Parents have plenty of rights, but choosing their child's medical treatment doesn't always seem to be one of them - especially when doctors, social workers and the courts take a different view. Mark Whittaker looks into the disturbing issue of forced medicine.
© Getty Images
Sensitive issue … NSW has one of the highest rates of child-removal in the Western world
The doctor examined the smattering of sores on the 14- month-old girl. "Some of these chicken pox are infected," he said. "We're going to have to give her an intravenous antibiotic."
"That sounds a bit extreme," the mother, Melissa*, said.
The baby's father's family had a history of bad reactions to antibiotics. "Can we try something topical first?"
"No. It needs to be intravenous. She's really bad."
What’s up, docs? … Professor Kerryn Phelps believes there is a lack of understanding of integrative treatment approaches in the medical profession
Melissa didn't think her baby looked too bad at all. They'd only come into hospital because they'd wanted to give her Panadol to bring down her fever, but her husband's family had a history of bad reactions to that drug, too, so before the baby had her first ever dose of it, they wanted to be close to help. The father, David*, came in from parking the car and together they asked for a second opinion. The second doctor agreed, word for word, with the first.
"Well, you're not doing that," David said.
"You don't have a choice," the first doctor said. "If you don't do what we say, we'll be calling DCS [Queensland's Department of Child Safety] and you'll have to do what we say."
Melissa and David didn't quite believe what they were hearing. The doctors left them alone for a moment. David knew what he had to do. His parents had been foster carers for years and he and Melissa had done the training to become carers themselves. They knew how the system worked. They bundled up the baby and their other two kids, walked briskly to the exit, got in the car, removed the SIM cards from their phones and drove hard for the border. "From my experience, once DoCS [he's referring to the Department of Family and Community Services in NSW] has got control of the child, you've got to work to get your child back and that's not good enough," says David. "There was no way I was going to let that happen."
© Courtesy of the Westley family
Healthier days … Sarah Westley before being diagnosed with ovarian cancer
Melissa and David live on the far south coast of NSW and had been visiting David's brother in Brisbane. After an adrenalin-fuelled drive - sinking into the upholstery at the sight of every police car - Melissa and David made it into NSW. At 3.30am, five hours after they fled the hospital, police turned up at David's brother's house looking for them, saying that if they didn't find the baby within 24 hours, she would die of a neurological problem. They checked out the kids in the house and threatened the brother with arrest if he was obstructing justice.
That morning, Melissa and David went to a NSW north coast doctor, but didn't tell him the story. "Do you think she needs intravenous antibiotics?" David asked.
The doctor looked at him a little condescendingly. "That's a bit extreme," he said. "You just need some antibiotic cream and a Band-Aid."
The doctor wrote a prescription and the child was better in a few days. The police and social workers eventually dropped off the case. David and Melissa were lucky. Reason had prevailed.
Doctors, in combination with social workers and the courts, have a lot of power that can be used to override the rights of the parents to choose their child's medical treatment. Last year, a Queensland court forced a mother with hepatitis B to vaccinate her 40-hour-old daughter against the disease because there was a 20 per cent chance the child would catch it. It's hard to argue against that. But those same powers can be used to nullify the rights of families where the lines aren't so clearly drawn and where one doctor's opinion can differ sharply from that of others. On those occasions, the right to informed consent appears to be no right at all - merely a whim of doctors and social workers with extreme powers and a sometimes Orwellian propensity to use them.
Megan* wishes she'd got in the car
© Courtesy of the Westley family
Little girl lost … Sarah’s health rapidly deteriorated after her initial chemotherapy treatments
and driven the day they first came for her kids. Ever since her two children were born in 2005 and 2007, they'd had digestive problems. Jai* had chronic constipation, Nina* chronic diarrhoea. For years, no doctor could explain it. But a local paediatrician in south-west NSW sent her to one of his old university friends in Sydney who specialises in these things, and he immediately ordered tests that found Jai and Nina were genetically predisposed to a disorder that prevented them absorbing the nutrients in food.
It was a huge relief to have answers at last. The doctor ordered digestive enzymes and various vitamins and minerals tailored to each of their deficiencies. Immediately, their health and behaviour improved. Jai - who'd also been diagnosed with Asperger's syndrome, a mild form of autism - became more alert and happy.
All was well for a year. Megan had made their childcare centre aware that her kids were sensitive to chemicals. She used vinegar and bi-carb for cleaning at home, so when she found out that her children had been cleaning their own mattresses at childcare with disinfectant chemicals, she complained to the centre. "The records show that the very next day I got reported to Community Services," she says. "I think the childcare centre got sick of giving the tablets because it was time-consuming for them. There were about four tablets. One was a digestive enzyme before meals and the other three were for after meals."
