My brother in-law once commented that on becoming a father he was surprised by the realisation that he would die for his children. I replied that I was surprised by the realisation that I would kill for mine. The paternalistic instinct of a father can be intense. However it is nothing compared to the maternalistic instinct of a mother. Mothers worry and suffer on a whole other plane when it comes to the well being of their little ones. So imagine the anquish of a mother that must watch her baby slowly die. I encountered such a mother via facebook. Kerry shared her personal story with me via an online discussion and has given permission for me to share some of it here.
I would like to thank you for your honesty. It certainly does not bother me, that you are politically affiliated, particularly since the party you are affiliated with, is in support of voluntary euthanasia. You are absolutely correct, I am motivated by my personal experience, of which I will sadly share.
In 1988, at 36 weeks gestation, I discovered through an ultra sound that my child would be born with spina-bifida. From the onset the prognosis was that she would not live.
Her subsequent birth at 37 weeks gestation, attended by specialists from both the Royal Women’s and Royal Children’s Hospictals, confirmed the worst. The severe degree of spina-bifida and associated hydocaphelous would ensure that she would be unlikely to deveop beyond the capacity of a new born. In addition her level of paralysis would prevent her form ever walking or sitiing unnassisted. For her to live, she would have to undergo countless operations, none of which would make her well. Heartbroken, envisaging a life of hell for her should she live, we reluctantly made the awful decision not to treat her, upon the advice of specialists.
Following our decision, it was conveyed to us, was that she would be offered pain relief to keep her comfortable; and without treatment she would die of her own accord. However it was not that simple.
The use of phenobarb to keep her comfortable, kept her virtually comatose, waking only occasionally. Initially she received about 100mls of milk per day, however this was discouraged. It was actually expected that she would only live for up to two weeks. She was a little fighter and
as her tiny body became resistant to the effects of phenobarb, so the doses increased. By six weeks into her life she was getting no food or water. When she woke, she was given more phenobarb, when I complained about her dry mouth, they were moistened with vasoline, Yet she lived for another four weeks. In reality, and it distresses me even thinking about it, my baby was starved to death. A nurse in the ward where my daughter was hospitalised, stated that ” There are around 70 babies a year that die in similar circumstances in that ward”. This is in one ward alone!
How many people die in this manner, under the guise of palliative care? I do not know, but I know form my own experience that this is what happens.
I am consumed with the guilt that I feel, that I let her die in this way. However I didn’t feel that I had a choice at this time, as there was no other alternative and I absolutely believe her life would have been hell. I have other loved ones who have since died, with the palliative care process being the means to the end. These were adults who would have preferred to have the alternative of euthanasia. How many people have to die this way, I wouldn’t wish it on my dog, and fortunately for my dogs, they don’t have to worry, for should the time come, I would most certainly offer them a painfree, dignified death. Imagine the uproar if I starved them to death.
I find that fact that animals can be euthanased, a huge contradiction to the value of life. How is it that we can extend such empathy and consideration to animals, and I understand the terms of not killing the innocent, do they? When I say they, that could mean a number of people, organisations, institutions, all of whom have the power to influence policy.
I know this has been a bit long winded, at least you now understand my perspective. I have been working quite hard, to improve my own situation and education, to be able to tackle this and other issues of concern.
I am currently studying and I am in my final year of a Community Development Degreee. Having completed a Diploma in Social Welfare, I intend to put my newly found skills and passion to good use, and intend to fight for the rights of all Australians, to have control of their own individual, end of life decisions.
If you are still happy to lend your support, or their is some level within the party where I can become involved. Please don’t hesitate to contact me.
Our encounter was not mere chance but came about via a euthanasia cause I started on Facebook some time ago. Kerry wanted to know what we could do to change the law in regards to voluntary euthanasia and it is clear from her comment above that I discussed my own political affiliations. I mentioned that her personal story is representative in some ways of what opponents of such reform would fear. That if we legalise voluntary euthanasia for sane adults, then what do we legalise next? Kerry acknowledges this point.
I understand that many people, not just on a political front, are opposed to the introduction of legislation, that would legalise or decriminalise voluntary euthanasia. This being confrontonting enough, I imagine that the thought of euthanasing children, regardless of their suffering, would not only be a taboo subject, but would be met with fierce oppostion.
My personal view is that the answer to the moral quandary posed by Kerrys story isn’t something that can be codified in law, at least not in any manner that is entirely satisfactory. Should infanticide be legal but rigourously regulated, or illegal but selectively ignored? I’m actually somewhat inclined towards the latter but I don’t pretend that there is anything easy about such judgements. When does humanity lead us to ignore the law, and when does the law lead us to lose a small piece of our humanity?