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."