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AS a person who keeps a keen eye out for medical misinformation on social media, I have been exposed to a world that I would otherwise know very little about – the organised antivaccination movement.
At its core is a simplistic message that may easily appeal to struggling families whose children are facing developmental or behavioural issues. Such a story has unfolded publicly over the past few months, and serves to illustrate many of the factors that may contribute to a family rejecting conventional medical care and incorrectly blaming external forces for their problems.
This story starts in 2012, when a much-loved baby boy was born to a young couple. Although the pregnancy and birth appeared to progress normally, the newborn struggled from the outset, with thick meconium in the liquor, early oxygen desaturation and a seizure within hours of birth. As time progressed, the child was diagnosed with cerebral palsy, microcephaly and frequent seizures. Eventually, he was requiring multiple medications for seizure control, and percutaneous endoscopic gastrostomy (PEG) feeding to minimise aspiration. He had at least one critical episode of pneumonia from which it was not certain he would recover. His story has been told at this fundraiser site, and in this video, where the struggling family have appealed for assistance. Early testing has not revealed a cause for the neurological problems, though a rare genetic cause is considered likely.
It is not clear what first set this family on the road to declaring the child “vaccine-injured”, but, by mid-to-late 2016, they had stopped using the recommended PEG formula, believing that he was allergic to it, and began substituting a homemade organic plant food puree diet, without the advice of a dietitian.
They also stopped the pharmaceutical medications and began giving the child unregulated cannabis oil, supplied by a deregistered doctor who had lost his registration due to personal polydrug use. They became part of a “church” that promotes the use of cannabis as a “healing herb” and, at around the same time, met a non-practising lawyer who encouraged them to “fight the system”. Having found in the neonatal records that the child had his first seizure prior to any vaccination, the narrative changed to “vitamin K damage”.
Fast-forward to 2017, when the family became the subject of a police “amber alert” as they left hospital against medical advice after a booked appointment, fled interstate and subsequently were issued a child protection order because the boy was found to be malnourished – both very thin and with low serum potassium and protein.
As a result, the boy was admitted to hospital for refeeding, against the parents’ will. Both family and community turmoil have ensued. As matters escalated, the family appealed for support on social media, the antivaccination community came on board, and the press followed the story. A petition was started online to appeal to the Prime Minister to “bring (the boy) home”.
Here is a real-life drama – the struggling young family with three small children, one profoundly disabled; the rejection of a conventional medical system that did not have all the answers; the appeal of the cannabis community and the renegade ex-doctor; the support and campaigning of the antivaccination community; the involvement of the law and child protection services … all spiralling towards crisis.
It is relatively unique to be able to see such a story unfold on social media – with live Facebook videos, news stories, financial appeals, and even protests and marches. As sad and frustrating as it is to see all this unfold, it has served to illustrate several important points.
The arrival and care of a severely disabled child brings huge pressure to families. This requires resources of many types – financial, intellectual, social and medical. One of the major stressors on families is the lack of “answers”. What caused this? Why don’t the doctors know? Are they covering up for something they did wrong? Why do they say it must be “genetic” – are they saying our genes are no good? Why do they give him so many chemicals? As parents, don’t we know best? Why don’t they listen to us?
There you have it – encapsulated – the story of many families who feel that their children have been “injured” by the system. Rarely is this factually true, but it may be essential to the family’s coping strategy to have an external locus of blame, an ogre to rail against – be it “arrogant” doctors, the “unfeeling” government, “corrupt” services or “evil” Big Pharma. Is it any wonder that these families are vulnerable to the organised antivaccination movement, plus a range of purveyors of scam therapies? These can give (false) certainty and hope, simple answers, simplistic solutions, validation of suffering and a supportive community – all the things these families are crying out for.
So, understanding all this, what can we do?
We need to understand and support these families, while holding our scorn for those who take advantage of them. We need to explain why we can’t offer false certainty, and how the dishonesty of those who do may eventually harm the family. We need to be advocates for these families in the wider community, and ensure that they get the support they need from reliable services. We must, where possible, avoid the sort of confrontation that makes us look like the enemy, and the “rescuers” look like heroes. And finally, we need those who would take advantage of these families to be held to account.
Dr Sue Ieraci is a specialist emergency physician with 30 years’ experience in the public hospital system. Her particular interests include policy development and health system design, and she has held roles in medical regulation and management. She is an executive member of Friends of Science in Medicine.
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I also wish this sad situation had been prevented, and hope that the family can be safely re-united, and collaborate with the medical team for the benefit of the child. I wrote about this situation, having watched it unfold, to share insights with others abour how this sort of situation can come about. There are far too many charlatans and conspiracy theorists who are ready to embrace and stir up the “rebellion” – generally for their own interests rather than the true benefit of the families.
