Would Not Want To Make This Decision

[david63]

I am glad that i am not in the position of having to make the decision of spending £1.8 million on gene therapy for one baby (https://www.bbc.co.uk/news/uk-57309613) when it could be spent on procedures/treatments for many others.

I am fairly certain that this decision was taken at a very high level in the NHS and that there is probably more to it than we are aware of (not to mention the "discount" that has been negotiated). Not sure at what level you can put a price on one life.

I wish baby Arthur all the luck that this saves his life

[Manoverboard]

It is simply not possible to save every threatened life so perhaps this is more about the ongoing development of Gene therapy than saving the life of one unfortunate little boy ... however sad that would be for the parents.

[Onelife]

I watched this story and my initial thoughts were that it was a lot of money but then quickly put myself in the shoes of the child’s parents and at that point it became priceless.

The interview stated that children with this rare condition generally don’t survive much past three years, however with this gene therapy life expectancy is longer and less debilitating for those affected.

When you consider the ongoing 24-hour care that would be required for children with this condition then I think it’s the way to go.

But perhaps more importantly the research aspect to this kind of therapy could have benefits for us all in the future.

Oop's didn't see your post Mob

[oldbluefox]

Medics and parents have to face some dreadful dilemmas and decisions when faced with babies with life threatening illnesses. It's a situation I sympathise with entirely on the one hand giving a baby the chance to have a purposeful and enjoyable life but on the other it's sometimes a case of saving their life but condemning them to a lifetime of drugs treatment, numerous operations only to find themselves in a wheelchair or worse still,bed bound and ultimately going into residential care.
Sometimes I do wonder if it would be kinder to let them go but thankfully I do not have to make that decision.

[Onelife]

Its one of them isn’t it Foxy….at what point do you determine the ethics of keeping someone alive where there is no quality of life. I don’t think this is the case with little Arthur but we have all seen cases where letting go would be a much kinder thing to do. The problem is getting parents of theses unfortunate children to accept this and not cling on for miracles that rarely happen in these situations.