Such a sad story in the news - baby mistakenly terminated.

[Christmascack]

www.theaustralian.com.au/news/nation/royal-womens-hospital-investigates-accidental-termination-of-wrong-twin-in-surgery-error/story-e6frg6nf-1226204303788

Sorry just re reading the thread and realised that I should have explained this option better.

Carry both T1 and T2 until after 32 weeks then* terminate T1 to enable T2 to be as viable as possible if my body went into spontaneouos miscarriage after the termination

Also they don't use the term termination or abortion when relating to a multiple pregnancy when only one baby is to be aborted. It is referred to as a "selective reduction".

Thank-you Valiumredhead; Wannabe, (are you sure you know what it is like to live with a visual impairment with you only being blind and all ), Saintlyjimjams; GreyGardens; (sil is DHs sister), Blu; Chipmonkey - sorry for your loss as well.

WRT counselling I have never had any in relation to pregnancy, termination, child bereavement, unless you actually seek it out it it is not as available as you all think. I have had the exact same comment made to me as Dee. . There is a thread somewhere of all the things the bereaved Mums have had said to them and in a dark way it is amusing, in another way it is just abhorrent how we are treated.

If anyone is reading this and facing any of these issues I can recommend Antenatal Results and Choices ARC . They were very helpful in a non judgemental way .

My thoughts are with the mother. Can't even begin to imagine how she must be feeling

deemented omg that is awful.
Blu you are so right, to be fair there are good doctors out there, we have come across quite a few.
but they often have no real life knowledge of disability.

How to rectify that though? How to give real helpful information to people who are in this position rather than what seems all too often to be an assumption that there will be a termination?

Not talking about really serious conditions now obviously.

The ironic thing is, i'm a counsellor myself, and at that point i was just too shoucked, too defeated and too heartbroken to pull her upon it. I wish i could have been strong enough to do so. I still see her around the hospital now - she still works there, but i refuse to have anythign to do with her.

I am thinking some very cynical thoughts about the NHS and costs as well. But I think they are probably unfair.

You still see her? That's just awful. I don't know what to say.

Sardine - if your thoughts about NHS are in relation to this article then they are unfair - it happened in Australia

Not about this situation, particularly, but about the points that have been raised about termination seemingly being "expected" for a range of conditions as the default.

Not in a professionsal capacity, Sardine, but she still works with vulnerable women.

Hi, this is my first post; I hope it's ok if I dive right in.
Firstly, as everyone else has said before me, this is such a tragedy; my thoughts are with all involved.
Secondly, in response to the main debate, I will lazily say I agree with Blu, for the same reasons.
Thirdly, in regard to how the thread has moved on, I concur that counselling, both prenatally and antenatally, desperately needs improving. I received very little (and it pains me to say, very one-sided) counselling prenatally. I felt my decision was rushed. Antenatally, I had to seek out my own counselling and the best I could find was a counsellor at my GP's surgery with no expertise in bereavement and no experience in my specific circumstance.
It is almost three years on and I still regret my decision and feel I made it hastily, mainly due to confusion, pressure, fear, guilt and lack of real, impartial support.

Yes I guessed that you saw her around at work.

Is there any way you could complain? Or is it too late / not something you feel up to doing? Even if you didn't put your name to it?

It must make you feel angry & upset every time you see her, I can't imagine.

It's been almost eight years now - i'm sure the time for complaining has long since passed.

I don't think it's cost, I really don't.
I think it's about seeing an issue with a medical 'solution' which can be offered.

In terms of cost, and NHS support, I am incredibly impressed with everything we have been offered. I first saw DH's consultant when I was 21 weeks pg - she came to talk to me about what I could expect wrt to what they could see of his leg on the scan, and it was actually her that calmed me down about the Trisomies that were connected with the soft markers (describing them as 'rare as hen's teeth'). We were introduced to several families with children with similiar conditions and who had taken different approaches, and have been offered treatment involving the latest v expensive kit from the USA rather than the standard stuff, in pursuit of a more satisfactiry outcome.

