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

P.S. the law does not allow termination of foetuses with disabilities, precisely because of the huge variety of disabilities. It only allows for the termination of foetuses with risk of being born with such physical or mental abnormalities as to be seriously handicapped. This is usually taken to mean foetuses which if born would live very short lives and/or very painful lives with no possibility of recovery. The law also allows for late terminations if the pregnancy poses grave permanent injury to the mental health of the woman, but such cases are truly very very rare.

moomin that was a good weight for a 32 weeker!

I wonder if the parents had wanted a termination a lot earlier, maybe soon after this would have been discovered at approx 20 weeks. But drs may have suggested waiting until other twin was viable so if an infection occurred after the fetacide then the other twin could be delivered with a good chance of survival.

"The main reason for allowing for such late terminations is that the lives of the babies involved would be, if born, so painful, short and full of suffering
that they would be better off dead." that is simply not true. While it is almost certainly true that in most cases the decision to terminate is one made based on perceived quality of life, the fact remains that a baby that is considered to be severely disabled can be terminated up to term. This includes babies with downs syndrome; babies with cleft pallet; club foot (which are certainly not severe disabilities).

So while we would hope that only babies who were so life-limited that they would live short painful lives full of suffering would be terminated in this way, the fact is that actually it would be possible to terminate a pregnancy where the baby had the chance of a long and healthy life, albeit with a disability.

And reality is that with many disabilities such as Downs the future is in fact unknown, because so many of them have a spectrum. so there is no actual way of knowing whether those babies will be severely or less severely disabled.

Harry For club foot? No, not a serious abnormality.

Cleft palate? Possibly yes as the term describes a range condition, from a cosmetic defect to serious abnormalities that compromise respiration and are not likely to be surgically correctable.

one hand? No, not a serious abnormality.

Quality of life questions are notoriously subjective, but think here of pain which cannot be relieved by medication without ending life anyway, and conditions that are severely life shortening (baby lives a few hours or days).

Having worked with a lot of doctors in this area I have yet to meet one that took these requirements flippantly or who took any sort of pleasure from performing these late terminations.

harry where have I said that is what I want?

'If a disabled baby can be terminated up to birth then the same rule should apply for a non disabled baby. '

This. Totally.

"The main reason for allowing for such late terminations is that the lives of the babies involved would be, if born, so painful, short and full of suffering
that they would be better off dead."

Then why don't we allow adults with terminal conditions the right to end their own lives on their own terms, surrounded by family and with what dignity they can have?

We allow it for people who are viable outside the womb but cannot voice how they feel, we allow others to decide that for them, but we don't allow sensient adults to make the same decision about their own lives?

wannaBe my experience in this field is limited, but do you have any statistical evidence to support the claim that foetuses with minor disabilities are terminated past 24 weeks? Appart from anything else these terminations are illegal and I would imagine that someone, somewhere would have contacted the police about at least some of them. The doctors, nurses, physios, etc. I train (and of those I have seen a few thousands over the years) have many diverse views and I am slightly disinclined to believe that the large numbers of medical staff involved in these illegal terminations would all be willing to keep quiet about them.

well sardine it's simple really isn't it.

There is the side that believes that disability does not equal worthy of life.

And there is the side that believes that to consider those with disabilities as beneath those without from the outset is wrong because disability does not equal not worth living.

Nothing strange about that.

eminencegrise I am totally with you and think that active euthanasia should also be an option (voluntary should be easier, non-voluntary should carry more checks and precautions) and such a move might well lead to fewer late terminations. Until then terminal sedation (which is widely practiced in the UK) comes as close as we have to active euthanasia, while the withdrawal/withholding of treatment is an option for those requiring treatment.

Yes Valium mw said he was big, we only spent 4 days in nicu we were very lucky.

