This is a guest post by Sarah Ismail. Sarah blogs here.
A one year old baby boy, who can be known only as Baby RB for legal reasons, was born with a rare genetic condition called congenital myasthenic syndrome and has been in hospital since birth.
Now, the hospital wants to withdraw Baby RBâ€™s life support, because they claim that his quality of life is so low that it would not be in his best interests to try to save him. So his parents are going to the High Court- with his mother reported to be supporting the hospitalâ€™s bid. The parents are â€˜amicably separatedâ€™ but both are reported to have spent long periods of time at their sonâ€™s bedside.
The fatherâ€™s lawyers argue that Baby RBâ€™s brain is not affected. He can see, hear and interact, and enjoys listening to music and being read to. They are submitting footage to the court, which they say showâ€™s Baby RB playing with his toys. Christopher Cuddihee, a solicitor acting for the father, told The Sunday Telegraph: “This is a tragic case. The father feels very strongly that Baby RB has a quality of life that demands the trust should continue to provide life-sustaining treatment. “The father clearly adores his son and hopes to demonstrate to the court that the trust’s application should be rejected.”
Now for my reactions to this case. I just canâ€™t believe that the hospital would even consider withdrawing the life support, especially when you consider that people with Baby RBâ€™s condition â€˜can expect to live a relatively normal life with medication,â€™ according to BBC News. Yes, Baby RB appears to be severely affected by his condition, but the most important thing to remember is that this is not his fault. He did not ask to be born with his condition, and I certainly donâ€™t think he deserves to die as a result of it.
As a disabled person, I know several people who are severely affected by disability. They cannot walk and donâ€™t have verbal communication, but they are all extremely intelligent. Thanks to the support of their families, they have all led good lives, of which, I am sure, they would change very little. Thatâ€™s why I have only good wishes for the baby, and I agree with and support his fatherâ€™s efforts to keep him alive.
However, I understand and accept that this is a subject on which you may not agree with my opinion. So Iâ€™m asking you to share yours with us. Should Baby RB be allowed to live a life of the best possible quality for as long as possible, or should he die too soon, simply because a hospital is not prepared to provide him with the support he requires?
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Filed in: Disability,Science