Complaints were made to Sydney Children’s Hospital, and twice to the Medical Board and the Health Care Complaints Commission (HCCC), with very detailed explanations why Alina’s illness simply could not be of genetic origin, and easily explained as a chronic Enterovirus. To even include unusual symptoms demonstrated in both Alina’s parents and grandparents.
Their responses are below with Alina’s father’s comments inserted where applicable.
From Dr Mary McCaskill, Acting Director Clinical Governance and Medical Administration -Sydney Children’s Hospital Network
On 11 November 2017 Alina had her first onset of seizures, she had a prolonged focal seizure. This presented as saliva pooling in the corner of her left mouth and clenched jaw then left hand and left mouth twitches/jerks, eye and head deviation to left. The seizure lasted 45 min in duration and ceased following the administration of midazolam. Alina developed a wheeze and stridor following the administration of midazolam and was administered dexamethasone. Alina was reported to have a normal neurological and general examination and after a period of close observation in hospital Alina was discharged home on no ongoing anticonvulsant treatment…
…The causes for this are varied and may include infective meningoencephalitis, structural brain diseases such as ischaemic stroke, inborn errors of metabolism such as non ketotic hyperglycaemia, mitochondrial disease, e.g. POL-G, and autoimmune conditions such as Rasmussen encephalitis and limbic encephalitis to name only a few
…On 5 December, Alina developed an ataxic or tremulous “movement disorder” in which she would become uncoordinated and jerky with non-rhythmic movements of her limbs yet not altered in her awareness during these movements
…In relation to the use of the ketogenic diet, a review of Alina’s case confirmed that she was resistant to the ketogenic diet. Alina continued to have her enduring seizure state despite being optimally ketotic on the ketogenic diet. The administration of glucose did not contribute to Alina’s poor response to treatment. The glucose administration was not a direct link and had no bearing to the subsequent issues Alina faced
…In January 2018, Alina’s Hb1Ac (a marker of glucose tolerance) was tested. These tests revealed that Alina’s Hb1Ac was 4.5% (N:4-6%) and therefore she did not have glucose intolerance…
Dr McCaskill recongises the start of the illness and yet fails to realise that these are the same “red flag” symptoms of a viral EV71 seizure; Heavy drooling, stridor (and croup) resolved with midzolam (raised as a concern by Alinas GP and documented in her GP medical record)
Also as noted, but unmentioned by Dr McCaskill, Alina’s sensitivity to loud noises, tonsillitis, rash around mouth, a significant change in health following the 18 month MMR vaccination, persistent cough, temperatures (and sweaty head) and eye deviation
It is also worth noting that during times of elevated stress (which resulted in seizures – following CPAP in particular). Interestingly, there is a video to demonstrate the result of stress (elevated cortisol/glucose uptake?) and increased levels of ataxia, shown to the neurological team on the 5th December. Resolved instantly with the simplest of stress relief solutions, a video of both before and after her crying. (supplement C). It was also at this same time, the father was reassured by Dr. Sandi that there was no such thing as an afebrile persistant virus.
