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Death with dignity: A reflection on Alfie Evans

I’ve been sorting my office this week. Whilst looking through old files I found a letter that made me stop in my tracks as memories came flooding back. 

This note was sent by the parents of a baby I nursed a very long time ago – thanking me for the dignity I gave their dying child.

In view of Baby Alfie, I thought I would write about children, death and dignity. Not to make judgements on those involved or even give any answers. I just want to tell stories and ask you to pray.

I used to be a nurse working in Neonatal Intensive Care, and then a children’s medical ward, where many life limited children were cared for.

Parents are losing their children through illness, syndromes and other disorders every day. Their child doesn’t get into the news, no crowds are shouting for their child to live;  theirs is a private grief.

Speaking as a nurse I can honestly say, every child I cared for took a little piece of me when they died. It will be the same for anyone in the medical profession who care for children who die. It will be the same for those who cared for Alfie over many months.

The baby Alfie case raised a lot of questions about life and death– made all the more emotive because he was so young. But in reality, there are hundreds of Alfies out there. Parents are losing their children through illness, syndromes and other disorders every day. Their child doesn’t get into the news, no crowds are shouting for their child to live;  theirs is a private grief. I’m sure that some of those parents are now feeling guilty because they didn’t fight like Alfie’s parents did. But they have no need to feel guilty. When a child’s death is inevitable, there are no right or wrong ways to respond – if you are that parent, please don’t feel guilty. But, neither were Alfie’s parents wrong to fight.

The memories that came back after finding that letter were heightened because of Alfie, who at that point had just had medical care withdrawn.The little one mentioned in my letter had a severely malformed brain. He lived with pain, fits and other ailments that were distressing to him and his parents, to the point his parents walked away as it was too painful. I nursed this little chap for all of his life until he died in my arms, but he died with dignity. This too was a case of medical treatment being withdrawn, but the difference it made to that baby was amazing. He became peaceful; he smiled at me more and responded well to the songs and cuddles I gave him as I cared. His personality was intact, but the parts of his brain that kept him alive were dying (with no chance of a cure).

What do we think about this as Christian parents? What I can say is, to lose a child hurts like hell. We have that assurance we will see our little one again in heaven, but that doesn’t stop the pain. The royal birth last week will have heaped even more pain on top of this.

How do we view it as Christians if we have never had to deal with the loss of a child, whether ourselves or supporting a close friend or family member?

Throughout the whole Alfie case, I have been struck by the vehemence of some areas of the church in shouting about the sanctity of life. Can you imagine what that has done to people who have had to make the choice to remove medical care for their own loved one?

I believe in the sanctity of life, but I also believe in a dignified death, where parents can be prepared and say their goodbyes in an unhurried way.

I’ve nursed many children through to death, and have many stories of death with dignity. In particular I remember one young teen. In the moments before he died, he pointed to the end of his bed and said “Look, there’s Jesus. He’s come to get me. I’m going now”

Not every child will have that, but there is peace in seeing death with dignity; still grief, but for the child, peace.

Pray for Alfie’s family. But as you see the media following the aftermath and the funeral, please remember the thousands of other parents who have or still are going through this. Alfie’s death will bring back so many memories and may cause parents to relive the final moments they had with their child. For some it will be pure grief, for others it will be bitter sweet. These parents have lost a large part of themselves.

I’d like to finish with one verse of a song that many of us sing with gusto. It’s one of my personal favourites too.

“The sun comes up, it's a new day dawning. It's time to sing Your song again. Whatever may pass, & whatever lies before me. Let me be singing when the evening comes”

For many bereaved parents it’s a difficult verse to sing. Despite the fact that our little ones will always be in our hearts and the pain of loss always there, I pray you will be singing when the evening comes.

Written with love x

 

Written by Kay Morgan-Gurr

Chair of Children Matter, Co-founder of the Additional Needs Alliance, part of the Evangelical Alliance Council. Blog: “Pondering Platypus”  kaymorgangurr.com

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