'Cherish every moment you have': Heartbroken parents share final moments with dying baby boy
A wedding photographer’s job is usually to capture the happiest moments in people’s lives.
That is what Sydney photographer James Day did when he was hired to document Charlie and Nancy McLean’s wedding.
But just two months after that happy day, he received a phone call that 'changed his life'.
Charlie and Nancy’s newborn son Edison was dying. He was born with the rare metabolic condition non-ketotic hyperglycinaemia and was not expected to live beyond a few days.
They asked James to come to the Royal Women’s and Children’s Hospital as quickly as he could to document their precious little time left with their baby boy.
James said he felt completely out of his depth, but with the help of a group called Heartfelt and Sydney wedding filmmaker Max Drygin, he came up with a way to record Edison’s last moments with his family.
Writing on his blog, James revealed the lessons he learned on the shoot, which was two days before Good Friday.
“I got up there as quickly as I could and documented some of the family coming to visit. I started simply taking still images, but quickly realised that I’d need to quickly work out how to film (video) the moments that were unfolding in front of me,” he wrote.
“The words that people were saying were just too powerful not to be recorded in some way.”
While there were many moments of grief and sadness, James said that wasn't all he saw in the hospital room.
There was also realisation that, for those few short days of Edison’s life, Edison was there with his family and he was loved.
“It is hard to find the positives in losing your child, but Edison has taught us a beautiful lesson that we need to share,” Nancy and Charlie wrote in a message posted to James’ blog.
“Cherish every moment you have with your loved ones. Love them like this is the last moment you will ever have with them. Never wait.”
Edison’s ventilator was removed shortly after the photos and videos were taken, but he survived for two days longer – long enough to go home with his mum and dad and for a picnic and a trip to the beach.
“He resumed breathing for himself and gave us two more beautiful days where we were blessed enough to take him for a picnic at the beach and even bring him back home again for 24hrs of cuddle time in our own bed,” his parents wrote.
“Our angel left our world at 10:25pm on Day 7; three hours short of being a week old.
“We spent those days laughing as much as possible.
“We made a promise to each other and to Edison to celebrate his life, not to waste any second we had with our baby boy while we still had him with us.
“Each time one of us started to become overcome with grief we reminded ourselves that little Eddy was still with us and to cherish the time we had with him.”
Since James posted the photos to his blog and Facebook, Edison’s story has been spreading rapidly through social media.
The images and video have been shared more than 100,000 times.
Nancy, Charlie and James have asked those who read his story to consider donating to the Women's Hospital Midwives Group Practice and NICU. Click here for more details.
