Monday, November 2, 2009

UK father fighting for son's life as court decides whether to extend withdrawal of life support parameters

A British court will decide the fate of a one year old boy whose father is fighting the hospital's decision to withdraw life support. According to the Guardian, Baby RB "was born with congenital myasthenic syndrome (CMS), a muscle condition that severely limits movement and the ability to breathe independently. He has been in hospital since birth." The article states:

In the UK an estimated 300 people have got CMS, with varying degrees of severity. Symptoms include muscle weakness, especially in the face; people are unable to smile and suffer from double vision and drooping eyelids.

This is the first case involving a court going against a parent's wishes on the issue of withdrawal of life support from a baby who does not have brain damage. In March, Baby O.T. died after a high court ruled he should be removed from life support against the wishes of his parents. Baby O.T. had a a rare metabolic disorder, brain damage and respiratory failure. Polls and surveys taken indicate the majority of people in Britain feel that this decision should be left up to the parent.

The boy's father will submit a video of Baby RB playing with toys and engaging with his parents to the court. The father's lawyers "argue that the baby's brain is unaffected by the condition and that he can see, hear and feel and recognise his parent".

A new medical evaluation is now being done to assess whether a tracheotomy would allow the child to be taken off a ventilator and sent home.

This tragic case is yet another reminder how little value is given to the lives of those with disabilities. Instead of improving at home care so the issue of whether the child needs a ventilator isn't confused with a quality of life assessment, society continues to tolerate dangerous encroachments on the dignity and rights of people with disabilities.

Update: In this CNN article, it is noted that there are different types of CMS and a lawyer on the case indicated the type has not been identified. It also states:

The Mayo Clinic, one of the leading hospitals in the United States, says on its Web site that "different forms of CMS vary widely in their symptoms, from mild to severely disabling. With accurate diagnosis and appropriate therapy, even potentially fatal forms can usually be treated successfully."


Matthew Smith said...

I've written a letter to the paper in response to an updated article which appeared in today's paper (to be found here. The American friend I refer to is Jenni Taylor, author of this blog. She recently had her seventh anniversary of her injury.

Dear Sir,

I found it rather disturbing that doctors regard Baby RB's life as somehow not worth living even if a tracheostomy can be fitted, because he will still be dependent on a ventilator (Baby RB living 'on a knife edge', doctor tells right-to-die hearing, today). Surely they know that many people with spinal cord injuries require ventilators and are able to live at home, albeit with supervision. I have an American friend who has been in such a condition since 2002, when she broke her neck in a car accident. She is a quadriplegic, but can speak and swallow. She has sometimes complained of the lack of privacy that stems from her disability and the care it requires, but clearly regards her life as being worth living.

Seeing someone deal with severe disabilities is often distressing, but if you could not turn off the ventilator of an adult woman with high-level quadriplegia who is "not equipped to survive without constant, intrusive and painful medical care", how could you do the same with a child?

Yours faithfully,

Matthew J Smith

Ruth said...

That's a great letter, Matthew :) Thanks for sharing it over here.

Matthew Smith said...

You may be interested to know, if you didn't already, that William Peace has posted on this here.