Ironically, it was the family who chose the move the child away from Queensland – but the state they ran to that eventually decided the child needed inpatient treatment, and acted in his interests.
It’s still very sad- only in August they made a video appearing completely normal without the conspiracies. I really hope they can retrust doctors, find a middle ground and move forward, but with the enablers around them I fear this will be a difficult task. Hopefully while in hospital he has had some positive health improvements that are documented and assist them having an accurate interpretation of his health. If he is doing well it may help alleviate their fear of formula and medication. But if he is doing worse I hope the doctors can admit that too and look at what can be done differently and listen to the families experience ( with a grain of salt). I am not so confident as the same case has been heard already in Queensland where he was significantly more underweight and the parents never lost custody rather it was ruled several times in the parents favour so,clearly it is a murky difficult case and I sincerely hope a middle ground that honours this kids emotional and physical needs is met.
Hi, Amandarose. Like you, I have started with the assumption that the parents were – and remain – well-meaning, and motivated out of love for the child. I have epxressed this in the article. Unfortunately, this was not enough to maintain his safety. The tube re-feeding of a child who is so malnourished that his protein is low is not a simple matter – it requires hospital admission for careful monitoring.
Had the family continued to cooperate with his usual medical carers throughout, the whole episode could have been averted. It’s possible he could have entered a trial of CBD for seizures, and the expertise of a dietitian could have assisted them to maintain nutrition.
However, I don’t feel that I can second-guess the decision of the treating paediatric team to issue a care order. They are personally involved and held to account for their actions. I’m sure paediatric doctors, nurses and social workers are more aware than most of us of the family and social needs of children. If they felt that there was no safe solution other than a care order, I feel confident that their judgement is likely to be more reliable than the rest of us who are watching on.
I still don’t think his best interests are being completely removed from family. This kid has terrible quality of life he can’t eat or talk or communicate and the uncontroled seizures can lead to death from status epilepticus. I agree the crazies they have around them are not helping- there’s an interview online from Dr Pot who shows he’s a bit nassasistic and he really pushed for that appointment to be missed. they have the other hippies telling them food is poison and they ar frighten of allergies I highly doubt he has. One of them has slightly disturbing facebooks live each evening almost advocating violence against case workers and police and the other crazy who has gone quiet lately obsessed with vitamin B injections being the cause despite no reasonable or intelligent mechanism of how this occured. Then the dramas with all theNtivaxxers fighting. So much drama and crazy with this.
Have read online is the protein was low back in January – when he was very clearly starved at 11kg but he did put on some weight as is apparent. It’s not exactly fixable overnight. I would think there might be some merit in the claim he has less tonic clinic seizures as that would be apparent but I bet many of his eye rolls are seizure activity.
I still think there is a solution and it’s not taking this kid off his parents. I wish they could kidnap the whole family and they can be kept away from the nutters. I don’t think it is fair to completely write the family off – hidden in the crazy are legitimate concerns and a desire to try and get a better outcome for him. Unfortunately they don’t have th health literacy to understand fact from fiction and ligitimate concerns from paranoia. Maybe if she accepts some responsibility for his rapid weight loss instead of attributing it all the fluid from allergies and medication we might get some where it addressing the possibility of cannibis oil as a potential treatment, and trialling a ketogenic diet. Accepting some rescue drugs can be nicer and safer for the child would also be a big step forward.
I really am facilitated by this case- all the raw videos and information see things from there side of the crazy is fascinating. And it takes all my self control when they are spouting nonsense online not to correct them and participate in the drama. I couldn’t handle being told to “wake up ” and do my research by some conspiracy theorist.
Yet another anonymous commenter states “The severely disabled child will no doubt die in the not too distant future whatever is done.” The term “no doubt” is misplaced – people with cerebral palsy don’t have to die in childhood, with good care and with adequate seizure control. In this case, the intervention occurred to prevent the child from dying.
Parental sincerity is not enough to keep the child healthy – he requires a competent team around him. providing loving care and affection as well as adequate nutrition, physio and splinting, and health care when required – such as for aspiration pneumonia. It was the action of the hospital system that allowed him to recover from a previous bout of life-threatening pneumonia.
There is no evidence that the child was having less seizures on the altered “regime” (starvation diet and cannabis oil). It may be that his muscles were so weak that his seizures were less noticeable. Certainly there was no EEG evidence to confirm this.
The weight loss was indeed alarming – so much so that the team of paediatricians that examined him certified that he was significantly wasted and malnourished. Not only was his potassium initially dangerously low, but he was also hypoalbuminaemic. Protein malnutrition in Australia is a very significant condition.
