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

at JimJams and mine x-post. I agree with everything she says.

I hope HarryHill will come back and at least read this debate even if she isn't prepared to discuss with me.

Yes agree with Blu. I know my decisions changed between first and second pregnancies. Also with increasing age and with far more contact with medics my ability to stand up to doctors has increased enormously in the last few years. I'm always polite - but am far better now at ensuring I don't end up agreeing to something I don't want (and I have done that in the past when younger).

Blu, you're right. I have learned so much in these three years with regard to my son that I know I couldn't possibly have learned it all then, even given the opportunity.
I think I mostly feel cheated about the way it was handled and the lack of support. They didn't even know what his condition was and gave me some wildly inaccurate possible scenarios. I won't go into it here as it's not the place. In the end, I know, medically speaking, that I made the right decision, only through confirmation of his post mortem. I just feel cheated with how I came to the decision; I think that is just as important.

Yes it should be your active decision. Not one that's made for you. xx

I was thinking about this some more this morning and in particular about Blu's comments re things being handled well in her experience when the risk was of a condition that they could try to correct with medical/surgical solutions.

And about how there is (rightly) anger that foetuses with a risk of disability can be terminated later while ones which do not show any risk on the tests done, cannot. And what this says about disability. Or even just the risk of disability. When of course a foetus which shows no risk on tests could be disabled anyway. That type of thing.

So I was thinking what conditions are tested for that result in late termination. The ones mentioned on the thread are downs syndrome, club foot and cleft palette. Two of these have medical solutions though - things that you can do something about - even if the result might not be perfect it won't be the end of the world by any means. Downs syndrome is different and there is a range of severity - does anyone know if the tests show how severe the child is likely to be affected, or if there is just a risk? That would be interesting to know.

I also wonder how many late term abortions are really being carried out for reasons other than concern for life of the mother / foetus has a condition incompatible with life? As opposed to club foot for example. I find it hard to believe that there are so many late abortions being carried out for conditions which are not that big a deal but obviously open to understanding that this is in fact happening.

Finally I know that these things can be hard to talk about and that so many people have shared their terrible stories and pain on the thread. I also imagine that this is a discussion that has been done many times before (I have been involved in one or two myself!) but I still don't feel that I really understand the situation - whether there is a problem in reality with the disparity rather than just a theoretical problem IYSWIM.

No the tests don't show how severe DS would be and it's a pretty large spectrum.

However, unfortunately the information given (if any) (and generally understood) about DS tends to be pretty outdated. Children with DS are now educated - they have a right to an education. Their health problems are also treated - which again makes a huge difference to outcome.

The most likely outcome (ie the most common one) is that a child with DS will grow up to be an adult who MLD's who could cope with a supported living arrangement. Usually this involves some work. I've just passed a young lady with DS this morning who was catching a bus. I see her around a lot and she is always independent and presumably is working in some form. There was an online reality tv show made following a group of young people with LD's and I would say the people with DS in there are probably pretty typical www.the-specials.com/

But DS is a spectrum, so some will be more affected - with SLD's rather than MLD's, and will require higher levels of care. Out of the kids I know with LD's and those using services locally the ones who need the really high level of support are the one with severe autism, not those with DS. So for example one service DS1 uses which offers the highest level of support locally available to those with learning disabilities - doesn't have anyone with DS accessing the highest level of support. The few with DS who use the service at all attend the higher functioning/less support needed groups, although tbh more and more often children with DS are being educated in mainstream and attend mainstream groups - for many (not all) this is appropriate.

This is the other end of the spectrum with DS
media-dis-n-dat.blogspot.com/2011/03/ny-man-with-down-syndrome-finds-success.html and here's his website members.tripod.com/~suj_2/

That sort of ability is rare - although will perhaps become more common with education and re-working of expectations. People with learning disabilities had no legal right to an education in the UK until something ludicrous like 1980 something - can't remember exactly when, but it was shockingly recent.

My concern really when it comes to termination is that people are given the above information in some form before proceeding with the termination. Not because I feel they should be not terminating or anything - that's their choice, but because if someone makes a decision based on incorrect information then if they later find out that their assumptions were not right then this could lead to them feeling they had made the wrong choice, or had been cheated in some way.