The social workers came on a Friday afternoon. They apparently always come then, because it's harder to get legal representation, but Megan didn't yet know things like that; she didn't yet live in the world of courts and affidavits and supervised access. The mere word "DoCS" had that pejorative taint that she didn't quite want to admit feeling. Megan was a registered nurse who had volunteered for the Salvos and Lifeline. Her husband, Pete, was a public servant in a position of responsibility and was also a long-time volunteer in the local community.
"We've got concerns about the medications the children are on," the social worker said.
"You'd better come in," Megan replied, certain that if they just sat down and talked, they'd see their mistake, would see the children were very much loved and nurtured. The social workers produced a list of the substances of concern.
"No, they're not medications," Megan said. "They're vitamins and they're all ordered by their doctor." The doctor's name was on the bottles. She got on the phone to the Sydney GP who told her she had nothing to worry about. No one in the room realised this family was about to become a border skirmish in a larger battle over the direction of modern medicine, and that the children would soon become prisoners of this war.
The social workers had spoken to the paediatrician who had sent Megan and the kids up to Sydney looking for answers. He now said those answers - all these enzymes, probiotics and vitamins - were "pseudoscience" whose safety was untested. The social workers had also spoken to Jai and Nina's Sydney paediatrician and recorded it in an affidavit: "He stated that he had no concerns in relation to the family. It was not unusual for a child to be taking this many vitamins. They were safe and would not hurt the children."
So there was Megan, sitting with the social workers when they came out with their second allegation: that the children had seen too many doctors. They said she'd taken them to 12 in two years. That didn't sound right. Megan could think of only four. She'd later realise they'd counted the names of all the pathologists who'd analysed the blood tests.
The third allegation was the number of different diagnoses given to the children. For example, Nina had gastroesophageal reflux, bloating and diarrhoea, among others. "But they're not diagnoses, they're symptoms," said Megan.
Even if she had seen lots of doctors and her kids really did have lots of diagnoses, she wondered, "What was wrong with that?" Only later did she realise that the social workers were trying to fit her into the largely discredited profile of Münchausen syndrome by proxy (MSBP) - in which sufferers are said to invent or cause problems in people under their care, often children, in order to gain attention.
Her husband, Pete*, rushed home from work and tried to help explain the medical regimen: the well-documented links between the gut and the brain, how the kids couldn't absorb certain nutrients but, since they'd been on this diet, everything was working so much better. But therein lay the catch. Jai was so normal now, the social workers didn't believe he'd ever been on the autism spectrum. In their mind, all these medications were just one great gratification for an attention-seeking mother.
The parents allege that one of the social workers turned and said: "I'm going to level with you: I think you're poisoning the children." So while they never came out and accused Megan of MSBP - because it's not a recognised disorder and has repeatedly been discredited in the courts - it was their unspoken amateur diagnosis to explain all these pills. The social workers, one of whom knew Pete from his volunteer work, had obtained an Assumption of Care Order from a magistrate, meaning they could take the children: they had 72 hours to prove the children were "at serious risk of harm".
Despite being found to be perfectly fit and well after a four-day hiatus in hospital, the children were taken into foster care. "People have said to me, 'There's no way I'd let them take my kids,' but you've got no choice," says Megan. "You can't do anything to save your children and that's the thing I've struggled with the most ..." She pauses to cry. "We couldn't do anything
... It was just a horror story because we believe in attachment parenting and our children had never been away from home without us. How would they cope? They were three and five."
Megan and Pete had been told what to tell the kids, so they smiled through the agony: "You're going to go for a holiday and stay with a family. Have fun."
In the ensuing whirl of lawyers and evidence-gathering, Megan got onto a forum of other parents using the same "biomed" treatments. Biomedicine works on the belief that many allergies and behavioural disorders originate from chemical imbalances in the body and can be corrected through diet, improved gut flora, correcting nutrient deficiencies, and eliminating environmental toxins. While there are many clinical studies to back up its claims, there have been few of the more expensive randomised controlled trials (RCT) to support biomedicine, and since RCTs are held up as the gold standard of medical research, the more mainstream medical fraternity has been hostile towards it.
"Has anyone ever been targeted by DoCS for taking vitamins?" Megan typed.
