Tuesday, December 18, 2007

Please don't make this harder than it has to be.

I may have blogged about this before, but I’m doing so again for two reasons. Firstly is the article in last weeks Herald Sun regarding the doctor who carried out the termination of a late-term pregnancy of a woman who threatened to commit suicide as she was told there was a chance her unborn child had dwarfism. The second was on reading the stance of political party Family First in regards to “abortion”

Let me make one thing very, very clear from the outset. I’m not advocating anything, I’m not saying it’s what I would do, and I would never, ever presume to tell any women, man or set of parents what they should do in regards to their own personal circumstances.

My personal view, what I would do, changes from day to day. I don’t know what I would do if faced with a choice I had to make. There are so many, many circumstances in which you have to make the terrible choice as to whether you end a pregnancy or not. And I’ve never been faced with any of them. I feel I have no reference point in which I can say, “This is what I would do”. Saying something, and then being faced with the actual circumstance are two very different things.

Which leads me to my first point – choice. Exactly how far do we want to go in restricting a patient and a doctor’s choice? Let me give you two examples of times when a patient, her family and a doctor are faced with a choice.

The first is a medical scenario. The life of the mother is at stake if a pregnancy continues. We’re talking HELLP syndrome or Pre-Eclampsia, or a range of other medical conditions in which the life of the mother is threatened, or her well being put at stake. Her doctor has a dilemma. He is bound to uphold life and preserve health, but the health and life of the mother will be compromised if the life of the child is not ended. In some cases, we can be reasonably certain as to the outcome if the pregnancy is not terminated – in others it is less certain.

The second scenario is that the child (And please, don’t pick me up on terminology – I’m not a doctor. I’m substituting child for foetus, embryo, etc for the sake of simplicity) has a congenital or other type of defect. These can range from circumstances where the child has no chance of survival past birth, to those that will effect the quality of life of the child – and everyone around it.

In the first scenario, we’re facing a very, very difficult dilemma. The patient and doctor must make a difficult decision. The patient must decide whether to preserve her own life by ending her child’s, or putting both in danger. The only treatment for pre-eclampsia and HELLP syndromes is the delivery of the child. Depending on when it presents, you have the option of delivering the child early and hoping for the best or if the syndromes develop before the child would have a chance of survival if delivered, termination of the pregnancy.

Can anyone, anywhere, feel anything but compassion for patients and practitioners facing this scenario? This isn’t something that either the patient or practitioner ever hopes to be faced with. No parent wants to be faced with that choice. But they are. It isn’t anyone’s fault. There’s no one to blame, and largely nothing you can do to prevent it occurring in the first place. Imagine you are that patients husband, father, mother, sister, friend, partner, lover. Imagine that you and she are faced with this choice. You have to choose between a mother and her child. The doctor has to weigh up what he is ethically, legally and morally entitled or expected to do.

I know there are hard-line Catholics who say that ending a pregnancy in this manner is still murder. But so is the alternative. Refusing to treat a woman who will die if you don’t is manslaughter in the eyes of the law. Making a choice to do nothing to assist is making a choice over who’s life is more important. You choose the child over the mother. YOU STILL MAKE A CHOICE.

Do we really want to make a difficult decision even worse? Do you want the first thing the doctor is thinking about to be what course of action he can legally take? Or would you prefer that the patient’s care be taken into account in the first instance? And having made that choice, whatever it is, do you then want some interfering, crusading politician to become outraged and demand the release of your medical records to the public?

In the second circumstance, we tread into murkier waters. A mother has a Nuchal fold test, perhaps, or an amniocentesis, and discovers that there is a chance – or a certainty – that her child has a congenital or other defect. We could be talking anything from Downs Syndrome to Anencephaly, a huge range of Illness’ that affect the child in utero.

I’m not going into what anyone should or shouldn’t do. I’ve said that, but I’ll say it again here.

My family has a history of Neural Tube Defects and genetic abnormalities, amongst them the two I’ve mentioned above. I have two relatives with Down syndrome on one side of the family, and it’s known to be a genetic condition (Trisomy 21 being the technical term) I know that my chances of having a child with any of the above is much higher than most. I would have to be diligent with Folate, get genetic counselling, a CVS test, the works. And then, I might be faced with a choice.

