Katanning’s Rachel Dark is campaigning for changes to a newborn health screening after losing her baby daughter Rosie to a neurological disease last month.
- A Great Southern WA mother wants to see changes made to a WA infant screening test to include Spinal Muscular Atrophy
- New South Wales and the ACT are trialling a screening program to evaluate its effectiveness and safety
- CWA plans to raise the issue at the state conference
At seven weeks old, baby Rosie was diagnosed with Spinal Muscular Atrophy, a disease that occurred in one in 10,000 babies.
Specifically, she had SMA Type One, a significantly more severe and rare form of the disease.
Early detection is essential for treating SMA, if treatment can be administered before the baby showed symptoms, quality of life is greatly increased.
Sadly for the Dark family, baby Rosie was not diagnosed until she had already lost around 90 per cent of her muscle function.
Ms Dark was told that should Rosie go ahead with treatment, she would require a feeding tube, breathing support, and be confined to an electric wheelchair that she may or may not have the ability to control.
Rosie’s parents made the difficult decision to forego treatment and took her home for palliative care.
At just five-and-half months, Rosie passed away.
“It’s affected our whole family and that’s never going to go away.”
In the wake of this tragedy, Ms Dark has begun an awareness campaign in hopes of preventing similar situations for future parents.
She would like to see the Department of Health add SMA to the list of diseases screened for in the Newborn Bloodspot Screening test in WA.
New South Wales and the Australian Capital Territory are currently in the trial stages of including in screening, and Ms Dark is urging the Department of Health to consider trials in Western Australia.
“Had Rosie been born in New South Wales we would have found out that she had SMA around one to two weeks after she was born, and we would have been able to treat her within the first couple weeks of her life,” Ms Dark said.
“The children who are receiving treatment before they’re symptomatic are meeting most of the normal milestones that any other child would.”
Ms Dark’s campaign has gained significant traction in the past week, gaining the attention of former Country Women’s Association of WA president Heather Allen, who is hoping to help raise awareness through the organisation.
“I thought well, we’ve got the state conference for the CWA coming up real soon and we’re very family orientated, and I thought maybe there’s something I can do,” she said.
The Department of Health has said the situation was currently being assessed in WA.
They said a thorough assessment needed to occur to ensure that any screening test was appropriate and effective and that the potential harms, as well as any benefits of each screening test, were fully evaluated.