support thread for women who have chosen to terminate

[busierbee]

Hello
Busier Bee here - I felt that before I went to bed I wanted to open up officially a new place for weary travellers of those on the road that we have chosen to rest our heads, muse, sob, moan and support each other.
Also the kind, compassionate souls who have not been there but who offer their support and lend an ear and pass a gentle word.
We have chosen to be here and we are here and we are not alone.
Thank you so much all of you -for I personally do not know where I would have been in the last few weeks without you all.
Night - sleep well
kisses and thoughts
BB xx

Thank you Bezzy - oh my - I did not take folic acid before conception - started once I knew I was pregnant which effectively is too late of course since the fusion has taken place.
Let's do a thread survey - what did you do Bezz?
Would imply really that is worth taking folic acid for three months to build up store in body from another article have read.

This is a taken from a medical journal and the language is a little more troublesome. DH is a medic and he had to translate for me! I take 5mg folic acid a day and a hefty dose of B12 too. This is not to spook anyone who is pregnant and didn't. It is only a suggested link and may only affect a tiny % of women who have had T21 pregnancies. But it's certainly worth a read.

www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1168873

The bit about folate/supplementation is section 4.

Hub out on call at 3.30, hence the disturbed night!

Hello ladies.

Sorry I havent been on for a while, but the PC had some sort of breakdown

Re: "trying again". As you all know, I tried a few times!!!....and each time when things went wrong I told myself it was the last. Too much pain, too much heartache, too much guilt.

HOWEVER... something in my brain, hormones, heart, soul....call it what you like, would not let me give up, even when I knew it would be the most sensible course of action, even when people told me I was mad to be even considering trying again (very helpful MIL!!)

My point being (I do have one, I promise!) is that if you have that little voice, that little speck of hope, that little spark of courage, then it will not go away, it will just get stronger.

I do not know all of your stories, but I know some of you have been through a truly dreadful time.....but you know what? You are still here and even after what you have endured you are considering trying again - I think thats amazing - I think you are all amazing.

After my mc the nurse at the EPU told me that there is no need to wait for a month - in fact she told me that there is some evidence to suggest that you are very fertile straight after a mc (?) Anyway, we tried (again!) and the result is my gorgeous 7 month old son.

There is hope x

well, with m/c (first pregnancy) i fell pregnant in first month of trying, which is when i started with the folic acid. I carried on taking the folic acid as knew we'd try again a few months later, DD being the result.

Third pregnancy (the most recent) i fell pregnant first month of trying again, and hence had only been on the folic for a couple of weeks.

Like you say, I can't help but think there's some kind of link here, as with my healthy DD I had been taking the folic acid for about 4 months before I conceived her.

Who knows

Thanks Justa, an interesting theory, which I'd never even contemplated.

I think I've understood what you're saying, going to digest this afternoon and read it again later.

B x

Hello ladies,

I have been following your thread silently for a while now. I am bowled over by the strength of each of you, and saddened that you have each had to endure so much.
I am tentatively writing now as I am in a situation a little different to each of yours but facing a situation which you may have a deeper understanding of than the "general population". I feel this may be a safe place (I hope).

I am pregnant with no.3 (). Our DD (DC2) has cystic fibrosis, diagnosed after her birth. We had no ideas we were carriers- her older brother is fine. We always wanted 3 children and for the past 18 months have struggled with deciding whether to follow our dreams and face the consequences, or settle with our 2. We decided we had to follow our instinct to try one more time- but we also in our soul searching realised we could not as a family have another child with CF (for many reasons, partly due to our own ability to cope but a lot to do with cross infection issues with our DD). PGD/IVF was not an option due to where we live & finances. So we have decided to have a CVS and terminate if the foetus is found to have CF. I am due the CVS in just over 2 weeks and reality is beginning to bite. I am terrified of having to act when we get the results, which will hopefully be in a week after the test, and yet know I will have to. I wonder where I will find the strength to do this, and yet know it'll have to come. We have kept quiet about the pregnancy, only 2 friends know, due in part to the strong opinions of many (which they are fully justified to have) and I find it almost overbearing trying to not let this dominate every waking (and sleeping) moment.

I understand our situation is very different from yours, and maybe this is not a good place to post so I really do apologise if this offends anyone, but I needed to share a little of this with people who may understand. DH, bless him, is not the best at talking through emotions, and believes ignoring what is happening is the only way to deal with it.

Justa- I am keeping everything crossed for you.

Love to you all.

Dearest Jumping Jellyfish
I think I have seen your name around on threads here and there and firstly Welcome to our little community. A big warm welcome to a place we would not have, any of us, chosen to be, but now that we find ourselves here, are so glad of the support.
I think everyone here would reach out and recognise your pain and feel every compassion for you.
You have made a (I want to say brave, but not the right word and annoys me when people say it to me) brave decision to conceive a child and we are all grappling with very similar feelings here.
Do we conceive knowing that the child may be affected and knowing the decision we would face?
As Shangrila said this morning - the pain of not trying for another baby can be more painful than facing the prospect of termination.
Is different in that you and your husband know the risk totally and utterly (as does SAMR1 if I remember for her chromosomal condition)and must be more sore and frightening and abysmal for you as you obviously love dearly your affected daughter.
And you are acting out of love and care for her- knowing what you can manage as a family.

