Saturday 19 March 2016

Cut once, suffer much

As regular readers of The Blob know, I teach Human Physiology in The Institute. My only qualification for taking on this task is that I have a body and that I have a boundless interest in finding out how it ticks. All sorts of things, which I took for granted four years ago, I now appreciate as marvels of engineering.  We encounter bone when two heads clunk together on the sports field; or in the middle of a Sunday leg-of-lamb; or as part of a fossil dinosaur - all of these bring to mind mineral or rock rather than tissue. But that would be a false conclusion because bone, while solid, is in a constant state of turn-over, energy consumption and metabolism; why else would it be laced with blood capillaries? Embryonic development sees a cartilaginous matrix outlining the skeleton becoming progressively mineralised as calcium phosphate is laid down to give the neo-bone better engineering properties: harder, less bendy, less likely to fracture under stress. The rate and position of this 'ossification' is determined partly by genetics and partly by the environment: the more it is used the stronger it gets, just like muscles. And vice-versa: a year of weightlessness in the Space-station or a long-term spell in a hospital bed will see significant loss of bone density.

One of the most wonderful examples of bone remodelling is in the symphysis pubis [L at the 'bottom'] during labour. Like many systems shaped by evolution, the human skeleton is a kludge: trying to optimise a number of vital attributes even when they are competing against each other. In our case, over the last couple of million years we have a) started to walk upright on two legs so we can see over the long grass and carry things with our hands and b) acquired an enormous head: all the better to write The Blob with.  The pelvis has required significant remodelling to accommodate these two competing interests. For best traction in the long run after a dying antelope, we need the pelvis as a solid ring connecting both femurs and providing solid attachment for muscles. To deliver the outsize head of a full term baby [cartooned L as a fat red oval], we'd like some flexibility 'down there'. Amazingly most women achieve this: when it matters the very rigid cartilaginous connexion between the two pubic bones softens up as the constituent protein collagen is partly replaced by a protein called [what it says on the tin!] elastin. That makes a little more space, a little more give, and a marginally easier birth. It is driven by the same changes in hormonal flux that are dilating the cervix and contracting the uterus. I know two women who, after delivery, were unable to restore the status quo ante and retained the flexi-pelvis for months afterwards: it was, and is, for them on a spectrum between uncomfortable and bloody painful.  But for most women that's the way to achieve the best good enough solution: by a temporary change and then back to 'normal'. Engineering - it's often by the seat of the pants: what works sufficiently well is what we get to use.
What follows is a story of pain and outrage and 
not for the faint of heart; I write through tears.

For at least 3 decades, hundreds of women in Ireland were subjected to a procedure to speed the process of birth. In particular is was seen as a more acceptable alternative to Caesarian section in cases where the pelvis was narrower than 'normal'. In some cases, the Ob&Gyn man explicitly invoked John 16:21 "A woman when she is in travail hath sorrow, because her hour is come: but as soon as she is delivered of the child, she remembereth no more the anguish, for joy that a man is born into the world." In other words, so long as a fit and healthy baby [preferably a boy] was delivered, any amount of pain and indignity was what had been ordained. It became fashionable to do a 'symphysiotomy' [cutting through the symphysis pubis with surgical shears or a special circular saw] in the labour ward. There is no way for the pelvis to return to running&jumping mode after birth if it has been cut in half by a patriarchal goon in surgical scrubs. It was also intrinsically dangerous for the baby whose head was precious close to the cutting blade. Symphysiotomy fell out of fashion sometime in the early 1980s and the 1,500 women who were "Survivors of Symphysiotomy" SoS suffered in silence: too embarrassed to talk about things 'down there'; too meek to get angry; to isolated to seek help.

In 1999, in the course of her PhD research into the relationship between the catholic church and the medical profession in Ireland, Jacqueline Morrissey turned up too many cases of the invasive intervention to be credible as "nothing to see here, move along quietly". The current take on the debacle is that repeated caesarian section was seen as leading to a recommendation of sterilisation which was repugnant to the catholic mores of the time. The far more radical symphysiotomy was believed to permanently open up the birth canal, so that women could continue to have babies ad maiorem dei gloriam.  Dr Morrissey's finding percolated out to the media and hundreds of disabled women realised that they were not alone but had been subjected to a mass experiment in dubious birthing practice without their consent, let alone with informed consent.  There is a suggestion that 'experimental' symphysiotomy was carried out in Ireland to perfect the technique for the Third World where C-sections were not generally safe or available.  An early symphysiotomy could make subsequent births easier and less likely to indicate a[n unavailable] C-section.  Whatever the validity of this position, it wholly down-played the subsequent and continued pain and discomfort of the mother.

After the scale of the problem surfaced, there was a predictable closing of the ranks by the Health Service and the Institute of Obstetricians and Gynaecologists (IOG). If you couldn't supply paper-work in the form of hospital records [from, say, 1952!] then your claim was either thrown out or subjected to hoop-jumping scrutiny that tended to exclude equivocal cases. The fall-back position was that symphysiotomy was normal best practice at the time. That was rejected by anyone who took the trouble to look at the data from Sweden or the UK or anywhere else but New Guinea or the Congo, where special conditions applied. A redress scheme was reluctantly instituted in which women who had unequivocal proof of the intervention could claim compo. Pay-outs of €50,000, €100,000 or €150,000 were made, mostly at the lower end of the wholly arbitrary scale. You can see why a cash-strapped exchequer would want to limit access to the funds: 1,500 women x €50,000 is €75million! Why, that's [slightly] more than we pay each year to keep our 200 haemophiliacs in working order. The women were also expected to indemnify the government from any subsequent legal action if they 'took the soup' and pocketed to €50k. Such muzzle clauses are repugnant to natural justice but also to the UN Commission for Human Rights. The Redress Scheme stopped entertaining applications at the end of 2014. Earlier this year, they started to wind-up its affairs and announced that it would shred their accumulated symphysiotomy records this weekend unless individual SoS women came to collect their papers in person from Hawkins House in Dublin city-centre.  SoS and others are objecting to this 'extinction shredding is forever' action and are trying to put a stay on its implementation.

The shredding sounds like further evidence of cover-up and obfuscation by The Man . . . until you hear that the Redress Scheme records are copies of the original files held by the HSE. Nevertheless, here is a valuable consolidated record of a sorry story in the history of modern Ireland that would be useful for research and investigation by historians, statisticians, epidemiologists, human-rights activists. Therein lies the rub: who should/will get access to these highly personal and emotive records?  You've got to have some sympathy for The Patriarchy: damned if they gather and store personal data for no clearly defined reason and damned if they destroy personal information lest it be misused by Johnny Whoever down the line.

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