The claim that Alina was resistant to the ketogenic diet is extremely false, likely derived from the fact that the neurological team, who were in charge of this diet, (as well as EEG reports) seemed to go to great lengths to hide its effectiveness from publication (for unexplained reasons), but a symptom noticed by the parents very quickly, (who were incredibly frustrated, and met with tremendous resistance from the them in establishing an improved diet ratio) alongside phenobarbitone, anakinra and midzolam the ketogenic diet was very successful in treating Alina, as agreed and recorded on audio by ALL members of the neurological team. Very strangely not a single team member chose to document this. A proposed explanation linking glucose and the EV71 virus is within the diary pages
Enterovirus 71 Infection with Central Nervous System Involvement, South Korea
(2010 Wi-Sun Ryu et al)
- We detected EV71 rarely in the CSF of our patients. Possible explanations include the transient presence of the virus in CSF, a lower viral load in CSF, and use of an EV PCR assay that had not been optimized to detect EV71
- We confirmed that EV71 commonly involved the brainstem and cerebellum, and therefore ataxia is not uncommon in EV71 infection with CNS involvement
Global emergence of Enterovirus 71: a systematic review – (2022 – Gayatree Nayak et al)
- The most frequently observed disease in EV71-infected patients is pyrexia (eighty-one per cent) with a skin rash (seventy per cent), insomnia (sixty-six per cent), vomiting (sixty-two per cent), lethargy (forty per cent), myoclonus (sixty per cent), and ataxia (forty-two per cent). CSF (cerebrospinal fluid) evaluations were carried out in 47 clients, where 45 were pleocytosis, 94/ml median, 15–920/ml range among them. However, none of them had viruses isolated from specimens of CSF. The most frequently diagnosed vector of CA16 was HFMD, while CA5, CA9, and CA10 were statically identified as HFMD as a source among other recognized HFMD enteroviruses
- In specific congenital malformations and maybe in some instances of diabetes, they can also play a part
It was not only agreed by all the neurological team over the course of her stay that the ketogenic diet was highly effective in not only controlling the seizures, but also an indicator of her seizure activity; high seizure activity was associated with high glucose levels. Reduce seizure activity was associated with high keytone levels. Dr Sampaio even remarks himself “Definitely! it’s the only valve”
A summary of effective treatment for the illness below, derived from the previous decade of observations and research…
Enterovirus and Encephalitis – (February 2020 Bo-Shiun Chen et al)
- Although EV-A71 also invade the CNS, the infected areas are quite distinct compared with poliovirus. Brainstem encephalitis is the most common neurological presentation of EV-A71 infection
Diagnosis and Management of Autoimmune Encephalitis – Cleveland Clinic
- It is also important to consider carefully what objective measures will be used to determine clinical response to immunotherapy. These may include but are not limited to: clinical examination, neuroimaging, EEG, neurocognitive testing…”
First-line Therapies:
- Intravenous Methylprednisolone (IVMP): 1g daily x 5 days followed by oral prednisone 1mg/kg (maximum dose 60-80mg daily with a prolonged taper)
- Intravenous immunoglobulin (IVIg): 400mg/kg/day x 5 days
- Plasmapheresis (PLEX): 5-7 exchanges over 10-14 days
Second-line Therapies/Long term immunosuppressive agents:
- Can be given as monotherapy or in combination for refractory disease activity 1-2 weeks from the completion of first-line treatment acutely.
- Rituximab (Rituxan/Ruxience):
- 1000 mg IV repeat dose in 2 weeks (Preferred agent given safety profile)
- Cyclophosphamide:
- 750 mg mg/m2 (maximum 1000 mg) IV once with pre-hydration initially
Adjuvant therapies for long-term immunosuppression and steroid sparing.
- Rituximab 1000 mg every 6 months
- IV cyclophosphamide 750 mg/m2 IV monthly or oral cyclophosphamide 1-2 mg/kg/day
- IVIg 2g/kg dose over 2-5 days repeated every 3 weeks
- Mycophenolate mofetil (Cellcept)
- Azathioprine (Imuran)
Alina only received IVMP, and IVIG. As parents we quickly realised the significance of the 18 month MMR vaccine, chronic virus and the family history, but autoimmune treatment was denied as Dr Sampaio had committed himself to prove this was a genetic cause, notably evidence that he himself was attempting to generate
Pediatric Autoimmune Encephalitis, (2017 Apr-Jun, Massimo Barbagallo et al)
- The autoimmune process may be triggered by an infection, vaccine, or occult neoplasm
- AE is well responsive to immune therapy, with prompt diagnosis and treatment strongly beneficial
- The prognosis is often good in pediatric age, with 85% of full but slow recovery (up to several months) and relapse in the remaining 15%
Anti-glutamic acid decarboxylase encephalitis
- Glutamic acid decarboxylase (GAD) is an intracellular enzyme responsible for the synthesis of the inhibitory neurotransmitter GABA. Anti-GAD antibodies have diverse clinical correlates, including stiff person syndrome, cerebellar degeneration, autoimmune epilepsies, limbic encephalitis, and type 1 diabetes. Pediatric patients with high titers of anti-GAD in the CSF have manifested with focal seizures (often arising from the temporal lobe), cognitive and memory decline, progressive developmental delay, and psychiatric symptoms. The CSF may appear normal or with the presence of oligoclonal bands. The MRI and EEG may show abnormalities arising from the limbic structures. Patients with anti-GAD antibodies usually do not have underlying tumors.
