Diagnosis of lethal condition

[Habbibu]

Am musing about whether even posting this is a good idea, but maybe I'm in a sufficiently good place to start this thread, and it may help others in future.

I've looked at the other threads, and realised that when my dd was diagnosed with anencephaly, I wouldn't quite have fitted in either. I have wished many times that her lesion had been further down her neural tube, so that she would have been disabled but alive.

But we didn't choose to let her live her natural life-span, however short - we had her induced at 21 weeks, so yes, a termination. I'm surer now, since going through that, that if she'd had a chance of survival we'd have clung to it, as losing her was so hard, even though she had weeks, maybe a couple of months to live.

So, for those of you whose unborn child has recently been diagnosed with a lethal condition, or who have terminated or carried such a child to term, maybe this thread will help you - I don't know. Personally, I hope it's quiet, and nobody else has to go through it. But if you do, here it is, and here I am.

Argh. I avoided sites like that, tbh - found quite a few when first googling anencephaly. I think even with a lethal condition there's a what if feeling. But dd had just nothing, nothing above her brow ridge, so her awareness would have been so very limited. I tell myself she'd likely have miscarried anyway.

maybe I'll just not look. I don't know.

But yes, someone wanting to continue a pregnancy should have the opportunity to see that.

Scrub what I said last. i'm tired!

I'll post the link below, but please it does come with a warning that it is probably more suitable for people wondering what to do rather than those who have already been through it. I would say google (and give the keywords) but if you do that you do come across some truly vile sites talking about this particular blog so I'd rather post the link.

blog is here. She's Christian - one of her recent responses to some of the stuff being written about her seems fairly hellfire and brimstone, but tbh I can understand why as I've seen some sites trying to re-find this one, and they are revolting and very cruel. So I can (even as an atheist) understand it.

Hi, I don't know if this thread is still 'live' or not (quite new to this) but just wanted to say thanks to Habbibu for starting it. My baby was diagnosed with Trisomy 13 last year after a high nuchal measurement picked up at the 12 week scan. When we were given the diagnosis 'incompatable with life' my world feel apart and to be honest is still not back together again. We were told he was unlikely to survive the pregnancy and definitely only days if at all, we terminated at 14 weeks. I am haunted by this experience (Chooster, I too live in Edinburgh and unfortunately did not receive the same level of care, it was all pretty horrendous). But like others on here, I coudn't face going through the whole pregnancy, getting bigger and people asking was I excited, knowing what I knew.
I am now pregnant again, only 6 weeks, which is why I have joined Mumsnet, and came across this thread. Good to read of others going on to have healthy children. I am riddled with anxiety combined with the guilt which I have never gotten over from last year. Although I do feel blessed to be pregnant again. Am considering have no screening done this time though as I just think I don't want to know. Sorry, think this is a bit of a ramble, like I said, I am new to this.

Samandbeansmum (and all of you, in fact) -

Guilt has no place, NO PLACE, in any of your hearts and minds. You made the most loving, compassionate decision you could in a terrible terrible situation where the normal rules were meaningless and where no-one should ever have to tread.

I am so moved by all of you. I hope that those of you who have found peace keep holding it in your hearts alongside the memories of those precious little ones, and those of you yet to find peace - I pray it comes quickly. You've all suffered enough.

Thanks Casserole for your kind words. The rational part of me knows that I did the best I could with the information I had and I try not to feel guilty about walking down a path that I never, ever thought I would have to go down. I often wonder though what my baby thinks of my decision and whether he thinks it was the right decision.
It's hard not to torture myself thinking that he might have proved all the medics wrong (although I know he wouldn't because the post mortem showed a load of things really wrong).
Anyway, thanks for your reply and your hope that we find peace, I hope so too!

I've been in two minds about whether to post on here, as we're going through this at the moment. Last Friday at my dating scan, major problems were spotted including holoprosencephaly, failure of the forebrain to divide; my world fell apart. The consultant was really, really sensitive and very supportive, after I'd got DH with me we decided to have CVS as we felt we needed a firm diagnosis, and she said trisomy 13 or 18 was likely (Patau's or Edwards syndrome). We spent last weekend finding out more about these conditions on the web, but it was hard to know what to do until the results came back. They were positive for trisomy 13. I know after reading many websites that women do choose to continue their pregnancy and that some babies live for a short while after birth... but with having the known problem of holoprosencephaly I feel that our DD's chances are very slight of living and more than anything I don't want her to suffer. I also don't want my DS to suffer, as he's too young to understand.

