FASD test for Edmonton child still under review: health official

An Alberta hospital official says a final decision has not been made on whether an 11-year-old Edmonton girl will get a test for fetal alcohol spectrum disorder, something the girl's aunt has been fighting for.

The official said Friday documentation has not yet been received which may confirm the mother drank during pregnancy. Under health system rules, a person cannot be assessed for FASD without confirmation of pre-natal drinking.

"We have not received any of the reports back," said Dr. Gail Andrew, medical director for the Glenrose Rehabilitation Hospital's FASD clinical services. "We are going to do the best to get all these records. It does take some weeks to get the information."

Andrew's comments came after an Edmonton woman went public with her fight to get her niece tested for FASD, something she said has been going on since late last year.

Rita, who isn't been identified for privacy reasons, said administrators at Glenrose told her that without a declaration from the girl's mother, an FASD test is not possible. 

She said Alberta Health Services later said it would consider other evidence, such as birth records or credible witness confirmation.

But Rita said records don't confirm the girl's mother drank because child services intervened after her niece was born.  And she's been told confirmation from the girl's father, who is Rita's brother, doesn't qualify. 

Assessment could still be done

But Andrew said even without a confirmation of alcohol exposure a comparable assessment could still be done.

"If there is no confirmation of alcohol exposure this child will not be denied a functional assessment," said Andrew. "We devise a support and treatment plan based on needs, not on a diagnosis."

Rita said she fears someone will get hurt if her niece doesn't get the support she needs.

"She hurts people as well as animals," said the aunt.

She recalled the day her niece took their puppy outside in winter and poured cold water on her for an hour and a half.

"She thought she was playing with the puppy," said Rita, who has cared for her niece for the past six years and has full custody.

"(She) thought that this was OK. Because she doesn't know action and consequence."

Rita said there has been no way to get confirmation of pre-natal drinking directly from the girl's mom, because the mother lives on East Hastings Street in Vancouver.

"She is a crystal meth addict and she's pretty much nowhere to be found," she explained.

The woman said her niece is a "sweet girl" who loves to help out around the house, bake cupcakes, and lick the spoon.

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"I have to say, 'Come on, it's time to get dressed'," said Rita, who has three girls of her own. "I have to pick her clothes out for her. I have to tell her to brush her hair and brush her teeth every day. I have to still wash her hair at age 11."

The aunt has been convinced for years that such behaviour proves her niece needed help. "And we needed help, to help her grow into an adult and succeed in life."

Recently, after academic and psychological testing pointed to FASD, her niece was referred to the Glenrose for testing, the aunt said.

She believed a positive diagnosis would finally help them access supports, such as home care and respite care, something the family can't afford at $34 an hour.

But she said the hospital later told her the test could not be done without the mother's declaration of pre-natal drinking to protect her privacy rights, the aunt explained.

'I was devastated, in shock, in tears'

"I was devastated, in shock, in tears," she said, adding she felt alone and unsupported. What's worse, she said, no one referred her to other sources for help.

Caring for her niece has taken such a toll, she has even considered giving her up.  

 "She was neglected as a baby. But now, even as an 11-year-old child and growing up into an adult, she's going to continue being neglected, not only by the mother but by the health system. Because they refuse to do the testing for her and give her a proper diagnosis."

But Andrew said the requirements need to be viewed through an ethical lens. Rather than stigmatizing the birth mother, "we need to be fair to her," she said.

"It is a diagnosis of two," said Andrew. "I want to be as supportive of the birth mothers as I am of the children, youth and adults that are affected and living with FASD."

Petition launched to change rules

Rita has launched a petition on change.org demanding changes to the rules.

How dare you deny anyone the opportunity to improve our lives. This sickens me.- Edmontonian with FASD

More than 150 people have signed in support, revealing it's an issue right across the country.

• "I have one child diagnosed with FASD because the biological mother admitted to using alcohol," wrote a woman from Harrowsmith, Ont. "I have another child, who I have been told should be diagnosed with FASD, but can't because we can't get confirmation from the mother. He needs help and I'm running out of energy."

• "As a pediatrician I am constantly frustrated by this," wrote a doctor from Rossland, B.C.

• "I am FAS and let me tell you having been diagnosed has helped big time," reads another comment from a woman in Edmonton. "This is our lives you are playing with. How dare you deny anyone the opportunity to improve our lives. This sickens me.

Rita said if her niece doesn't get the proper support the cycle will continue.

 "She could grow up to become a drug addict or an alcoholic as well, because she can't function as an adult," she said. "She could turn into a criminal. She won't be able to work. Because she won't be able to have the strategies and training to succeed in life."

But Andrew said even without an FASD diagnosis, the child and her family will still have access to a full range of supports that are "almost identical" for an FASD patient, including respite, home services and education "because we know raising a child who has any type of disability is extremely challenging for families."

andrea.huncar@cbc.ca           @andreahuncar