On-line commentators cannot judge the situation better than the examining and treating Paediatricians. The documentation that was publicly shown certified that, despite the potassium having improved, the significant malnutrition remained.
Yes – collaboration within a trusting team is ideal. It is unfortunate for all concerned that those who prey on vulnerable families influenced this family to reject the health care team that had kept this child alive since birth. There is also documentation, publicly available, that showed that the treating team had made flexible arrangements to allow for the family’s needs – with which the family did not cooperate.
In situations like this, health care providers are held to account for failing to protect the safety of a child.
Paediatric teams – including nurses, doctors, social workers and others – understand better than anyone how important family is to the health and wellbeing of children. That is a core part of their job. Many steps would have been taken prior to a care order being issued.
I agree with anon above- its really not so simple. there is the emotional health of the child and family as well as the considerations about physical health.
I do not doubt the sincerity of the parents doing what they perceive to be in the child interests. From their perspective he was overweight, seizing multiple times a day and nearly died from aspiration. The medications did not seem to be working and he was not communicating.
what they have tried is not outside the realms of science- a ketogenic diet for epilepsy was initially found from fasting patients having less seizures. Maybe his rapid weight loss at least highlighted that he would be a good candidate for dietary intervention. Then there are the possible links to metabolic disease that may be linked to his formula. Maybe if they worked with the family which I believe was the intention in Newcastle they could have found a workable compromise?They altered his diet and his potassium was as 5.4 when retested. which indicates they maybe overdid it but with that information they can adjust it again.
while his weight loss in January was rightly alarming you can’t expect rapid weight gain now without risk of refeding syndrome. I did not see the justification in the heavy handed approach last month. They were building a relationship with a new Paed, Those things need time and as those blood tests showed he was not even hypokalaemic when they took him. Better for everyone if that had time to build into a trusting relationship.
At the end of the day this non-verbal kid should be with his parents, being well fed will not make up for the lack of love and security he has lost.
There is a reasonable middle ground here and I hope they hurry up and find it as opposed to the adjournments that can happen for years in family court causing even more harm then their parents ever did in some cases. These cases involving kids should be wrapped up quickly so everyone can move forward.
No one is going to do well in this case. The severely disabled child will no doubt die in the not too distant future whatever is done. Might it not be best to leave the child in the hands of the loving parents?
THE MESSENGER generally gets shot when the news is not good.
Trick or Treatment also fabulous.
Sue, a fabulous, humane, restrained and beautifully written article.
Trick or Treatment also fabulous.
Sue, a fabulous, humane, restrained and beautifully written article.
Recommend reading the book SUCKERS…published by Random House….just see how big the issue really is…
This reminds me of a magazine article back in the nineties when HIV was still a death sentence.
The young man and his family bitterly blamed the medical profession for every adverse turn of his shortened life. As he recovered from his initial serious intercurrent illness, the diagnosis was made and communicated to him just before Christmas – how heartless was that? Then through several subsequent hospitalisations where state-of-the-art medical treatment achieved his recovery each time, and through the inevitable failing of his health and life at home, the bitterness against the medical profession increased.
It seems that doctors are sometimes expected to alleviate every misery of life, not simply to do amazing (albeit incomplete) work against illness.
I wish it were so.
You can’t win them all, and there will always be people who are resistant to reason.
Although quack doctors can be reported to AHPRA, unregistered quacks can only be dealt with through more complex mechanisms like a false advertising (“may support immune health”) complaint, which is hard for an outsider to do unless the complaint is based on a printed ad that exists within Australia (as opposed to an online ad posted in Ecuador, or unverifiable word of mouth).
I suspect the most useful person is a trusted family GP, who develops a rapport over years, and is able to articulate uncertainties and indeed, make some errors, but maintain an overall trust relationship. The fast turnover Medical Centre doctors, where the patient is seen each time by a different locum, or the Public Hospital clinic where each visit is with a new registrar, clearly cannot compete with the caring charlatan. As Nobel prize winning economists have noted, price is often a proxy for quality, and it may well be that people are willing to value the charlatan more because they pay him more than their GP.
While loathe to burden teachers more, there may well be a community benefit to educating the young about the advantages of finding and sticking with a good GP. Paradoxically, the anonymous school nurse who comes to do immunisation or health checks may be counter-productive in this respect, if these mass clinics de-value the personal relationship with a family GP – anxious parents like those in the original article don’t get to chat to the school nurse for a long consultation.
A thoughtful and balanced commentary on the wider question at stake.
