love to all, Kate xx

Me too I find it really comforting and puts me back onto a better path when I talk with people who know what it's like.

That sounds very unsettling, Bezzy. There's a lot of 'marching' down corridors and being guided through doors, isn't there. My memories are a little blurred but the most vivid pictures I keep are of bland corridors, doorways and lots and lots of unknown faces. I had one incredible nurse who I hugged at the end of it all. She was so kind.

The day before the op, I had to go and register there and when we emerged, there was an elderly couple holding rosary beads and trying to give me a leaflet. I felt so angry and so, so anxious the next day when I thought they might be there again and I wasn't sure if I'd be able to hold myself back. It gave me something else to think about I suppose. But, how awful that you should have to witness that scene before your procedure.

I find out today, re. job, I think. But, tbh, I'm not sure I want to work there, so I'm sort of hoping I don't have the dilemma of whether to turn it down or not.

Hi Kate, what horrible dilemmas you do have. I completely understand the need to be prepared which is why I'm trying to come up with some decisions now.

Are your odds so high because you've had 2 down's pregnancies? (if I'm not mistaken) was it not just a case of bad luck, like with Bee?

It's really not fair that most people don't have to think about this.

I'm thinking of doing some baking this afternoon, fear will be size of elephant this time next week.

BK xx

Cross posted Brighton.

Have you seen Juno, great film, feared that the clinic would be like the one where she went, people protesting outside etc, luckily it wasn't!

I think I cross-posted...oops.

Kate, it really is horrible the things we have to think about now and the things we now know, that wouldn't have even crossed our minds first time around. But, we can only try and take each step as it comes and try to be as prepared as possible without traumatising ourselves further. I have to be optimistic.

oops, I did it again. I'm off into town before I do it again!! Haven't seen Juno. Off to the Pavillion Gardens for lunch with my OH

Ooh, think my last message was a bit confusing - typing can't keep up with brain! The 1:2 and 1:3 numbers were last time, after the scans showed nuchal and heart probs. Was first pregnancy and so only T21 termination. Hopefully risk levels will be lower in future, despite elevated risk having had one diagnosis. Agree that all we can do is be prepared as possible without traumatising ourselves - easier said than done but being able to post here and have people understand is so helpful in this.

Was thinking about Bezzy's comment last night about how Brightonbaby and I are in slightly different position as we don't have other children to help distract us from what's happened - was about to say that work has been a good distraction for me, then realised that spending lots of time posting here during working hours doesn't necessarily support this. Oops!

Back to work... K xx

Oh I see, am very relieved! I was under impression that future pregnancies had those odds! Phew!

minibez now in bed and have million things to do, so think I'll just sit and wait for tennis to come on....

and maybe compile a shopping list so I can actually put something in my fridge other than wine and cider (have developed a taste for the latter since moving to the West Country)

BK xx

Hi people! DD said something funny. She called DS, her sister. I said DS was her brother. Later she heard me talking about a sibling and she said DS was her bibling

Bezzy -- in this warm weather, cider is great! You now need to learn the words from that West Country band The Wurzels song, 'I am a Cider Drinker....'

Hi ilove!

I don't know that one! Are they the guys that sing about their combine harvester!?

Bristol is fab, really settling in, we had a guy in to do our plastering who sounded JUST like Justin Lee Collins, didn't realise people actually spoke like that!

Waitrose currently has 25% or something like that off their cider, so have been sampling loads...nothing better with a bbq!

BK x

I am a Cider Drinker

Just back from Waitrose -- 2 for 1 on laundry detergent.

Fantastic! Get that hair!!

I STILL haven't done any shopping...tesco online it is...

