Death of child with mitochondrial disease

The child is at peace and out of pain Thank God for that

Poor little poppet.
I can’t imagine what the parents are going through today.
What a very sad case.

We know of a family whose toddler died of this same condition, it was heartbreaking.

Very very sad. Poor little thing.

There is nothing Christian about prolonging the suffering of a child.

There is nothing good about prolonging the suffering, but I think if I was that parent I would cling to every hope and not be capable of rational thought.

This organisation is a Christian extremist evangelical organisation. They are to main stream Christianity. what the Taliban or regime in Iran are to mainstream Islam. (I am not suggesting Christian Concern is violent in the way the other two are).

Here is a link to the Wikipedia entry on them en.wikipedia.org/wiki/Christian_Concern It makes nteresting reading.

I think it would be very natural to cling on to any hope available.

I completely understand the parents clinging to hope, and I hope they can find comfort in their family and friends.

Christian Care’s involvement must have prolonged suffering.

Thanks for the Wiki link MOnica.

Absolutely agree Midnightblue such a tragic situation for the child and family.

I think sometimes you do have to accept that someone, child or adult, is terminally ill.

Surely it would have been better to spend quiet time with their child rather than needing to find times to liaise with this group, prepare evidence, go to court etc etc.

When my sister was fatally injured in a road accident, my parents accepted that to fight to keep her alive was to condemn her to life in a vegetative state - and death was preferable to that.

This child had no prospect of a recovery or cure, just a longer slower death.

It’s very hard to be a parent with an average accident prone child but to have a sick child is beyond my understanding.

I could never live with a baby being so horribly sick. Every single day I would be wondering if the little mite was suffering and in excruciating pain but unable to say how much it hurts. So I would not hesitate to let the child go. It's cruel and selfish to keep a suffering baby alive just to satisfy your own needs, and that is what it is.

This is a non judgemental space !

Anniebach, Chestnut is being non-judgemental. She is stating in non-personal terms what she thinks, not judging the parents in this case.

I would say that I think babies can and do express pain, by their vocalisations and actions:crying, screaming, wriggling, facial expressions. etc. This is why how much pain the baby is in is one of the reasons doctors give for ceasing treatmen, where the pain cannot contribute to the childs recovery.

But there was a young baby a couple of years ago who was not even capable of crying. He couldn't show any feeling at all. I can't remember what was wrong with him, but he was completely unable to express anything. It was heartbreaking. He was locked inside his own tiny body and yet his parents wanted to keep him alive despite having no idea whether he was suffering. Is that in the baby's best interest or is it just the parents' need to hang onto him?

So sad.

I think with these parents who find it difficult to accept that a small baby is terminally ill and is going to die in the near furure, there are complex psychological factors involved that stretch back far beyond the crisis to hand,

My daughter has worked in intensive care units and says the most difficult aspect of the work is telling relatives that a loved one is not going to recover and she feels the best thing for the patient is to remove life support. Sometimes relatives disagree with her or between each other, usually they just need time to accept that their relative is not going to recover but it's often very stressful even when the patient is someone very elderly. I do urge people to talk to their relatives with regard to what they would want as it removes any feelings of guilt if they haven't tried to keep their loved one alive for as long as they can.

None of us have the right to judge a child’s loving, desperate parents. I think we are allowed to judge this charity though

Absolutely JaneJudge!

I agree with MOnica, that there are times when we have to accept that death is waiting and can be (almost) welcomed. Extreme faith groups create more suffering

My mother said to me 'I never thought I would ever sit beside the bedside of one of my children and pray for their death, but given what her condition would be if she lived (vegetative state), I could do no other'

She knew the extent of my sister's brain damage and did not try to pretend there could be any other outcome than that the doctors told her.

What a sad situation M0nica.