Heartbreaking photos capture Sydney newlywed’s final moments with infant son

A Sydney couple have shared their final moments with their dying infant son in a bid to raise money for local midwives and neonatal intensive care services.

Newlyweds Nancy and Charlie McLean were devastated after learning newborn son Edison was diagnosed with an extremely rare metabolic condition, non-ketotic hyperglycinaemia, on March 23.

The condition, which prevents the body from breaking down and processing amino acids – the building blocks of proteins – had left Edison incapacitated and reliant on a ventilator to breathe.

Five days after his birth, the McLeans made the gut-wrenching decision to turn the ventilator off.

While Edison resumed breathing on his own, his parents – conscious that he would not survive for much longer – decided to capture their last hours with their son on camera.

The photos, taken by photographer James Day, who also recorded their wedding on January 24, offer an intimate and harrowing glimpse of the couple spending time with Edison before his death.

“It is hard to find the positives in losing your child, but Edison has taught us a beautiful lesson that we need to share,” the couple wrote on a crowdfunding page launched in their son’s honour.

“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.

“We only had seven days with our baby boy, but we take immense comfort out of the truth that in those seven days he knew only love.”

The campaign aims to raise $20,000 for the Royal Women's Hospital Midwives Group Practice and the Neonatal Intensive Care Unit, “in honour of our beautiful little boy”.

They have already managed to raise more than $6700.