I am not a doctor. I Can offer some insight though. As someone dealing with a rare neurological disorder for 4 years. All the tests and all the specialists can’t help treat me, or correctly diagnose my inflammatory condition. I am on my third diagnosis now, that is still not difinitive. It feels helpless. I can see how a family with a sick child could fall into the arms of a group or “church” that reaches out, supports them and shows empathy. In my case, my illness started 3 weeks after an array of travel vaccines. I know I’m not “vaccine injured.” I also know that 4 years of struggling with no answers and little support from the medical profession, could easily sway people. Perhaps we need to be looking into how doctors deliver information and how the medical world supports people in similar situations. Just a thought.
The anonymous commenter who posted comment #7 has continued to spread exactly the type of misinformation that has been circulating on-line. This has characterised the case as it has unfolded. It is not correct that the child was doing “extremely well” – documents have been posted publicly which certified that he was severely malnourished under the parents’ feeding regime. His parents may well be loving and well-meaning, but their lack of knowledge of the correct nutrient regime has, unfortunately, harmed him. That is why dietitians are involved in designing appropriate diets.
Perhaps it is useful to have such comments appear here – it serves to illustrate the mentality of people with fixed anti-vaccination and anti-science views.
This report failed to disclose that this child was doing extremely well on his organic diet and was virtually seizure free on it. His face did not look at all like that of a malnourished child. Court rulings in March apparently ruled Cini and Mark as good and responsible parents.
He was forcibly ripped from his mother’s arms over 3 weeks ago by a large group of police and FACS workers and has apparently not seen his family since.
This, and doctors’ blatant lack of knowledge on nutrition and injected proven toxins, are why people are losing trust in the system.
What I find deeply disturbing about this particular case is that the parents are completely resistant to logic and reality. They post videos of the child having gelastic seizures but misinterpret them as the child laughing and happy. They have videos showing the child clearly looking malnourished but it has been misinterpreted as him being “of slim build” like his mother.
They are also not helped by some completely irresponsible health practitioners, who are actually registered by AHPRA but who also buy into the anti-vaccination rubbish. This includes at least one GP who I have reported to APHRA but not yet heard back from them.
THE EVIL CHARLATANS who prey on such people…are in fact well-meaning idiots. Sometimes they are highly educated, but idiots nonetheless.
However that does distinguish them from normal conmen who deliberately exploit their victims. These deluded “healers” have charisma and some compelling religious dogma wrapped up in floral pseudoscience.
Normal rational and reasoned approaches will change neither the healer nor the disciple.
In such cases only the full weight of punitive law can protect the innocent.
As long as celebrities from the Queen to Lady Cilento and Olivia continue to give their imprimatur, it is difficult to stamp out this scourge. I too have had a patient succumb after being talked out of chemotherapy for his bowel cancer.
Els Baker there are multiple avenues available to you should you wish a “deeper look into the damage caused”. You could complain to the individual. You could report your concerns to APRHA (for free). You can go and see one of the many medical malpractice lawyers who will hear your “evidence” for free. You could do some research and actually quantify and measure your claims. Or you could stop presenting straw man arguments.
unfortunately social media allows the promulgation of ‘fake facts’ and ‘fake news’ with no censorship ; I read much medical and scientific rubbish on Facebook and try to provide a balancing viewpoint where I can. Vaccination is a fertile ground for the charlatans, but also areas like arthritis and cancer, lots of conspiracy theories etc. We are living in the age where anyone can put forward a premise without any proof whatsoever; hard to know how this is going to be regulated.
Yes, definitely, but this is not exactly a common place occurrence.
Maybe there also needs to be a deeper look into the damage caused on a regular basis by less than competent doctors and surgeons.
What an insightful and sensitive essay, Sue.
I would add that what these families need is someone they know and trust, and who knows them, who they can reach out to and who will be available in times of crisis. Often these will be after hours and on weekends. As clinicians, we need to anticipate this and contribute to closing these gaps in continuity of care from a known and trusted clinician. Perhaps this is an unmet need that the “charlatans” provide?
“There you have it – encapsulated – the story of many families who feel that their children have been “injured” by the system. Rarely is this factually true, but it may be essential to the family’s coping strategy to have an external locus of blame, an ogre to rail against – be it “arrogant” doctors, the “unfeeling” government, “corrupt” services or “evil” Big Pharma.”
“Since 1988, over 18,247 petitions have been filed with the VICP. Over that 29-year time period, 16,430
petitions have been adjudicated, with 5,482 of those determined to be compensable, while 10,948 were dismissed. Total compensation paid over the life of the program is approximately $3.7 billion.” (https://www.hrsa.gov/vaccinecompensation/data/).
” iatrogenesis may cause 225,000 deaths per year in the United States (excluding recognizable error). An earlier Institute of Medicine report estimated 230,000 to 284,000 iatrogenic deaths annually.”(Starfield B (July 2000). “Is US health really the best in the world?” (PDF). JAMA. 284 (4): 483–5. PMID 10904513. doi:10.1001/jama.284.4.483.)