It is a very difficult decision to make, as a parent who was offered a termination due to the hospitals thoughts that my son wouldn't make it to 24 weeks and that if he did his lungs would be too under developed for him to survive it is one of the worst decisions you ever have to make, I chose to carry on but the thought that after he was born he might suffer before dying haunted me

' Appart from anything else these terminations are illegal and I would imagine that someone, somewhere would have contacted the police about at least some of them. '

No, they are not. Or is there a whole law out there says, 'It's okay for Down's Syndrome but not cleft palate/one hand/club foot because that's not as bad?'

It's a policy of saying disabled lives aren't worth as much as 'normal' lives, or some disabled lives aren't worth as much as normal ones because we wouldn't dare tell an adult, 'Mrs Jones, your mum's dementia means she will suffer and have no quality of life, you should consider having her snuffed out.'

sorry it's the dm but

\link{http://www.dailymail.co.uk/news/article-388113/Abortions-club-foot-condemned.html\terminations for clubfoot}

iirc this was fairly high profile at the time because she went to court after and lost her case against whoever it was..

This makes really uncomfortable reading.

I haven't read the whole thread but I cannot understand why if the baby had such a lethal abnormality the option for termination wasn't given at an earlier gestation.

I work as a midwife and whilst I have sadly seen many pregnancies terminated( with fetocide) for abnormality, I have never seen it with a twin pregnancy. What I have seen, is, where there is a twin pregnancy and one has an abnormality, either there is fetal demise somewhere in the pregnancy. Or the pregnancy continues and nature takes its course.

The thought of something like this occuring is shocking, but I guess we dont know the full facts.

\link{http://www.telegraph.co.uk/news/uknews/1518952/Harrisons-parents-chose-his-name-when-he-was-a-35-week-foetus-then-they-were-offered-a-termination.html\story about a woman who was offered a termination for downs at 35 weeks}

sorry wannabe I don't do Daily Mail references! Only peer reviewed academic journals please! Anyway, I shall (gracefully I hope) bow out of this thread before hijacking it further, sorry OP!

Hi
along with Dee I am someone who has direct experience of this.

I had a multiple pregnancy with one twin healthy, (T2) and one twin, (T1) with an exomphalos. I was told I could terminate T1 up until I was in labour due to his condition.

I had a roller coaster pregnancy with scans saying mild exomphalos to huge exomphalos; heart defect to no heart defect; 1/3 chance of chromosone problems (Edwards, Pataeu or Downs), to all clear following amnio. I had to wait until various dates had passed to enable the best information to be available from scans.

I was offered a complete termination at 16 weeks when at the nuchal fold scan it became apparent T1 had a problem.This would mean destroying a healthy viable baby.

I was then offered almost on a weekly basis the alternatives of:

• Terminate T1 immediatley to give T2 the best chance of growth and development but with the risk of miscarriage

• Carry both T1 and T2 until after 32 weeks to enable T2 to be as viable as possible if my body went into spontaneouos miscarriage

• Carry both babies until labour occurred and deliver both babies.

I was told carrying T1 may result in my body trying to miscarry him and that would result in losing both babies so a medicalised termination may be the better option.

If you were told to keep one of your babies alive you had to terminate the other how would you feel? What decision would you make? Now face it in reality not hypothetically, boy is it tough.

FYI I chose to give both babies as much of a chance as I could and delivered DTs at 31+4 after 6 weeks in hospital due to high risk of spontaneous labour. They were 3lb 10oz and 3lb 0.5 oz. T1 looked healthy (apart from his exomphalos) and T2 looked like a sickly baby bird that had fallen out of his nest.

T1 died 9 hours after birth due to a laryngeal cleft that had not been visible on any of his scans and was a complete surprise to all concerned. T2 has just started school and is a thriving 4 year old.

One of the reasons which enabled me to keep perservering with the pregnancy was that when it came to it the conultanst etc had so many different scenarios we decided to let nature take its course, cross our fingers pray and what would be would be. One of my most precious possessions is the photo of my DTs together shortly after birth.

