'I felt like I wasn't alone anymore': Edmonton child diagnosed with FASD after battle for testing

An Edmonton woman says her family has the help it needs after her niece was finally tested and diagnosed with fetal alcohol spectrum disorder last month.

"I literally just started crying," said Rita, who is not being identified to protect the privacy of her niece. She had been trying to get her niece tested for nearly a year.

"I felt like I wasn't alone anymore."

• FASD test for Edmonton child still under review: health official

• Support services for FASD inconsistent across Canada, prof says

Last April, Rita shared her story with CBC News. She said caring for her niece was a struggle but if testing confirmed FASD, the family would qualify for much-needed provincial supports.

The problem, however, was that provincial rules require a declaration of prenatal drinking. But the requirement was impossible to meet, Rita said, because her niece's mother is a drug addict and difficult to track down. They had not been able to confirm prenatal drinking through government records either.

At the time, Alberta Health Services told CBC News the case was still under review. Seven months later, Rita got her wish and testing confirmed what she already believed — that her niece has FASD, among other neurological disorders.

"I felt like I was validated," said Rita. "It was really a lot of relief."

Rita said she was told the testing could go ahead because of evidence the girl's mother used drugs and would not remember if she had been drinking.

There's an entire team that is going to help me in raising this little girl because sometimes it takes a community to raise a child- Rita, whose niece was diagnosed with FASD

Since the diagnosis, Rita said her family has received a wide range of supports including respite, mental health programs, school involvement and regular contact with a social worker.

"Everybody is more involved altogether, where before I was just left on my own," said Rita, "I think that the diagnosis helped get the community involved."

She praised healthcare workers for their compassion and support during the testing and follow-up.

"There's an entire team that is going to help me in raising this little girl," she said. "Because sometimes it takes a community to raise a child and this is one of the scenarios."

Rita said criteria needs to change and she hopes other children in the same situation will get the diagnosis they need, even if they don't "fit in the perfect box" in order to successfully grow into adulthood.

"Just so that parents aren't burnt out. So that we receive the help that we need. Because it's very challenging to raise a very complex child like her."

Alberta Health Services has been contacted for comment.

@andreahuncar             

andrea.huncar@cbc.ca