On my BBC News app is a photo of a baby boy who has been hooked up to a life support machine since October last year.  He suffers from a rare disorder that affects the genetic building blocks that give energy to cells.  Doctors have told his parents that he cannot hear, move, cry or swallow, and that he is only breathing because the machine is doing it for him. Also his brain is failing to learn to see because he cannot open his eyes for long enough.

Specialists at Great Ormond Street have told the baby’s parents that he should be moved to palliative care only, but his parents want to take him to the US to undergo a trial treatment.  Judges have ruled that the baby should receive treatment until today only, but now the European Court of Human Rights is currently considering the case after the parents’ appeal to the Supreme Court failed.

This scenario to me poses several different questions:

  1.  Should doctors have the authority to move the baby to only palliative care if a treatment in the US could possibly help him?
  2. If the baby belonged to one of the specialist doctors, would they want him moved to palliative care or instead taken for a trial treatment in the US?
  3. Will the baby have any quality of life in the future?
  4. Are the parents trying to keep their dreadfully disabled baby alive for their own sakes?
  5. Is it kinder to the baby for doctors to switch off his life support machine?

It’s a tough one, and one I expect where there are lots of different opinions.  What’s yours?  I would say to take him to the US for a trial treatment, but if that doesn’t work, to then allow the doctors to switch off his life support machine.  But then, I am not his mother, and it’s a mother’s duty and instinct to preserve the life of her child.

By the way, my mother-in-law was faced with a similar problem in 1960 when she gave birth to a Down’s Syndrome daughter who was not able to feed properly.  She was told by doctors to ‘just let her slip away’, but she took her home and persisted with trying to feed her every half an hour night and day for months and months, despite getting next to no sleep and with 3 other children to look after.  Her daughter grew up severely mentally retarded and lived for 46 years, but needed constant care and attention and could never be left on her own.  However, I think she gave my mother-in-law a reason to live and made her feel needed.  Mum-in-law still mentions her daughter in most conversations even 11 years after her death.