A reply soon came back from a woman, Renee*, in Sydney. She had a son who was one of those really difficult kids. He had been allergic to almost everything, stank the house out with his permanent diarrhoea and had the sort of behavioural problems that defied diagnosis. Other parents threatened to call A Current Affair
if he wasn't expelled from childcare. Renee had been accused by a counsellor of causing all his problems by emotionally abusing him and so had endured a 16-month court battle to keep him - during which time she had to hide the fact she was seeing a biomed doctor. "I had taken him to a paediatrician who prescribed him all the usual ADHD [attention deficit hyperactivity disorder] medication, so they were really happy that he had been put on a combination of Ritalin, Lovan [a form of liquid Prozac], Catapres [often used to treat high blood pressure as well as ADHD], and something else. They all made him 10 times worse. But I had nothing else to try. It was only in the middle of the court case I got on to these other doctors who put him on probiotics and vitamins which began to make him better. I had to do it in secret because I knew they wouldn't like it."
Renee got straight on the phone to Megan. "For God's sake, you won't get your kids back unless you ring this woman, Helen Hayward-Brown."
Dr Hayward-Brown is a NSW medical anthropologist who did her doctoral thesis at Charles Sturt University on women accused of MSBP. Since then, she's gone on to help about 100 women falsely accused of it. She's seen an increasing number of educated, middle-class women - what one medical practitioner called the "PhD mothers" - tarred with the label. "That's because middle-class people with some education are often the ones who, with the internet, are able to get access to more information about what's going on overseas, and that's often regarded as suspicious," says Hayward-Brown. "There seems to be a general suspicion about any of these complementary or alternative medicines.
"A parent might go to a medical practitioner who uses different therapies to a more mainstream practitioner, and if the mainstream practitioner finds out, then problems can start to occur. A lot of these parents are targeted when there's medical debate around an illness. For example, 12 years ago parents of children with gastric problems, allergies or chronic fatigue syndrome were targeted on a large scale. These days, it's more children with ADHD and Asperger's, where there are debates around whether these illnesses exist and how they should be treated. In many instances, the parents become the pawns in the medical debate."
The other problem is when parents ask
too many questions. One such case occurred nine years ago when Mark and Dianne Westley, from near Gloucester, NSW, took their 11-year-old daughter Sarah to the local hospital in pain with a swollen belly. The doctor said she was pregnant and notified DoCS. The parents didn't believe it for a moment and Sarah was subsequently rediagnosed with cancer. But she had entered the DoCS system, so things were different. The family doctor told the social worker that the family belonged to a religious group that frowned upon modern medicine. They did not. They were non-denominational Christians and held no such views, but the profile stuck.
When Mark - a coalminer and farmer - asked the treating cancer specialist for the studies showing the effectiveness of the chemotherapy drugs that the doctor wanted to give Sarah for her rare and exceedingly virulent form of ovarian cancer, the doctor waved his hands over some documents, but wouldn't give him any. When Mark discovered the only study of chemo on Sarah's form of cancer showed all participants had died, he started looking for alternatives. He found a hospital in the US offering low-dose chemotherapy and complementary therapies, but before he got a chance to sell some cattle to take the family there, Sarah was wrenched from their guardianship.
Nobody told them or the judge that Sarah's condition was already terminal. They only learnt that later when they got the medical records.
The doctors claimed that if she were given chemo, she had an 87 per cent chance of living to old age. Everybody involved with the case was told about the family's weirdo religious beliefs. Nobody bothered to check if it was true.
Sarah was pumped full of the chemo drugs and went downhill fast. Mark had to sell his cows to pay for legal fees. Without any money left, he represented himself and succeeded in getting her back, so that she could at least die in a Melbourne hospital that seemed more friendly.
An "integrative" medical clinic on the NSW central coast, which had tried to help Sarah, was closed down by the Medical Board without explanation and one of its co-owners, Eve Hillary, wrote a gut-wrenching book,
Sarah's Last Wish, about the case. Hillary had watched Sarah's government-enforced decline. "I felt the way the profession was doing this, something was going seriously off the rails," she recalls. "This is not the way you do things."
The state had spent millions on lawyers and doctors to impose a non-evidence-based treatment that cost $300,000 for the chemicals alone, rather than allowing a family to spend its own money on an overseas treatment for which there was evidence of success.
NSW has one the highest rates of child-removal
in the Western world - 10.7 per 1000, compared to about four per 1000 in Victoria. Despite this, as Hillary points out, a child in NSW is twice as likely to die from abuse or neglect as one in Victoria. And still the media demands that more children be taken whenever a child known to the department dies. Few in the public sphere question whether they're taking too many children from their parents.
Hillary says she's heard from people who had their children taken just because they feed them only organic food. "Childcare centres misunderstand, and doctors who aren't educated in integrated medicine misunderstand it because they don't understand the nature of environmental illnesses or the nature of integrated treatments ... About 78 per cent of Australians use nutritional supplements, so it's not an outlandish thing, and there's a lot of science behind it that isn't acknowledged."
