Australia is one of the only developed nations in the world that does not currently screen for the chronic health condition, Congenital Adrenal Hyperplasia (CAH).
Parts of the USA and New Zealand have been screening for CAH for more than 25 years. The Phillipines has recently introduced screening. Why does Australia not screen?
1 in 15,000 children are born with this condition each year in Australia.
Experts suggest the lack of screening in Australia costs the life of one child every few years, with several children almost losing their lives every year.
Here is just one heartbreaking story of so many that wouldn't have to happen if we had Newborn Screening for CAH in Australia.
" As a mother I knew something was wrong with Harry from birth. I saw two GPs, 5 different community health nurses and a lactation consultant who was also a midwife. I was trying all different methods of feeding him without success.
The final straw came when after the 4th night/day of constant crying, Harrison started vomiting bright yellow in the early hours of the morning. I took him to emergency and he was taken straight in and diagnosed with "failure to thrive". The blood test results revealed he had a critically low level of sodium.
We were then rushed to the NICU at the children’s hospital where we ended up staying for over a week to ensure Harry was stabilised and was then finally diagnosed with CAH.
I still can’t believe that if Harry was tested for CAH in routine screening (at minimal cost) we wouldn’t have had to go through everything that we have.
He could have died.”
- Jo, mother of Harry, now aged 1
The photo on this page is Harry the day he was admitted. One more day and he would have been dead.
It's time to address this important child health issue. The CAH Support Group of Australia has been writing to politicians for many years about this issue without success. There's too much red tape. It is time for someone to be accountable.
The Australian Health Ministers Advisory Council needs to act now before more babies die from what can be prevented by newborn screening.
Find us on twitter @AUSCAHscreening