Anencephaly is a Neural Tube Defect wherein the skull and most of the brain of a child does not form. Death typically occurs before or during childbirth, and if it doesn’t, it is typically minutes to hours before the child dies. There is no possibility, none at all, of the child gaining anything approaching consciousness. Would you force, LEGALLY FORCE, a woman to carry a child knowing this will be the outcome? Would you personally make that decision for a woman, without consultation to her doctor, her medical history or, more importantly, herself?

I have no idea, no idea at all, what I would do in most cases. I can’t know – I have never been faced with the decision. But I do know this – I would like to have a choice. I would like to be able to sit down with medically trained staff, my family, and make a rational decision. I don’t want that decision to be in the hands of a group of people who argue, prevaricate and use issues to further their own agenda for a living. I want the man in the green coat who studied whatever I’m going through for a very long time, and had my case information in front of me to be able to do what his training tells him, sometimes, has to be done.

I want parents to be able to make choices for their children, no matter how hard those choices are. I want them to be supported, shown compassion – I sure as hell don’t want their choices made harder by pieces of legislation that cannot possibly help make these decisions and scenarios any easier.

Oh, and to those who are "Pro-Life" - stop calling yourselves that. Because no-one, anywhere - no parent, no scared young girl is pro-death. They are pro-choice. Be honest. You are ANTI-choice.


~Denise~ said...

Thank you for your post. I'm a HELLP survivor, so I came across your blog via a google alert I have set for HELLP/pre-e.

I know women who have faced these exact situations you described. While I wouldn't hope anyone would need to be in the position to make a choice, realistically it does happen. To make an awful situation worse by making the woman, or couple, out to be the worst people in the world for their decision. The choice must be available.

Thank you again.

Keri said...

I'm so sorry you had to go through that, and thank you for your comment.

We do need to have the reasons why parents have to make tough choices put out there, and hopefully this helps in a small way.

Lily Lane said...

I stumbled came across this post while browsing through blogs from Melbourne.
Thankyou for a very sensitive and intelligent treatment of the topic, although I don't agree with you on everything.
I am pro-life, and am ready to defend that terminology too. I am neither religious, nor do I stand to gain anything at all from my stance other than, I believe, a clear conscience.
In many ways I am also pro-choice; in the circumstances you have described above I would certainly advocate that a choice be given to the parents of the child, and that the right to advise should be given to doctors. This is because the value of life itself is so strongly tied to the quality of life. Illness and disability create grey areas; many ill and disabled people can lead fulfilling lives, but on the other hand there are plenty who can't. Unfortunately parents can't look into the future and see which it is their child will have, so they must use their best judgment to decide whether the quality of life they and their child can have is likely to be satisfactory. Of course I think parents should be legally allowed to make this choice.
On the other hand, the right to choose is so frequently abused. It makes me sick to the stomach thinking about how many people choose what I see as wrong. Human life itself is the most precious of all things in existence, yet it can be thrown away so easily out of laziness and fear. Being single and carrying a child, or being sixteen and carrying a child, are not desperate situations like those you described. These women have plenty of options available to them, especially in Australia. I believe women who kill their children when they have other - better - options are committing a hideous crime against those children, against themselves, and against humanity. It is equal, probably worse, than murder, especially as a healthy unborn baby exists in a state of perfect innocence and vulerability.
The right to choose is necessary, but it should also be conditional. With rights come responsibilities. We have the right to drive, but if we don't use that right responsibly it is taken away because we are unnecessarily putting lives at stake. Innocent lives are at stake in the case of abortion too, and the law should make us responsible for using it wisely.

Keri said...

Lily, I can't say I disagree with you completely. Personally, I don't think I could end the life of a child I was carrying because of lifestyle reasons, but at the same time, I've never been in that position, so I find it hard to judge someone who is.

I disagree with the term "Pro-Life" because it suggests that anyone who isn't is Pro-death, and this is deceptive. But terms mean different things do different people, don't they?