Back from work - just caught up and am not smiling to self about how days starts with deep discussion about trying again and ends with oh f**k it let's talk about cider - my lovers!
You girls.
God we would so love a day together 'on the sauce' and scoffing cake. Do you think we will ever?
Bezzykins - I know you like to hear it how it is. This is my opinion on the matter of where to have nuchals etc. With my first pregnancy last year ( not my real first one in fact as have three children) I was at a totally hopeless hospital to start with. Truly shambolic. I had my nuchal there and they were very encouraged. Measurement fine. Baby looks healthy- ah! look at its' little arm etc. Had an instinct though. They seemed inaccurate when measuring - slapdash somehow. A sweet mum at school suggested the Fetal Medicine Centre on Harley St - also Prof Nicolaides. I do not think you can refer yourself to him at King's but I may be wrong about this. The reason we went was that, given my age, I knew my risk would be highish. He is so very accurate and detailed in what he looks at however that we may have been given a very encouraging odds and that would avoid a CVS. I knew a CVS was risky.
Off we went the next day.
Do you know what is weird? I have shared so very much with you lovely women - so many details of my experience and feelings and meltdowns. But I cannot write about that day. It makes me cry even now. Just awful. Suffice it to say that the statistic given to me at the end of the nuchal was 1.2. They knew.
CVS next day - they do them on Wednesdays only. ( so good to book your nuchal for a Wednesday as then if worrisome news, can have CVS same day).
Test results take 48 hours.
Then - more trauma. Once we had finally heartbreakingly decided to terminate, where to have the procedure. First hospital so dreadful. FMC does not do. Had to research and deal with it all on my own. So hard.
Finally had it done privately at Hammersmith hospital. But the fact was not being looked after by anyone central and nursey was tough.
The service at FMC is very very professional. Can not fault them For all the women who have had dodgy odds from local hospitals - triple tests - etc - this place is a saviour. Like your friend Bezz. In my research it seems that the majority of DS pregnancies are diagnosed in women whose odds are between 1.2 and 1.10. Is that most of us? I think so. Not Marj though.
They look at markers so well. If you go on their website you can download an upsetting but crucially important lecture from Prof N on how vital it is that the nuchal done in the way he suggests.
Second time.
Oh this is so upsetting - but I want to tell you all. I feel that mye experience can at least help you guys to be more informed - but I am NOT expecting this to happen to you. I will not have it.
So I choose University College London. I know it is good. And it is. And they are supportive. I am planning to have my nuchal at the FMC however.
In the end the hospital's FMC is so spot on and supportive and experienced that I elect to have my nuchal done there. Prof N is coming to work there soon, their top guy is trained by him. It will be the top guy performing my nuchal etc.
It seems wise to keep the care continuous.
so my nuchal is there too. Seems like a nightmare now - I hardly think about it in the conscious part of my brain as it is all so impossible to comprehend.
All wrong wrong wrong. Ductus venus heart thing, bloody bloody nasal bone. I feel furious again even writing it. They had all told me would be okay - that it would not happen twice. We are devastated and I am so so very beside myself with anger. And I never get angry - I really do not.
The nuchal measurement was okay ironically.
Bezz -what I am saying is you need accuracy. You need to trust the hospital. Frankly you need the best there is if you are sure you will not keep the baby.
This hospital do not do terminations. Can you believe it? Although eventually I articulated my frustration and he arranged it there - although wish he had not as -if you have read my account of it you will know - it was diabolically handled.
Darling, in the end, we can pray for a healthy baby for you but I guess you must somehow ( you WILL somehow anyway) prepare a small part of yourself for the other option. All innocence spoiled.
I too have considered that maybe fate has decreed that LM and I will have a child with DS and if that were to happen again , how could I keep the child if i have destroyed the other two? How does that make sense? And all the reasons we had for terminating are still there.
If your local hospital performed your nuchal and cvs well and you were well cared for, maybe it is worth staying or choosing another good hospital nearby where you can have joined up care?
If the nuchal/cvs care not up to scratch, go to FMC.
Have worn self out now.
Off for lie down.
kisses to you all

Busy thanks so much for remembering all of that, now feel v guilty that I've made you uncover nasty wounds that were healing so well. SO SO SO sorry.

I think I've already decided on the FMC in Harley Street, mainly because I want the result of nuchal scan straight away and potentially CVS immediately.

Last time I had the nuchal on the tuesday and they managed to squeeze me in a CVS on the Friday, but it involved dozens of calls and much begging. I was v impressed with the NHS CVS though, professional, kind and ultimately sympathetic.

Just back from daily swim and shower at the gym and ironically, their showers were on the blink so had to have freezing one! aaarrgghhhh