- At present, no clinical trials have assessed the optimal treatment in AE. Accepted first-line therapy for every AE includes high-dose corticosteroids (methylprednisolone 30 mg/kg/day, up to 1 g daily, for 3–5 days), followed by or combined with IVIg (2 g/kg divided over 2–5 days). Steroids are then tapered using 1–2 mg/kg/day orally, on average for another 12 weeks, adjusting the dose according to patient tolerability or possible side effects. If no benefit is noticed, plasma exchange (PLEX), 3–5 exchanges over 10 days, should be considered.
- If there is no significant clinical improvement after 10 days with these first-line therapies, second-line therapy (rituximab and/or cyclophosphamide) should be started. Rituximab (375 mg/m2 every week for 4 weeks) is usually well tolerated in children and so is preferred to cyclophosphamide (750 mg/m2 monthly)
Should there have been any doubt to the success of the procedural treatment the parents begged for (Chronic A71 related/Anti-GAD and highly responsive to the Ketogenic Diet) an almost duplicate case to Alinas condition was published (details below) in 2022 from a case in 2018 that followed the above guidelines, following a patient who’s presentation only differed in having Tonic-Clonic movements in his right arm, as opposed to Alinas left. Once you include the information from the transfer notes, the emails, images and points raised by the parents, the agreed effective medications (such as the Ketogenic diet), then the illness is very easily recognised and treatable. All this information is available within this web diary and the largely unrequired academic research included to verify the prodromal illness as chronic EV71, alongside explanation for the failures in testing equipment used by NSW Pathology
Favorable response to classic ketogenic diet in a child with anti-GAD 65 antibody mediated super refractory status epilepticus. (2022 Jun 7, Deepika Sivathanu et al)
- A ketogenic diet has been sparingly used for the management of post-encephalitic epilepsy and autoimmune epilepsy. However, the data on the effectiveness of the ketogenic diet in the management of autoimmune encephalitis is scarce. Starting KD early in the disease course helped not only in seizure control but also preserved the cognitive and neurological well-being of the child.
- A 7-year-old developmentally normal boy presented to the emergency room with a low-grade fever of 5 days duration followed by multiple episodes of seizures. The seizure semiology included lip-smacking movements and right upper limb tonic-clonic movements lasting for around 2 min.
- Majority of children with autoimmune encephalitis present with seizures in the form of status epilepticus (SE) or super refractory status epilepticus (SRSE). SRSE is the SE that fails to terminate more than 24 h of anaesthetic infusion or recurs on weaning of the infusion. This child also presented with SRSE following a mild prodromal illness.
- CSF oligoclonal bands, anti-TPO antibodies, ANA, and anti-NMDAR antibody titers were negative. While serum and CSF GAD-65Ab were positive (serum GAD-65 antibody titre: 221 IU/ml(0–17) and CSF GAD-65 AB titre:218 IU/ml [0–17]). Hence a diagnosis of anti-GAD-65 Ab-associated AIE was made.
- On day 7, second-line immunomodulation therapy with rituximab (750 mg/m2) was given
- The child is on regular follow-up for more than a year. A serial clinical examination with developmental assessment is being performed at every visit.
- He remains seizure-free and can attend regular school with good scholastic performance. His Modified Rankin score was 1 at the last follow-up
…While there were some slight improvements to Alina’s condition she had ongoing deteriorations of her seizures in addition to her EPC. The teams at the time felt there was some association with low ketones…
…Alina was presumptively treated with multiple anti-seizure medications, multiple courses of antibiotics and multiple autoimmune therapies and dietary therapy for epilepsy pre-emptively but she did not respond to any these therapies..