The closest it came for me was when pregnant with DS1 we decided we would terminate for anencephaly, trisomy 13 and trisomy 18 because all were 'incompatible with life'. I then (after ds1 was born) came across a website for a boy who had trisomy 13 and who lived for three months. And to be living for three months is very different from being 100% incompatible with life. I've since found that quite a few babies with trisomy 13 do live for a few weeks/months. And that changed my choices. I was horrified and felt that had I terminated a first pregnancy for trisomy 13 in my first pregnancy and then come across this website I would have been devastated. Yes ultimately the outcome would have been the same, but I would have chosen a different path to it.

So for me change it so anyone can terminate for any reason to birth, get rid of the external 'valuing' of lives. But provide women undergoing testing proper counselling so they can make an educated decision for themselves. In fact just trust women to make the right decision for them. Don't put time limits on and don't give out of date information or just assume as a doctor that living for a few weeks is ultimately the same as being incompatible with life .

I am familiar with the spectrum of down's syndrome which is why I asked the question about testing. It seems to me that if the test cannot predict the severity then it must be ensured that people are given full information about the range of severity, how common different severities are, and the likely life outcomes for people with different severities (independence, basically, I think that is what most parents are worried about when the consider these things).

I find it interesting that Blu was able to meet parents with children with the condition that she was looking at, and when I was a child I met other children and parents a couple of times to tell them all about various procedues and what the outcome had been etc. I do wonder if this "human touch" of offering to meet people with conditions / their parents would help.

The high court have ordered that figures be released so I guess the picture will be clearer when that happens.

I think that some people do offer to do that wrt DS. It can be pretty tough on the parents though (imo) and I would hope anyone offering that was well supported.

That is good. I agree that it would potentially be very hard going for the people offering it.

This thread has really upset me and I am very much a words on a screen,ffs get a grip kinda poster...

I feel I cannot comment on the australian story as it seems unlikely we have all the facts except to say I have every sympathy with all concerned.

Reading the very personal and moving stories on this thread has brought a lot of memories to the surface for me.

I have lost 3 dcs in late pregnancy-at nearly 25 weeks,28 and 20 weeks. Due to various complications/conditions that I have.

They were all babies to me-they all looked like babies-albeit the 20 weeker was incredibly tiny.

I struggle with the idea of a late term abortion having held my babies. I should also probably say I have had an abortion.

With my last pregnancy I had an amnio done as the downs test came back 1 in 160 chance. Tbh its was more my dh who pushed for me to have it as I know I could never have another abortion.

For me now if the worst should happen and I were to face a child with a life limiting disability I think I would choose to let nature take its course.

Sorry I have waffled on and not really contributed anything-its just so sad.

I think, with regard to DS, the severity of the syndrome itself and it's affect on the child's life cannot be displayed through antenatal testing but the conditions that often accompany it can be seen with a degree of clarity. For example, many of the people we see today, with DS tend to be high functioning, with a good deal of independence. They are more likely to suffer only with DS. A lot of young babies and children with DS don't make it to adulthood due to the heart complications that often accompany it. Some have quite manageable heart conditions, whereas others are much more severe. I believe it is this, often unseen, side to DS that plays a huge factor in a persons predicted quality of life and a parent's choice to terminate. There are other medical conditions that can accompany DS as well as heart problems, but I've used that one to illustrate my point. A parent's decision to terminate a much wanted pregnancy isn't always just due to the DS itself. There are usually many other obstacles and factors involved.

Thistime - I'm not sure that's all that up to date. Heart defects used to not be treated now they are. But that's very recent, but of course makes a big difference in the impact on life. (Anyone remember the first Big Brother when the money Craig won went to pay for his friend's heart op - she would have been treated in the NHS these days). I do know someone who was told that the heart defect was very serious during pregnancy but once born it was found to be much simpler - still required surgery but it wasn't as grave as predicted before birth and the child is doing very well.