But that's medical staff again, pursuing the nth degree of a medical solution - in our case with top results on our best interests. Orthopaedics is very differnt from less 'mechanical' areas of medecine.

Yes you're probably right. I was just thinking - not an "official" complaint - but a letter to the head of that area explaining what had happened and how you felt... Oh I don't know it's probably a bad idea.

Thistime I am sorry for your experience, it does sound as if you were railroaded.

So tragic all round, this poor family took a decision they felt was right and have been left with a double dose of tragedy.

I also feel heart sorry for the medics concerned.

On the facts we have heard, I personally would have given both babies a chance, however perhaps the health of bith was being compromised and this was their best chance?

Why do you think there is a difference between something which required the attention of orthopaedic types, and other conditions, blu? Your post is really interesting.

SQ, I don't think I was railroaded so much; it was more like it was just presumed which option I would take and there was an underlying feeling that 'of course I would terminate' and in such a vulnerable state, who was I to pursue other options?

ThisTimeNextWeek you are so right counselling should be improved.
after a traumatic birth and near death of my baby, I was offered nothing, even months later when they finally gave me a dx, zilch. I was lucky I still had the baby thank god, but am always shocked that there is so little support.

Oh thistime I do feel for you.

SQ - that's a good question, and I am having to think about it in more detail.

I think because the impact and effect of conditions which are neuroligically or sensory based are hugely more social. There isn't much a doctor can 'fix', but the measures we can take within a social model of disability can be more readily implemented out in the commmunity - guide dogs / hearing dogs / communicating through BSL / using PECS ..so much more to do with the way people communicate.

With a condition that can be 'treated' by a surgeon, like orthopaedics, maybe including things like heart surgery, it is a mechanical thing - doctor does stuff, health or condition is brought under control by medical means.

Does that make sense?

I may well not be right, and am open to disagreement across the whole breadth of the suggestion.

Sardine - my view is that orthopaedics is an area that is very medical. There's a problem and it's fixed - medically. The impact on a family is medical /mobility related in part (not entirety of course but large element of it is).

Learning disabilities don't really fit the medical model. My son is severely ,earning disabled and has severe autism. He is far more affected than any child I have met with DS to date and no doubt had there been a test we weoukd have been encouraged to terminate. He can't be fixed medically.

But the medical model doesn't really understand his life at all or ours with it. Yes our life is certainly harder but as a family we are happier than many I know who are not dealing with disability. The difficulties have introduced positives into our life as well. I actually believe that however much harder our life is it is also happier as a result of his disability ( this of course isn't always the case) and I can't really say his brothers have been affected negatively because so far they haven't. But medics can't really understand that. He's broken (in their eyes) but can't be fixed (except by terminating and starting again).

Thistime - yes I think the fact that there are two valid choices should be made a lot more explicit. That assumption is very unfair - especially on the woman as partners often assume the pregnancy will be ended as well.

Well Blu I said the same as you :) and am living it.

I think the medical model struggles to know how to place someone as broken as ds1. He's non-verbal, but intelligent in some ways, cannot be taught, will need 24 hour care for the rest of his life. Yet ge is very healthy. He needs help communicating, and he needs access to lots of activities (which isn't always easy) but he doesn't need fixing in a medical sense.

ThisTime - so sorry you have had such a painful experience.

Remember that we change over time and we can never re-visit a decision with the same head once we look back in hindsight. In truth, had our amnio come back with one of the Trisomies suggested, the chances are that then, I would have opted for termination. Even though I was throwing myself around on the floor in the pain of thinking about disloyalty to my 20 week unborn baby, I think I would have done it. NOW, having read of so many people's experience on MN and met so many more people in RL, if it happened again, I would continue a pg even knowing that the condition was non-viable one. But I couldn't have made that decision then, and I couldn't have gained all that experience in a crash course.

The earlier in our lives we make decisions, the less experience and knowledge we make them with. Even the experience of making decisions gives us more experience in making decisions. So please don't beat yourself up, amongst your sadness.