I pray and hope that this baby is well - and you have a good chance that it will. Please let off steam and fear and agony here - we have all done it and will continue to.
If it is not, well, we will be here too.
It is a harsh reality of your life - but it is astonishing what the human spirit can endure I am beginning to realise.
I would never have thought I would be able to consider another child but here I am today planning my folic acid regime in full knowledge that I may have to face the same decision again. But how does one turn down the potential to have another dear life to love?
Others will offer you more thoughts and wishes and hope and love here too
Thank you for writing to us - it helps alleviate our pain and loneliness too you know - to share and comfort others.
with love

Hello JJF

Unfortunately, we don't meet anyone on this thread under happier circumstances. I'm really sorry to hear your dilemma. What kind of odds (a dreaded word to myself and I'm sure to all the ladies here) are you looking at, of this baby having CF?

Physically the CVS isn't too bad, leaves you feeling a bit achey for a couple of days afterwards, which was made worse by the fact that I was convinced I was miscarrying (which I didn't).

Wishing you much strength over the next couple of weeks, I know all too well what you're going through.

B x

Also Becaroo
Hello to you again - have thought of you and nice to see you here.
Justa - I need to digest your thoughts - rather oddly have been revising Buddhism with daughter this morning as she has RS exam this afternoon. Am liking The Buddhist ethos more than the Quaker thing. Seems mostly like sensitive, sensible sound humanitarianism to me.
And to JJF again - welcome to a strange but so so comforting place.
Must go for a bit now.
Bee x

Busier / Bezzy / Ladies

Just a quick post as dashing out to take DD swimming.

Re: the folic acid thing. When I had my DD I started taking it when I found out I was pregnant, about 4 weeks. Didn't take it with my mc nor with Joseph.

I talked to my consultant about it last week and she said it's good to be taking FA for about 3 months before conceiving. I also mentioned the article (I think Bezzy posted) about father's taking FA. My consultant hadn't heard of this but said it couldn't do any harm.

On Wednesday last week I went to a local support group there and one of the ladies mentioned to me her consultant had prescribed a higher dose FA (you can only get it over the counter) it made a hugh difference to her 2 pregnancies. I mentioned it to my GP when I saw her on Thursday but she said FA didn't have any impact on Downs just Spina Bifida and basically poo pooed my suggestion.

All this talk of FA has made me think. I'm going to write to my consultant and ask her about this over the counter one and find out if it's worth taking.

JumpingJellyFish - Welcome to our home. No one will judge you here. We've all had tough decisions to make and we need a place to let it all out.

Shangrila - before I overdose on Folic acid - can you confirm that your dose is 5mg - ie over ten times the recommended dose of 400micrograms!
Where do you get it from too?
Can you sense the hysteria in my tone?
deep breaths for us all - including you Marj!
Shall we start up a folic acids anonymous group?
Also sorry to be pain but there was another article about too much FA and breast cancer risk.
BEEEEEE

How you doing Justa in the sickness department? All well I hope.
Ps do you not just love our thread and how it helps people at all different stages of the journey? I do. I love that Shangrila only realised today some feelings about her painful experience through writing to us and I am honoured that JJ feels able to share such private moments with us. Thank you for helping us to get here.

Daughter just back from RS exam and very happy as it went very well for her she feels - maybe she can be the first teenaged buddhist monkess of east london?
BB xxx

Does it come in a mini dress version - can see this catching on in the clubs of North london?
But where would she keep her mobile phone?
Are there hidden pockets?

Bee,

Re: the FA, my friend at support group was definately prescribed the 5mg version by her consultant.

Hi all, I can't stop and I really want to but I have to see my mum off on a trip to Ireland.

Some people are given 5mg of folic acid - it is a naturally occuring 'vitamin' but certain drugs affect how we absorb it, plus if you have previously had a baby with a neural tube defect it is gven at these dosages.

It is thought that it actually plays a huge HUGE role in all our well beings, to do with artery and vein health, and our circulation in general. It also has a role in clotting and red cell formation in the blood.

It is in all green food, cereal is fortified to try and get it into the general population. Bread may also be fortified soon too. I don't know about the links with higher exposure and cancers, but I'd guess there would need to be long term exposure.

Anyone trying to conceive would be well advised to take the 400 dose, for sure. Until 12 weeks when the neural tube is closed and the work is done. That said continuing the supplement can't hurt. Bigger doses can be safetly given where a gain is possible.

I guess I better get going too for my egg donation malarky!

Here endeth the lesson!

Sure you will be fine Justa - we are all more than a little neurotic about having a healthy baby on this thread at the moment.
Sure you understand - feels so important to have something to cling to that may help.
Have already made appointment to see GP tomorrow as can only get on prescription apparently.

Gosh, what a lot of posts on Folic acid. To add to your polI, have probably eaten my body weight over the last 6 years (yep, been trying to build a family for that long...really don't want Dd to be an only child) Took it with all three pregs, so it didn't make any difference to me/my problems.
Only started this time on day one of cycle. But do eat quite a bit of veg.
So, Bee, you're going to get some on prescription...hmm, wonder what you are planning? (smiles at Bee, thinks she has made her decision)
My pet paranoia is hot water bottles and hot baths, I am always cold, but panic that these affect a tiny growing bean.
Any other stuff to worry about?
'Slapped cheek' was a concern in one preg but had a blood test and have antibodies against it.

Back later. xx