Death of child with mitochondrial disease

maddyone we had the same with my Mum who had become seriously dehydrated with Alzheimer's.

Her very sensible GP outlined the options and likely time frames: hospital admission and rehydration would give her at most three weeks, stay at home and she would be dead by the weekend.
He agreed to Dad's request to keep her at home. District nurses and extra carers were brought in and the GP came every day.
Mum died peacefully, at home, in her own bed, three days later.
We had all agreed with this and were so grateful.

Whether I would find it so natural to accept that it was time to let a little child go, is another matter.

I’m so sorry Monica that you found yourself in this position, and also that your mother had to make such a difficult decision. Sometimes death is the better option.
When my mother was clearly coming to the end of her life, aged 94, I asked the care
home staff to please not send her into hospital, but let her die in her own bed, looked after by the lovely staff there. They did, and she died peacefully a week later.

Wise words from M0nica, as usual.

maddieone My sister and I had experience, at a distance of the circumstances, your daughter descibes. Our DF was 92 when he died. He died in distressing circumstances after a 3 month illness. He had been fully mentally alert until the last second of his life which made the circumstances worse.

After his death we was suggested that we spoke to the PALS - counsellor - she probably was, who was absolutely amazed that the two of us accepted his death as the natural end to a long and effective life and we had a profound relief that his sufferings in the last few weeks of his life were over. She commented, just what your daughter said maddieone that so many people were angry that their relation had died even when, like our father, it was blindingly obvious that there could only be one outcome.

Monica. How brave your mother was.

How very sad for this family.

It is so distressing when extremist evangelical groups latch onto grieving and desperate relatives to peddle their doctrine.

May this wee lass rest in peace.

MOnica, apologies, I’d meant to acknowledge the very moving comments you mentioned from your mother. I’ve been blessed in not having to make the decision for my children. That has been some comfort as I negotiate the most difficult bereavement I’ve faced so far

I won’t go into detail but, DNR has its place. As does the decision of loving family members to say do not treat 💖💙

There is a difference , a child with brain damage, a child with an illness, both are so devastating

foxie48

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.

My daughter is a doctor too, as you know foxie, and has spoken in the past of having to deal with this dilemma. She also mentioned that sometimes the patients are very elderly with no hope of recovery, and yet the family still want the doctors to keep on trying to keep them alive.

What a sad situation M0nica.

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.

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

Absolutely JaneJudge!

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

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.

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,

So sad.

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?

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.

This is a non judgemental space !

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.

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 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.

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