The parents of a Scots baby who died at just nine-months-old have told how the kindness of strangers got them through the loss of their child. Little Jamie Elliot was born in December 2018 with a number of severe complications, including fluid where his cerebellum should have been as well as hearing and sight loss.
Parents Fiona, 35, and Martin, 36, from Edinburgh, were warned that the youngster was unlikely to survive to adulthood and would never walk or talk. But after exhausting all treatment options, baby Jamie passed away peacefully at the city’s Kids Hospital in August the following year.
In the hours after his death, they were given three stuffed toy elephants which had been knitted by volunteers for the Edinburgh Children's Hospital Charity (ECHC) - a gesture which helped them realise they weren't alone.
The couple are now backing a new appeal run by the charity called 'Never Forget' which funds memory making activities like hand and foot casts, charms and personal quilts. Fiona and Martin explained how the special activities provided by the charity have ensured they’ll never forget their baby boy.
Fiona said: “There aren’t enough words to tell you how important memory making is to parents who know they are going to lose a child. 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 were so personal. 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.
“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.
“Jamie was a very chilled out, happy little chap. He liked cuddles, hated bath time and having his nappy changed, and loved his stuffed animals, particularly his dinosaurs. He had a very prominent quiff in his hair. We call him our strong stegosaurus.”
The grieving mum explained how the hospital became their second home as medics tried to diagnose and treat little Jamie.
She said: “We never found out what was causing the combination of Jamie’s challenges and likely never will – he remains undiagnosed. The children’s hospital became our second home.
“At first, they were focused on how to get Jamie home. Then, the conversations changed. “We had run out of options. Because we felt so safe and cared for by NHS Lothian, 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. 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.”
Pippa Johnston, Director at ECHC, said: “Each year, our wonderful colleagues in NHS Lothian support around 50 families whose child dies at the 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. While most families celebrate the ‘firsts’ – the first steps, the first words, the first tooth, donations to our appeal mean we can help families to mark the ‘lasts’, with compassion, love and respect.
“Our supporters are crucial in providing funds to bring some comfort to these families, helping them to cope with life without their child. We would like to thank anyone who is kind enough to donate when times are financially tough for us all.”
To support the appeal, please click here.
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