THE first time Lianna Middleton and her partner James Mason were able to cuddle their baby boy, Ezekiel, he was already 12 weeks old.
On that day, after a three month battle against a rare condition known as Congenital Diaphragmatic Hernia (CDH), Ezekiel died.
Born on January 12, Ezekiel had a defect in his diaphragm that allowed his stomach, spleen, liver and bowel to push up into his chest.
This forced his heart to the side, not allowing his lungs to grow.
Doctors at the Royal Children’s Hospital told Ms Middleton and Mr Mason that Ezekiel’s condition was one of the worst they had seen.
Ultimately, this little man didn’t stand a chance.
Speaking to The Courier yesterday alongside Lianna’s six-year-old daughter Sophia, the heartbroken couple said it was now their mission in life to raise awareness about the little-known condition, which affects about one in 2500 babies.
“Here is a condition which has the same statistics as cystic fibrosis, spina bifida... and no one knows what it is,” Mr Mason said.
“We just want to do something, anything, to get people’s attention and raise awareness.”
It was CDH awareness day on Saturday.
Mr Mason is familiar with CDH, as two members of his family were born with it, and survived.
However, with little research on the condition, doctors couldn’t tell the couple if Ezekiel’s condition was genetic.
“We never thought it was that severe,” Ms Middleton said.
“But later we were told they had to operate and that he stood no chance.
“We never got to hold him until the day he passed away ... we held him in our arms.”
The couple have shared their plight with more than 3500 people on Facebook, most of whom were complete strangers.
“It has been amazing to see the amount of support and encouragement we have received online,” Ms Middleton said. “That can only help in raising awareness too.”
Anyone wanting to find out more about CDH can visit www.cherubs-cdh.org
Ezekiel’s Facebook page can be found at https://www.facebook.com/EzekielsCDHJourney