Monday, 1 June 2015

Micro preemies and the disability bias

I read an article this weekend about the ethics of treating micro preemies.

The article talked about how the commonly accepted protocol right now is to deny life saving measures to babies born before 23 weeks. One of the reasons given for this policy is the large percentage of these babies who end up having disabilities including cerebral palsy, blindness, lung disease etc. However, a small number of these babies, even those born in the 22nd gestational week, survive and prosper with no discernible disabilities at all. 

An excellent point that was brought up was the inconsistency of how and when doctors recommend life saving measures. Because if a teenager was badly hurt in a car accident, that all efforts would be made to save their life, even if there was only a 22% chance of surviving and a 9% chance of escaping without disability. These are the exact statistics of the survival and disability rate of micro preemies born at 22 weeks.

It was also mentioned that babies born with Down Syndrome are treated with life saving measures, despite the fact that almost all of them will grow up to experience serious disability. It has finally been recognized that it is unethical, immoral and unconscionable to deny medical treatment to an entire group of people solely based on their diagnosis or their disability.

However, when looking at the micro preemie issue, it is easy to see the disability bias which continues to runs rampant through the medical community. There is no other reason for doctors to deny or withdraw life saving measures to micro preemies other than the high chance of disability.

This article brings up some important questions which need to be examined at a deeper level.

Why are doctors counselling against life saving measures in the case of micro preemies if there is a chance that these babies lives can be saved? 

Why would a doctor counsel one set of parents to pursue all options to save a child, and counsel the second set to let their child die where the only measurable variable that differs is age?

Why is disability so frightening to these doctors that they believe that it is better for babies to be dead than to live a life with disability?

Why would you think that it is better to grieve a dead child, than to have the experience of raising a child with a disability?

What makes doctors experts in the quality and value of a life, with or without a disability?

Why do doctors feel that it is their right to attempt to qualify what a meaningful life entails?

There are questions I am still trying to answer for myself, because they are totally bewildering.

I can't understand how a doctor with little to no experience with disability themselves would feel competent to counsel others on what to do in the case of child having a life long disability. What insight could they give?

How could they possibly understand the joy and heartache that can go hand in hand? How could they understand the fierceness for which you fight with your child to make slow gains? How could they know the feeling of bursting pride when a new skill is learned? How do you quantify that? How do you measure it?

How do you measure the impact of a child's presence in your life?

The answer is, you can't. You can't qualify these things. And because you can't, they are ignored by the medical community.

So that parents of micro preemies aren't told about the positive aspects of parenting your child with disability. In fact, they are often actively discouraged from letting their child live as well as being given the worst case scenario for the child's outcome.

I have to wonder, how is this possibly considered to be best practise? How is this the ethical way to treat parents and children at one of the most vulnerable times of their lives?


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