When I phone the biomed doctors who successfully treated Megan's children, the GP doesn't return my calls and the paediatrician declines to go on the record. He's had other parents accused of MSBP, but no others who have had their children taken away for pursuing alternative treatments. "All I could see was two very dedicated parents trying to look for answers to their children's problems," he says, asking not to be named. "Mainstream doctors failed to provide answers and so they sought them elsewhere, and they get rewarded by having their children removed from them ... That's an extraordinary thing."
So why is this doctor, a properly qualified paediatrician from a sandstone university, afraid to be named? "You just get shot down, basically. There's so much antagonism against it [biomedicine]. The main argument is that it's not evidence-based and therefore doesn't exist. And there's always the risk that the parent can be perceived as medicalising a situation for whatever reason and it gets thrown back onto them. They get blamed, yet the children have real conditions, real problems, which Megan can talk to you about."
A ring-around of biomed doctors found only one prepared to speak, but even that was on the condition of anonymity. He was familiar with Megan's case, and had seen one other like it. "I've got one patient, she's not a traditional autistic child, she's got a hereditary problem, but she also had a problem with her larynx. Every winter, with her low immune system, she would spend months in intensive care on a respirator. That happened last year in Brisbane. They were talking about giving her a permanent tracheostomy and the mother said, 'Please, if we can avoid that, is there someone else we can ask?' "
The mother said she'd be happy to fly to the UK, where she'd heard they treated this type of thing. "And the specialist said, 'If you try to leave the country, I'll take your child off you.' It was absolutely deplorable. That's the sort of heavy-handed attitude that's out there. She sneaked the child down to Sydney to Westmead [hospital] and saw an ENT [ear, nose and throat] specialist there who repositioned her whole epiglottis, and now she's fine."
This biomed doctor disagreed with my perception of biomedicine as being underground. "I'm proud of what I do. I don't care who knows what I do as far as the public goes. It's just with academia you've got to be careful, you don't want to get up people's noses. They come gunning for you ... the diehards would line us up and shoot us." Or shut them down.
I ask Professor Kerryn Phelps, the former president of the Australian Medical Association who now heads up the Australasian Integrative Medicine Association, "Why the fear?"
"One of the problems is that the peer review panels are not peers," she says. "They're not doctors who have studied or understand integrative treatment approaches ... A lot of these [integrative] doctors were targeted, and quite unfairly dealt with, because the doctors sitting in judgment of them were trained in these other ways of treatment, therefore [integrative medicine] seemed weird and nonconformist."
She says highly risky new treatments, such as novel chemotherapy drugs and surgical techniques, tend to be tolerated by doctors, whereas relatively benign treatments are frowned upon: "By anyone's estimation the risk of adverse events with high-tech medical interventions and pharmaceuticals is far greater than with vitamins and minerals and herbal therapies." She sends me a fascinating bubble diagram which spells out the minuscule risk of dying from food supplements or herbal remedies compared to "preventable medical injuries in hospitals" and "adverse pharmaceutical reactions".
Megan and Pete were allowed
an hour and a half of supervised access to their children twice a week. They tried to keep up the happy facade of a holiday. Jai kept apologising. He thought they'd sent him away because he'd done something wrong. "Why can't we come home?"
Megan and Pete couldn't tell their children why, and they couldn't tell them when. But after DoCS informed them that their son had been booked into a school out of town for the following year, they knew they were playing for keeps because it was still only July.
Helen Hayward-Brown had told them how it was going to play out. If they wanted their kids back, it was going to cost between $100,000 and $200,000 to bring in a Queensland-based lawyer, Darren Mahoney, and a senior barrister, Peter Davis. Local lawyers all sucked from the same government teat, all lunched together and rarely did a good job, she'd said.
Even with the barrister, a pile of glowing references and long letters from 10 doctors, including specialists from Australia and the US - people who'd treated tens of thousands of similar patients between them and published hundreds of peer-reviewed articles on the subject - they still failed to tip the balance against the social workers and the bush paediatrician who said it was all pseudoscience.
Within a week, both kids were suffering from bloating, says Megan. Jai's constipation returned, so his foster carers took him to hospital. The bush paediatrician who said vitamins were unsafe put him on a laxative, Movicol, which has never been subject to a long-term safety study in children. The behavioural problems returned. Nina threw her gumboots at Pete in a rage during one visit and told Megan, "I don't love you any more, Mum."
Megan and Pete offered to provide reputable supervisors so they could have more access. Jai asked if they could buy a mobile phone so he could talk to them more, but it was all knocked back by a department psychologist. "It's all part of their power of keeping you from your children to wear you down. All part of their ransom," says Megan.
