Baby RB - love, life, death and rights

Disabled mother of a disabled child, Emma Bowler considers what the Baby RB case tells us about the judgements that continue to be made about the value of disabled lives

"Tragic”, “unbearable”, “intolerable suffering” – these are all terms used to describe Baby RB, the baby at the centre of the recent ‘right to life’ court case, where an NHS trust and the baby’s mother were pitched against the baby’s father who wants the child to be given the chance to live.

Baby RB had congenital myasthenic syndrome [CMS], a rare genetic condition that severely limits movement and the ability to breathe. He was dependent on a ventilator in order to survive.

This was the first time a British court has ruled against the wishes of a parent whose child does not have brain damage.

In most arguments of this nature lack of cognitive ability is used to deem a life as pointless. Ironically in this case the doctors seeking a “dignified death” for Baby RB had argued that because his brain is unaffected this would have meant his life would have been “unbearable”, especially as he grew older and was “catching glimpses of what others can do”.

What a staggering value judgement about the lives of disabled people and the way we potentially deal with our situations.

It’s actually not that hard to find people who would be rated as very severely disabled who have a much richer quality of life than the average non-disabled person. It’s also not that hard to find disabled people, who were written off at birth by doctors, who went on to “defy” medical predictions either in life expectancy or quality of life. Doctors are not gods, nor are they psychic.

The father’s lawyers argued that a tracheostomy, where a hole is made in the neck to allow air to reach the lungs, would have enabled the child to be cared for at home. Hospital clinicians in court argued against such treatment because of his “miserable, sad and pitiful existence”.

Although Baby RB was difficult to assess because of his limited movement and expression, he was said to have interacted with and responded to his parents, played with toys and enjoyed music. One doctor said Baby RB could have potentially communicated and operated a wheelchair in years to come.

Unfortunately, when it comes to disability many people, including clinicians – whose opinion is given considerable weight in such cases – think it would be kinder to give us a “dignified, peaceful death” rather than consider that we might actually be capable of having happy, fulfilled lives whatever the level of disability.