WHEN Kelly and Gary Hiles were preparing to celebrate the birth of their first child earlier this year, there was nothing to warn them of the heartbreak to come.
Marcus was born five weeks premature and weighing only two kilograms on April 26 and, while doctors didn't immediately diagnose him, they knew something wasn't quite right.
That is the nature of Neonatal Hemochromatosis (NH), the little-known condition that took his young life.
Parents remain oblivious to the harm being done to their baby until it is too late.
"The pediatrician said he was floppier than normal - lacking in muscle tone," Mrs Hiles said.
"None of us thought anything of it at the time. To us, he looked like a healthy boy."
The prognosis had changed the next morning.
Worried doctors conducted tests and realised that Marcus' blood was not clotting - a sign of liver failure.
By the third day they had worked out that the new-born was suffering the effects of NH.
Marcus died later that day.
"I felt like my heart had been ripped out," Mrs Hiles said. "It was the worst day of my life."
In spite of their devastation, the couple quickly set upon the task of learning more about the condition that killed their first child.
They discovered an American specialist, Dr Peter Whitington, who has dedicated his life to helping mothers around the world to cope with NH.
Disturbingly, they also learned that their chances of conceiving another child with the condition were now very high - about 80% - and that regular medical treatment would be required during the next pregnancy.
NH is a condition that occurs while the baby is in the womb.
Essentially, the mother's own immune system fights against the child and toxic iron levels accumulate in the child's liver and other organs.
"NH is usually deadly to the unborn baby but if born alive, in most cases it kills the baby in the first weeks or months of its life," Mrs Hiles said.
The treatment that Mrs Hiles will undergo if she becomes pregnant again will involve the transfer of intravenous immunoglobulin into her body from 16 weeks onward, to clean up any of the antibodies that would affect the baby's liver.
In the meantime, the Hiles family remains focused on doing whatever they can to help other families affected by NH.
Researchers at the Lurie Children's Hospital, Chicago, are trying to find a way to screen women to detect first-time NH cases while the baby is still healthy enough to treat.
"I think both of us are the kind of people that will try to look at life positively, despite what has happened," Mr Hiles said.
Mr Hiles, a former Ipswich police officer who now works in the Oxley district, and Mrs Hiles, who works in the police communications centre at Yamanto, have enjoyed the moral support of the local police community.
The couple is organising a charity golf day at the Sandy Gallop Golf Club on November 29, where they hope to raise at least $10,000 for the research.
Anyone who wishes to nominate a team for the day can contact Mrs Hiles on 0416337494 or email email@example.com.
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