Yes of course there can be health issues, but treatment makes a huge difference and that's so recent I think there's some way to go with understanding how it affects lives. I'm just not sure that overstating the case (as often does seem to happen) is all that helpful for people who will presumably come across those with DS in the future. I have met people who have had terminations for DS with really no apparent issues at all - they certainly appear at ease with their decision. And I have met others who even years later still seem haunted by their decision. Also of course have met many, many mothers who didn't know their children had DS until birth. The first and last group seem to do fine on the whole, I just worry about the middle group and wonder whether proper counselling before termination would improve matters for them (whatever their final decision).

My son attends an SLD/PMLD school so I see the 'worst' cases of DS far more than I see the high functioning.

I have to say with regard to the "can it be fixed issue?" I felt that if there were chromosone problems (any of them) then it was expected of me to terminate.

When it appeared it was just exomphalos or at one stage exompahlos + heart defect then it was expected I would continue with the pregnancy as the conditions could potentially be repairable surgically.

Obviously some of the Trisomies are less compatable with life than others however I felt that if the amnio had come back showing a confirmed chromosonal abnormality then a termination was the expected next move (obviously in line with the options I have mentioned previously.)

I think that's fairly common Charleymouse. I suppose it's the medical model dealing well with the medical side of things 'we can fix this particular problem by doing x' and not so well with the learning disabled side of things. In fact as pointed out by time - it's health issues etc that impact more on the individuals life usually than LD's.

I have a friend who terminated at 32 weeks. She had to go to the UK to do it, it was far from easy or simple. Theres a lot of judging here from some people with no real experience.

Just to clarify a point of interest. DS children often have heart problems and in the past they were not accepted on transplant lists pretty much on the (generally undisclosed) grounds that because of their condition, a donor heart would be wasted on them. Sometimes this was presented as a compliance argument, i.e. DS patients would not be able to comply with the rigorous post-surgery medication regime and would therefore reject the heart.

Thankfully due to publicity like the first Big Brother winner there is now much greater transparency about organ recipients and DS patients are considered on their own merits without reference to their condition.

I don't want to upset anyone, but if I had a pregnancy that was high-risk for Down's, one of the things I'd research would be dementia. Greater life expectancy, sadly, has thrown up other issues beyond DS itself and heart conditions.

I know someone who was in the situation - pregnant with twins one diagnosed with massive brain abnormalities. Had it been a singelton pregnancy she would have had a termination directly after the 20 week scan, by induction of labour, they don't routinely do feticide at that gestation. Obviously IOL would lead to the death of both twins & feticide carries a risk to the pregnancy e.g. rupture of membranes & infection. Because of those risks of death to non affected twin & to the mother's health of carrying a dead baby feticide isn't carried out until the second twin had an excellent chance of surviving if it is/needs to be delivered immediately.

In my friend's case she had a PROM and went into labour 12 hours after feticide (at 34 weeks), the surviving twin did well because it was left until so late in pregnancy.

It is an horrific situation from all view points :(

Jimjams, indeed you are correct and I'm sorry for not stating what I meant in full. I certainly didn't mean to imply that those with DS and heart defects are less worthy of a chance, just that these extra issues will also be taken into consideration when the decision to terminate is made. We have come a long long way since people with DS were declined organ donation, but for some people, the pressures of the heart defects may indeed tip the scale where they may have felt able to take a baby with just DS to term. Does that make sense?

Charleymouse, I suppose that all depends on who your consultant is and what the condition is. My son's condition wasn't chromosomal in nature and they knew this (even though they did not know what it was) yet they still expected me to terminate and I didn't feel I had much choice. I suppose them not knowing what it was might have been a large factor there.

Oh yes of course thistime. I certainly have no issue at all with individual decisions, just rather the advice (or lack of) given by the medical profession.

strongly agree that folk're prob often given biased info re poss outcomes by staff......that said my heart goes out absolutely to the staff involved in this procedure.
seems daft to me that foetuses can be terminated and yet when baby is born it sometimes seems heaven and earth must be moved to sustain life at any cost no matter what......coild this be why these poor parents opted for the elective abortion? how many cases have we seen in press where the loving family have been unsuccessful in stopping medical intervention? can they never let nature take its course in these cases by allowing babies to be born and to die in a natural way?