The Sunday Mail (Queensland)
Parents left grieving for future they have now been robbed of
Tragic Zac’s disease was so rare only three other infants had it
LITTLE Zac Coaton only lived for 11 short weeks, but he gave his parents the greatest gift – unconditional love.
The little boy, who lived long enough to reveal his “cheeky” personality, was born with a rare genetic disorder. He wasn’t expected to live long after birth.
But little Zac fought and was with his parents for 11 precious weeks.
He passed “peacefully with family around him” yesterday.
“He gave everything to give us more time and for that we’re grateful,” mum April Coaton, 31, said.
She said there was no family history of skeletal defects, but Zac was born with a body of broken bones.
Osteogenesis imperfecta, or brittle bones disease, prevents the body from building strong bones.
It is estimated to afflict about one in 20,000 babies born but Zac’s severe mutation was so rare that only three other babies in the world have shared the
Every bone in his che st had a fracture and e very long b one in his b ody had a fracture... Zac’s dad Kiel Coaton
same diagnosis. All of them died in infancy.
“He had skeletal X-rays the day after he was born … every bone in his chest had a fracture and every long bone in his body had a fracture, so his leg bones all had breaks, and one of his clavicles,” dad Kiel Coaton, 30, said.
While most types of OI are inherited, almost all infants with the severe type don’t have a family history of the condition.
Ms Coaton said doctors described Zac’s genetic mutation as “a spelling error” that occurred at conception.
The young couple, who live on the Gold Coast, said the first alarm bell rang at their 20-week scan, when a sonographer noticed bone abnormalities.
But it wasn’t until 34 weeks that they knew it was an aggressive form of the disease.
The prognosis was earthshattering for newlyweds who were “so happy” to discover they were expecting a baby.
“We were thinking that he might not survive the birth because they were telling us that it’s very severe,” Ms Coaton said. “So at birth when we found out that he was crying, we were so happy, having hope.”
Doctors deemed Zac’s condition fatal and he spent his short life in the palliative care ward.
OI Society of Australia Queensland branch representative Brandi Johnson said there is a “huge spectrum” of how the disorder impacts various people.
“It can range to very mild, that people have such a little amount of OI that they don’t even know that they have it, to extreme cases where they either die in utero or soon after,” she said.
“For some like Zac, unfortunately he wouldn’t have be able to leave hospital and that is so heartbreaking.”
While they are grieving for the future they have been robbed of, Mr and Mrs Coaton say they are grateful for the time they had with their son and the “amazing” support of the nurses and doctors from both hospitals.
“He did extremely well and gave us more time than we expected,” they said.
They have agreed to allow researchers to take a biopsy of Zac’s lung to help other families in the future.