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:
- Should doctors have the authority to move the baby to only palliative care if a treatment in the US could possibly help him?
- 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?
- Will the baby have any quality of life in the future?
- Are the parents trying to keep their dreadfully disabled baby alive for their own sakes?
- 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.
Stevie Turner 
Situation awful. But if it were my child and there was one ounce of hope I’d take it and take my child for the trial in U.S. 🙂
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Me too.
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A really difficult one. But I think, as a parent, that if I were in their position I’d never forgive myself if I didn’t do everything to give my child a chance.
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Yes, that’s true. Parents need a clear conscience.
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Reblogged this on Frank Parker's author site and commented:
I really believe that recent advances in medical science have raised all manner of ethical issues that simply would not have arisen in the past simply because options such as those under consideration here would not have been available. In some ways this story on Stevie Turner’s blog today, and the issues it raises, touches on the subject matter of my post yesterday reviewing Paul Kalanithi’s “When Breath Becomes Air”. If you’ve not read it, I do recommend it. As a neurosurgeon the author had to face such issues on a daily basis. As a patient he had to face them in his own life and its ending.
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I read ‘When Breath Becomes Air’ too. Such a sad story. Thanks for the re-blog Frank.
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I would hate to be those parents. I think it’s a situation where we need to set aside all appeals to emotion and try to think in practical terms. Whose interests are being served by taking the infant to the US? The parents’? The infant? The researchers conducting the trial (and by extension other infants with the same condition in the future)?. These are the questions I imagine the courts are attempting to answer. And then there is the resource issue. Not so much “who pays” (the parents, the NHS, the researchers) but how does the resulting benefit (as revealed by the answers to the earlier questions) compare to other possible ways of using those resources?
I really believe that recent advances in medical science have raised all manner of ethical issues that simply would not have arisen in the past simply because options such as those under consideration here would not have been available. In some ways the story, and the issues it raises, touches on the subject matter of my post yesterday reviewing Paul Kalanithi’s “When Breath Becomes Air”. If you’ve not read it, I do recommend it. As a neurosurgeon the author had to face such issues on a daily basis. As a patient he had to face them in his own life and its ending.
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It’s a moral dilemma for sure.
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I have always thought that it was the parents that had the deciding factor when it came to their children. When did this change?
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Not sure. It seems a bit harsh to turn off the life support system without first trying the treatment in the US though.
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I don’t think hospitals have the right to lay down these laws, they’re our children after all…
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How would these doctors feel if it was their own child in the bed?
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That would be a totally different story, wouldn’t it?
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Probably, yes.
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Reblogged this on Anita Dawes & Jaye Marie.
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Thanks for the re-blog!
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