I am also an Aunty to a little boy who lived for three weeks as his Mum was given multiple procedures to keep him alive even though he was not really viable. She now thinks this may have been partly due to the medical teams interest in them as a medical case and wishes she had known before hand what would happen to her little boy when he arrive and what he would have to go through and tolerate.

Please try not to judge too harshly when you have no experience of this situation. Nobody except the parents and their medical team know the full story of this.

I have every sympathy for this family and my heart goes out to them. This family may have wanted to terminate weeks ago but kept one twin to enable the other a better chance of life.

Oh gosh charley, what a moving post.

Some references here: (not quite the same issue but touching on it)

www.abortionreview.org/index.php/site/article/170/

and here:

www.abortionreview.org/index.php/site/article/959/

I think the issue really is what constitutes a 'serious' disability. I mean clearly for conditions such as anencephaly there is only one possible outcome and it's got to be up to the parents to decide whether they would prefer that to be induced or occur naturally - and I do hope they are clear they do have that choice. The site I've linked to seems pro-choice but also appears to assume that medics would only advise termination in the case of severe/near incompatible with life/painful life type conditions and from talking to women it seems isn't often their experience. I have friends who have tested positive for T21 and then wanted to keep their babies (and really T21 often is not a massively serious issue for many now children with DS actually have a legal right to an education - if someone chooses to keep their child with DS they really shouldn't be treated as if they will be bringing a monster into this world) but have come under enormous pressure to terminate. It seems that sometimes once you're on the testing treadmill the medical profession forgets you have a choice to continue with the pregnancy as well. I also believe the lack of discussion around that can be damaging for many. I know women who have terminated (for whatever reason) without any regrets at all - who have the reassurance of knowing that they might the correct choice for them. Unfortunately there are others who find their choice much harder to deal with, and I wonder sometimes whether that's because they weren't really presented with a choice and ended up doing something they didn't really want to do. Better counselling definitely needed imo.

Because of the difficulties in deciding what is 'serious' and what won't be antenatally (and even for easily diagnosable things like DS you just can't tell - most likely you're looking at MLD and some sort of supported living as an adult, that's the 'typical' outcome, but you could be looking at professional clarinetist who can live independently (have a google) or SLD's CB's and 24 hour care- you just don't know) I believe any baby should be allowed to be terminated up to birth for any reason. It would get rid of the two tier system that I personally find so offensive and would still protect a women's right to choice. It would also allow a more open discussion (which I think would be helpful to people suddenly finding themselves in the situation)>

I'm in tears. I have one child born at 30 weeks and is Gifted and Talented, one at 33 weeks and is already swimming widths at the age of 3. No child should be terminated after 24 weeks unless the mother's health is at risk or the fetus is/ will be in pain!!!!!

Oh I'm sorry

www.abortionreview.org/index.php/site/article/170/

and here:

www.abortionreview.org/index.php/site/article/959/

I completely and utterly agree with Charleymouse

Everyone is saying how awful it is and it shouldn't happen... but until you are in that position you can't even begin to imagine what you would do. Ever heard of Sophie's choice? Well this is the real life version.

Charley, so sorry for your loss.

Tbh I don't think this is about judgement of the parents. I think it is entirely possible to sympathize with the parents while at the same time judging a system which allows it to happen.

People take the option to terminate a pregnancy at such a late stage because they can. But that does not make it right; that doesn't mean they are necessarily wrong for doing so - the medical intervention is available to them after all. But that doesn't mean that one has to agree that the presence of the medical intervention is right, iyswim.

I think few people would argue for instance that it was ok to euthanise a baby post birth. But if that option became available, and parents took it up, then people would still think the option was wrong, while sympathising with the parents' "need" to take it up..

Charley that sounds a nightmare. That must have been an incredibly difficult time - truly a rock and a hard place. And if your sister/sister in law is correct in her suspicions that is dreadful

Amazing post Charley, sorry for your loss, and I would never judge you or your sister (sil?) for whatever you chose.
I do agree with SaintlyJimJams too, as I still believe that whatever the reason for a late termination, it can never be taken as a flippant or whimsical decision.