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Reflections on Death- End-of-Life Stories

Reflections on Death- End-of-Life Stories

I wake in the morning and the first thing that hits me is sadness. All I hear is silence. Not a delightful silence, but the deafening kind. Since Baby John died I have been struck by how quiet it is without him. This tiny boy, who hardly made any noise so filled the house with life; and without his little babbles, oh how quiet it is without him.

Sadness, and quiet.

Yet in the sadness I am grateful for the time spent with him. I am grateful to have been his mother, to have been the one to hold him, so give him life and nurture him. Of my three babies with ARC syndrome John was the only one to did in a hospice. Michael died in hospital. His death felt brutal and so sudden. He passed away after contracting pneumonia, it was quick. We had thought he was doing well the days leading up to it, he had gained weight- he’d reached 3kg, for the first time since he was days old. This was a mile-stone for me, I had been hopeful. Then he was gone.

Michael (6)

Lucy died at home. We knew she was nearing her end. He body was slowly giving up. We spent a week with her at home. We did life around her that week. I was grateful that we could, that we could all surround her in love. That we could all say “good-bye”. But being at home with her, and her siblings also meant doing all the other “stuff” of life- cooking, laundry, messes, child-care, nipping to the shops….

Then there was her final hours- the administration of “end-of-life” drugs, this stuff is serious, we were on our own. It turns out that the dosing of these drugs in infants in not fully known. You are administering drugs which have not went through full clinical trials in those circumstances, on such little babies. The evidence is gathered on a case by case basis. It felt that there was a lot of subjectivity. She deteriorated over-night, and in that situation you don’t want to be dealing with out-of-hours GPs. The stress, and fear in that situation is horrendous. Our palliative care nurse was wonderful, she guided us through, and calmed our fears, I will forever be indebted to her, but she couldn’t be with us 24/7.

ARC syndrome baby

John died in Rachel House Children’s Hospice. We knew he was reaching the end. His body began to give up like Lucy’s. The tale-tale sign of requiring morphine regularly for a non-specific problem, when only morphine can stop the moaning, then you know. We went on the Sunday and he died the following Saturday. He spent the week in my arms, surrounded my love, cuddled, kissed. He knew he was being loved, even through the morphine- he made sure people knew if mummy wasn’t holding him. The hospice enabled us to focus on John. They took care of the other children, they fed us and did all the life- things you don’t want to have in your head.

They also took the stress of knowing when and how often to administer the end-of-life drugs. In his final hours I did not worry if I was giving him too much or too little morphine or midazolam; when they did not work they could try different drugs we would never have been able to access in the community. We could cuddle him and pray with him, so he would know love, and peace, has he transitioned from life with us to being with his Heavenly Father.

Baby John

After John died we stayed and were able to spend time with him for a few days, before the undertaker took his body away. We came in and out of his room, where his body lay, we said our good-byes. The whole experience was so much more gentle. The hospice is a place children go to die, but it is also a place where they do to live. John lived his life full of love right to the very end.

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