For some families who need to bring their child to hospital, they face the unbearably sad reality that they don’t get better. Families like Fiona and Martin, whose little boy Jamie sadly died at just nine months old.
Mum Fiona says: “Jamie was a very chilled out, happy little chap. He liked cuddles, hated bath time and having his nappy changed.
“He loved his stuffed animals, particularly his dinosaurs. He had a very prominent quiff in his hair. We call him our strong stegosaurus.
“Jamie was born with a number of challenges; bone marrow and muscle tone issues and extra fluid in his brain. We were told he might never walk or talk, and probably wouldn’t live to adulthood.
“The children’s hospital became our second home. At first, they were focused on how to get Jamie home. Then, the conversations started to change. We had run out of options.
- Fiona, Jamie's mum
“You’re never ever prepared for those conversations. We never thought we’d have a piece of paper saying, ‘Do not resuscitate’. It’s terrifying.
“Because we felt so safe and cared for by the NHS, we chose to stay in hospital for Jamie’s final days. It gave us time together to say, ‘we love you’. He died in our arms on a Sunday morning in August.
“It makes you numb, helpless. We had been driven by hope, but suddenly there was nothing. By lunchtime we were home without him, working out how to register his death.
“You feel like you let him down. We’re his parents. We were supposed to be able to protect him and we hadn’t. We hadn’t managed to keep him safe. That guilt eats away at you.
“During Jamie’s time in hospital, the NHS looked after three people, not just one. It was overwhelming how many of the hospital team came to his funeral. They loved him too.
“The support ECHC gave brought joy at a really difficult time. We were terrified we were going to forget things about Jamie – how tiny his hands and feet are, the curl in his hair, what his little fingerprints looked like. The memory making activities we did meant so much to us.
“It was so personal to us. They took our handprints and turned them into stegosaurus dinosaurs. The day Jamie died we were given three elephants – knitted by ECHC volunteers. They remind us not only of our son, but of the kindness of strangers. It helped us realise we weren’t on our own.
“There aren’t enough words to tell you how important memory making is to parents who know they are going to lose a child.
“A cast of our hands sits in our hallway; a lovely reminder of the three of us. There might now be two people in our house, but we will always be a three.
“Jamie is the biggest part of our lives. We’ll never forget him. ”
Each year, our wonderful colleagues in NHS Lothian support around 50 families whose child dies at Edinburgh’s Royal Hospital for Children and Young People. That’s one family every week. And we’re here to support them every step of the way.
By donating today, you will help families like Jamie’s cope with life without them. Thank you.