Pete had been off work for six weeks. He and Megan had both been working full-time to gather the evidence to disprove the allegations. Megan would work all day on the case, then go on to the biomed forum where 1000 families using the same treatment were following her case with dread, fearing the same could happen to them. And she'd read the numerous anti-DoCS forums, which were full of sad stories about people who never got their kids back.
There is money in foster care. Families earn $410 a week, plus medical expenses, to mind other people's children. For that, they can feed them fairy bread. Renee from Sydney had told Megan that this was the only food they gave her son - with his multitude of gut issues - while he was in care. And once in care, there's a strong chance of them being put in a "chemical straitjacket". One in four foster children in NSW are medicated with psychotropic drugs to control their emotions and behaviour. That rises to 44 per cent if they're Aboriginal, and 50 per cent if they're in residential care - living in small groups under the supervision of social workers.
Megan says the appalling food her kids were fed was as bad as any drug. Another woman from the same town whose story is similar to Megan's, but far too complex to relate in detail here, had similar problems when her children with ADHD and autism were removed from her care.
"When DoCS came to my house there was no packaged food," explains the woman, "so they said to the court I wasn't feeding my children. In my house, all food had to be made by me, so all there was - and I have photographs - was shelves full of ingredients. I made everything from scratch and they were only allowed to drink water or milk. In care, they had Coco Pops for breakfast, Nutella sandwiches for school lunch, peanut butter, chocolate-coated muesli bars, cordial. My son was in care for three days and his face was so badly stained with cordial you couldn't wash it off.
"While the kids were with me under parental orders up to 12 months ago, it was part of the conditions that if there wasn't packaged food in the house - cereals and muesli bars and chips and biscuits - they'd remove the kids. So I had to feed my kids shit for 12 months or they'd take them off me. When DoCS came for their weekly visit, they'd check the cupboards. Now I have this massive problem. My kids are hooked on sugar."
After seven weeks of separation, Megan and Pete were desperate. Before the fifth court appearance, their barrister, Peter Davis, said it was likely DoCS would delay the case for another six months. The solicitor, Darren Mahoney, said that from his experience, DoCS would then argue that the children had been away from their parents so long it was no longer in their best interest to be reunited with them.
Megan and Pete caved. They were told if they signed a document agreeing that their kids were at risk, they'd get them back. They signed. It had cost them $110,000 in legal fees, a financial blow that will affect them for the rest of their lives.
There were emotional repercussions, too. Megan couldn't go to the clothes line without Nina fretting, and every time she heard the dogs barking, Nina feared it was the social workers coming back. Megan wouldn't do the grocery shopping for the first year for fear of running into the caseworkers in the small town where they lived, and she didn't like going out any more. Everybody in town knew they'd had their children taken away; invitations to kids' parties dried up.
The social workers were allowed unfettered access to the house for two years, plus access to the children alone. And Megan had to agree to feed them a diet "considered within normal limits", including "foods that contain yeast, gluten, sugar, diary [sic] products and eggs unless excluded on advice from a medical practitioner". The fact is, all those foods had been excluded by a medical practitioner with great success, and now they were being forced to eat them because the bush paediatrician didn't agree.
"I've studied nutrition," says Megan. "Here were these people with no nutrition training, and who are themselves outside a healthy weight range, sending out this advice on eating too much healthy food."
The Department of Family and Community Services said it did not comment on individual cases, but the decision to recommend that a child be removed from its parents "is never taken lightly. Taking a child into care is always a last resort".
The statement added that "caseworkers take into account a whole range of factors when assessing whether a child is in need of care and protection. Our overriding principal is whether a child will be at risk of significant harm if they remain in their current living circumstances." The paediatrician also declined to comment.
Megan and Pete's two-year supervision period ended on July 31, so they've been able to choose their own doctors again. And when I approach Megan to take part in this story, she readily agrees in order to set the record straight. She can speak about it now and she is angry. Pete declines to be interviewed: he just wants it all to go away, says Megan. She wants the file corrected and perhaps compensation. Her complaint is currently under review by the new NSW minister for Family and Community Services, Pru Goward, who was aware of the case while in Opposition.
Megan had at first asked that I not mention Jai's Asperger's in this story. He has largely recovered and has "lost the diagnosis", as they phrase it. When he comes home from school, he looks me in the eye and speaks like a smart and polite boy of seven. To me, it is a powerful vindication of the family's chosen path. "But if you put that in," she says, "they'd just say he never had it in the first place and throw it all back on me."
I say I'd like to see them attempt to punish a parent twice for having a healthy child.
*Not their real names.