When will my baby die?

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.

Dear Terje,

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.

Yours Sincerely

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?

5 thoughts on “When will my baby die?

  1. Well seeing you asked.

    I think what they did to that child was horrendous. They basically starved it and denied her water so she was also dying of thirst.

    They can of course argue about the law, however the law is one thing and balancing out the way she died and the what the law allows I would have opted to try and give the kid a chance to die of natural causes.

    We can of course say the parents were stuck between a rock and a hard place, but allowing the kid to starve and die of thirst is just horrendous.

  2. As this story supports, euthanasia, even of children, is far more humane than the current method.

    I think if the parents consult with a doctor (perhaps two) and get some form of doctor’s certificate explaining the circumstances, that would be sufficient.

    I assume that even crooked doctors wouldn’t want to be linked in any way with infanticide. They’d never get another customer.

  3. I sincerely hope I am never, ever put in the position Kerry has had to face. To be able to put this story to paper shows incredible strength, more power to her.

    Surely the only difference between what has happened here and active euthanasia is a matter of perception. Why is delaying the inevitable in a cruel and callous manner viewed as the morally superior choise by the fantasists (abrahamists)? Get religion the hell out of legislation, and out of our personal lives.

    Doctors take an oath to “above all do no harm”. Is it just me or is starvation and dehydration just a little bit harmful? I am sure most medicos when confronted with a situation such as this would be willing to do the humane thing. To that end I suggest perhaps a independent panel of say 3 doctors and 2 judges be formed to decide such cases, with cases referred by the subject themselves, their family or their medical practitioner. Although the views of the family and the medical practitioner must carry some weight the best interests of the person involved must be paramount.

    If a method such as this was available it would neatly sidestep the infanticide problem.

    As to the current state of play, how does denying a child the very basics not constitute neglect and abuse of a child? Can the parents potentially sue the government for forcing their child to be abused by medical practitioners when a viable, much kinder solution is available although currently illegal?

  4. Hello everyone,
    My name is Kerry, I am the mother of the little baby in this story, I would like to add that her name was Melissa.

    I would like to thank you all for taking time to comment and as I have read your comments, I would like to respond to them. If I seem a little upset or angry in response to any comments, please do not take it personally, I am a straight shooter and like to be direct in my approach to this topic, which is rather a sensitive one for me.

    First I would like to respond to JC – It is easy to be on the outside and know exactly what you would do if it were you. I agree with you when you say her death was horrendous, no-one knows that more than I do, exept for the thousand of mothers, fathers and other family members, who have lost a baby or loved one in similar circumstances. Yes thats right, thousands, maybe more. I guess like me, you didn’t think it happened in our democratic society, where we are co signatories to the 1948 Universal Declaration of Human rights and The convention on the rights of the child, yet we dont exactly have the best track record, in these areas. Oh and I might add, this happens every day in every hospital, Have you heard of palliative care and the way they manage pain with morphine? Guess what? they become virtually comatose just like my baby did and eventually stop eating/drinking. As a result organs lose their ability to function properly and as they can no longer maintain themselves the body slowly shuts down, body temperature drops, breathing slows, death is imminent and the end result. Doctors in these situations tell you half truths, you get half the prognosis, no-one ever told me she would die of thirst and starvation. She was meant to die as a result of not being treated, if I believe what I was told. Every day was to be her last and she hung on day after day, I didn’t even realise that she was starving to death, I was so distraught. I prayed everday that this would be her last, so her suffering could be over. If I could go back, knowing what I know now, that would never happen, I would find a way to end her life, quickly and humanely, despite the consequences.

    In response to Patrick, I agree with you totally, infanticide would most certainly be better than the current method. As far as crooked doctors go, I believe that doctors in these situations are still acting in the best interests of the child, in the sense that they are constrained by laws that do not cater for the needs of the terminally ill. Starvation is the end result of excessive pain relief, and as the begrieved mother, I can only hope that it served its dual purpose in offering her pain relief as well as death.

    I would like to respond to Cameron also, if I thought for one second that suing the government over the nature of my daughter’s death, would make any difference in preventing this from happening to another human being I would. I have often wondered how it would pan out if I did. I believe that the nature of her death constitutes some serious breaches of the Universal Declaration of Human rights & Convention on the rights of the child. Perhaps I would have a case. I would welcome any comments from anyone, particulary anyone with expertise in this area, as I am not a legal academic. I will however cut and paste articles from both below, of which I feel is relevant to breaches of my child’s rights

    Article 3.
    Everyone has the right to life, liberty and security of person.

    Article 5.
    No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

    Article 25.
    (1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
    (2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.


    Article 3

    1. In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.

    2. States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures.

    3. States Parties shall ensure that the institutions, services and facilities responsible for the care or protection of children shall conform with the standards established by competent authorities, particularly in the areas of safety, health, in the number and suitability of their staff, as well as competent supervision.

    Article 19

    1. States Parties shall take all appropriate legislative, administrative, social and educational measures to protect the child from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual abuse, while in the care of parent(s), legal guardian(s) or any other person who has the care of the child.

    2. Such protective measures should, as appropriate, include effective procedures for the establishment of social programmes to provide necessary support for the child and for those who have the care of the child, as well as for other forms of prevention and for identification, reporting, referral, investigation, treatment and follow-up of instances of child maltreatment described heretofore, and, as appropriate, for judicial involvement

    To the best of my understanding, the nature of my child’s death contravenes all the above articles taken from the Universal Declaration of Human Rights and the Convention of the Rights of The Child.

    Regards Kerry

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