Brave Edinburgh parents have recalled the moment they lost their nine-month-old baby following complications after birth.
Fiona and Martin Elliot sadly lost their son Jamie just nine months after he was born in December 2018 due to a number of health issues including fluid where his cerebellum should have been, hearing and sight loss and muscle tone issues.
Fiona and Martin were given the devastating news that Jamie may never walk or talk, and that he would probably not live to adulthood.
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After exhausting all options, Jamie sadly died in his parents arm at the Edinburgh Sick Kids in August 2019. Thankful that they got to meet Jamie and create as many memories as possible, Fiona and Martin are now supporting a new charity appeal to help families in similar situations.
Fiona, from Colinton, said: “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.
“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.”
Fiona and Martin are supporting Edinburgh Children’s Hospital Charity’s (ECHC) new Never Forget appeal, which aims to support families through bereavement and help them to cope with the loss of a child.
Fiona continued: “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.”
ECHC funds memory making activities which are delivered by the hospital’s Palliative Care team, giving families facing bereavement time to enjoy shared activities together and create precious keepsakes like charms, hand and foot casts and personalised quilts that they can treasure forever.
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 donate now to ECHC’s Never Forget appeal, visit www.echcharity.org/donate
