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An ABC 7:30 Report
Transcript
14/04/1999
Mother fights to get daughter back after disputing doctorsMAXINE MCKEW: In Queensland, a bitter dispute over medical treatment has resulted in a mother losing custody of her teenage daughter.
Tahnee Johnson claims her daughter is suffering chronic fatigue syndrome and needs time and rest to recover.
But some doctors are arguing the girl doesn't have the condition and needs physical therapy instead.
Now, her mother is appealing a Children's Court decision placing her in the custody of the Department of Family Services so treatment can continue.
Genevieve Hussey reports.
TAHNEE JOHNSON: I have seen her sobbing due to the pain that she's been in.
I have observed her holding out her arms and begging me, begging me that she cannot last much longer.
GENEVIEVE HUSSEY: Tahnee Johnson only sees her daughter on the occasional weekend visit .
TAHNEE JOHNSON: I have no control. They've stripped me of everything.
I mean, I will always fight for my daughter...
GENEVIEVE HUSSEY: Tahnee Johnson's plight began when she took her ill and lethargic daughter to hospital.
When doctors began physiotherapy Tahnee Johnson says her daughter's condition worsened.
TAHNEE JOHNSON: All these other symptoms within this week just set in from the light sensitivity, to noise sensitivity, skin sensitivity, incredible weakness.
GENEVIEVE HUSSEY: Believing the treatment was doing more harm than good, she removed her daughter from the hospital, convinced she was suffering chronic fatigue syndrome — a debilitating illness which leaves sufferers weak and fatigued.
DR RICHARD BURNET: They have a collection of symptoms associated with low blood pressure, low blood glucoses, bowel disturbances.
TAHNEE JOHNSON: I believe that she's capable of doing very, very little.
She needs lots of rest and she needs to be in an environment where she's believed and she needs to be under the guidance of a doctor that understands chronic fatigue syndrome.
GENEVIEVE HUSSEY: However, doctors rejected her view, and at this point, the Department of Family Services became involved.
PETER EVANS: A psychiatrist set a SCAN team, which is a Suspected Child Abuse and Neglect team, on the mother saying she was preventing proper treatment of her child, which was the forced physical rehabilitation.
GENEVIEVE HUSSEY: The Department says when there's potential harm to a child the opinions of medical specialists are canvassed and the court makes a decision based on all of the evidence.
After a four-day hearing the Children's Court decided the girl should remain in the custody of the Families Department and receive continuing treatment.
PETER EVANS: We're terribly concerned about the physical safety of the child, the inappropriate treatment and the probable misdiagnosis.
GENEVIEVE HUSSEY: The Chronic Fatigue Syndrome Society believes forced physical rehabilitation is the wrong treatment.
Chronic fatigue syndrome specialist Richard Burnet says sufferers must be allowed to exercise at their own pace.
DR RICHARD BURNET: The mainstay of treatment is to only allow people to exercise to the limit of their tolerance.
If they go beyond that, they produce excess amounts of lactate, they damage the cells themselves.
GENEVIEVE HUSSEY: Dr Burnet has diagnosed the girl with chronic fatigue syndrome but won't talk about the specifics of the case.
He says he's diagnosed over 300 cases of CFS based on an internationally accepted set of criteria.
DR RICHARD BURNET: We have to run a fairly extensive series of investigations to exclude all these other tests, but at the end of the day, the person has the symptoms of chronic fatigue, the primary diagnosis is based on the history and the lack of finding any other condition that can cause the fatigue.
GENEVIEVE HUSSEY: Chronic fatigue syndrome has had a controversial history.
In the past, sceptics have claimed it's "all in the mind". Others have warned it's easily misdiagnosed.
Is it possible that you're wrong, that you're being fooled by your daughter?
TAHNEE JOHNSON: No, no.
GENEVIEVE HUSSEY: What makes you so sure?
TAHNEE JOHNSON: Because as a mother when, like I said, when you witness something like I witnessed with my daughter, knowing what she was like before.
GENEVIEVE HUSSEY: The Chronic Fatigue Syndrome Society says Tahnee Johnson's isn't an isolated case.
It points out that similar cases are being fought in the US and the UK and a number of Australian parents claim they've faced the threat of losing their child.
PETER EVANS: In most of the cases what has happened is the child's been marched around with all the tenderness of building a Burma railway under the Japanese occupation, the child gets sicker and more distressed and often the mother tries to intervene saying, "This can't be right, my child's getting sicker," and the very unsavoury feature of this, is often the psychiatrist will turn on the mother and say, "Well, you're abnormally close to your daughter, the relationship's abnormal and improper, you've got to stay away from the hospital, you've got to stop getting involved in the treatment".
GENEVIEVE HUSSEY: Karen says she's experienced a similar dilemma.
KAREN: My daughter Simone has suffered one of the most severe cases of chronic fatigue syndrome ever seen in Australia.
For almost two years of her illness she was paralysed from the neck down.
GENEVIEVE HUSSEY: Karen says when she disputed the medical treatment being given to her daughter, she was told she could lose custody of her.
KAREN: You think you live in a democracy with freedom of choice but the bottom line is if you question their authority, the medical profession aided by Social Services has the power to have your child taken away from you.
GENEVIEVE HUSSEY: The 7:30 Report approached the Queensland Family Services Department and doctors involved in Tahnee Johnson's daughter's case, but they declined to comment.
We did receive this statement, saying in part: "The Department of Families is required by law to implement the decision of the cour t, which is subject to the normal appeal process.
The issue of what constitutes appropriate medical treatment is not a matter for the Department, but rather for the medical profession."
Tahnee Johnson says she hasn't given up her fight and is to appealing the court decision.
TAHNEE JOHNSON: When you see that it's harming your child and causing her distress any mother would confront them and challenge them about their treatment.
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