The best help I've had apart from the hospital has been from church, ARC (antenatal results and choices), SOFT UK (I spoke to someone on Weds eve who had been in a similar situation) and also the Trisomy 18 foundation - I know our DD has trisomy 13 but this website has input from families who made both choices, to continue and to end the pregnancy early.

We are fairly early on in pregnancy, and the best advice I have been given is that there is no need to hurry into a decision. Live with it for a bit. Grieve for the baby that you thought you had, then live with the baby you have for a while. We are hoping to actually do some nice things in the next week so that we can feel that DD is with us. I'll not say what our decision is, though you might guess. But we're going to live with it for a while, live with the child we have, so that when we meet we can say I love you and did what I hoped was best for you.

Hi NumptyMum

I couldn't read this and not reply... I am so sorry you find yourself in this position. I have had two pregnancies end in fatal diagnoses: one at 13 weeks, one at 20 weeks. Having never ever thought I would terminate, I have had 2 terminations, both for conditions incompatible with life. I also have a 2 year old, healthy DD. I really feel for you - there is no right decision.

I do want to say - you are so right to live with your baby for as long as you need. There is no good/bad decision. There is just the decision that your instinct leads you to.

If you want to talk, whichever way you decide, we are a supportive bunch on
www.mumsnet.com/Talk/antenatal_tests_choices/770313-support-thread-for-women-who-have-chose n-to-terminate-II
the thread next to this one. Whatever you decide we will support you.

Cherish this time with your baby, and I DO understand. Take care.

Dearest Numpty
Have just read your post - well done for writing it all down as it is not easy at all.
I think it is right and good to let your live with your baby for a while. You sound like a loving and gentle soul who has considered all the options. None of them are easy.
Life can be so very tough - and i hope sincerely the next few days and weeks are as bearable as possible for you.
We do have a support thread for women who have chosen to terminate - not always for fatal conditions - and there is much warmth and empathy and wisdom there.
I am sending you gentle words.
Do take care
Bee
x

Thank you for your kind words. It's such a terrible, sad situation. But I am glad that we know about it at this stage; I keep thinking of a woman I knew who, when I was pregnant with DS, told me about her own two pregnancies 40 years before which both ended in still birth. At least whatever happens we are more prepared and know there is heartbreak ahead, although whether it helps I'm not entirely sure... cantdothisagain I'm so sorry to hear that you've been through this twice, I can't imagine how awful that must be. Did you have your DD already? I've found having DS about has kept me doing the everyday stuff. But I so desperately wanted him to have a brother or sister, and feel very sad that he won't be growing up with one, whatever we decide. I think he would have been a great brother .

Hi Numpty I'm thinking of you. You are absolutely right to take as much time as you need. You need to grieve for the future child you hoped to have, and to spend time giving love to your baby, yourself and your DH and DS while you make up your minds. There is no need to rush, take all the time you need to think and talk everything through.

My heart goes out to you and your family. We are all here whenever you need to post. You will get through this. One thought that got me through my own time between diagnosis (at the 20 week scan) and delivery (at 24 weeks) was that I was feeling the pain so my baby never had to - it helped.

I know this is quite an old thread but i've just read it after a while away from mumsnet and i just wanted to say thank you to habbibu for starting it. I have struggled for a long time having had a termination - I hate to say that out loud - following a diagonises of anencephaly. I have seen the blog that was talked about previously and I wish that that could have been the outcome for me and my baby. I don't wish to cause any offence, but do wish to add something to the thread for anyone searching for anencephaly following a diagonsis, like I did. If you are trying to decide whether or not to have a termination or who have already had one, then this outcome is exceptional, not the norm. I am still struggling to come to terms with the decision I made and don't know if i ever really will, but there are degrees of anencephaly. If I could have given my child any sort of chance I swear I would. Please don't feel that a choice to terminate is taking any sort of easy option. It was without question the worst decision I have ever made in my life and one that i wish no-one else ever has to make. Sorry to say this but my poor, much loved and wanted baby would have died at the moment of birth, and my 2 children, as well as my husband, parents, family etc, would have had to go through too - if they hadn't by that time already experienced me having a late miscarrage (and I'd already had 2 of those so knew how awful that could be). So please rejoice and be moved by the short life the little girl had, but please don't think that those of us who made other choices did so because it would be easier or because we valued our children any the less. I don't mean that I feel others have done that here, I just know that I have come here in the past in a very vulnerable state and didn't want the thread to end without a message that says termination can sometimes be the worst thing that you can do for yourself, but sometimes it can be the best thing that you can do for your baby. That is probably the hardest thing I have ever said! Please don't be offended.