Midazolam had immediate benefit, stopping the first two seizures immediately, and even with deteriorating returns was shown to be incredibly effective as the illness progressed. As did clobazam,and phenobarbitone. The recognised and improved ketogenic diet (post Christmas in particular, once the ration had been established at 4:1) proved effective enough to plan to discharge Alina from the hospital in the New Year after a tonsillectomy.
She responded very positively to anakinra (Also an autoimmune drug, a less potent but more specific variation to Rituximab), so much that within 7 days she went from a month’s duration of heavy non-stop seizures to one where she was attempting to communicate and respond. Once this medicine wore off, since it has a short half life, she quickly returned to the previous state of heavy non-stop seizures (awake or asleep). This was also reflected in the EEG charts, videos and noted by ICU and neurologists.
This could have only occurred if the illness was a consequence of elevated Interleukin-1 (Il-1) and subsequently reduced with a very specific medication; anakinra, fitting exactly with the explanation of chronic viral EV71, and this illness was a treatable condition
Prior to the noted improvement, the parents had agreed to palliative care, however following the success of anakinra, Dr Cardomone postponed this final step as Alina was no longer in a vegetative state.
Despite obvious improvements he then withdrew anakinra alongside the other effective treatments for EV71; magnesium and midzolam (and this was long before the return of the exome full genetic report) with the clear intention of forcing suffering to Alina
This was highly unethical and manipulative, suggestive of a culpable and purposeful intention to cause or hasten Alina’s death.
So, the question that really remains, why wasn’t this medicine given to Alina again, or before (on admission)? Alina had a medical history of a chronic virus, with description and images emailed to Dr Sampaio.
Despite every single test returning negative for a genetic cause, Dr Sampaio chose to ignore these and question their reliability. Dr Sampaio did not chose to question the reliability of the viral testing equipment used at Sydney Children’s Hospital, which has a very documented high rate of failure in identifying Enteroviruses (developed within the webdiary)
…Alina received a course of Anakinra on 9 February 2018. The parents reported to staff that they felt that Alina’s response to Anakinra was positive but Alina continued to have significant clinical and electrographic seizures despite the course of Anakinra..
…Alina’s course was typical of a supra-refractory status epilepticus from an inborn error of energy metabolism and whole exome sequencing identified a mutation in CARS2, a mitochondrial cysteinyl-tRNA synthetase gene which is known to cause mitochondrial dysfunction
… On the 22 March 2018, genetics results of the whole exome sequencing study had shown a likely pathogenic mutation in the CARS2 gene. The importance of this finding was that it provided evidence to the suspected clinical diagnosis of a likely incurable mitochondrial disorder…
Since it is now proven that Alina did not have CARS2 dysfunction, what did she have? Given that the genetics team researched and focused on every mitochondrial gene, from POLG to the very rare CARS2, an illness with slow but noticeable markers and deterioration over 20+ years. Even going as far as fabricating CARS2 as a theoretical possibility in silico in Helsinki. The database of 230,000 gene samples found no matching example related to these symptoms of a mitochondrial dysfunction, so the Hospital invented one.
It would be an interesting explanation to hear how even in month 4 the ICU Doctors and neurologists openly said they didn’t know what this illness was, prior to trial of an autoimmune drug and before the return of the Exome report. (audio within diary)
An autoimmune drug was trialed and shown to be clearly effective in both reducing the seizures, and when the drug was withdrawn, the seizures returned. The Exome report confirmed all previous tests of no known genetic illness.
How then could the cause be then considered Genetic?
The CARS2 gene wasn’t even close in symptoms, however it was the best the hospital could do given an apparent and desperate need to avoid gross medical error by reckless endangerment resulting in an unlawful death, The neurologists chose to falsify this as a genetic illness and thus avoid investigation, accountability, compensation.
Incidentally, the parents were made aware the cost of ICU was in the region of $5,000 a day. Alina spent 104 days in ICU
…After reviewing Alina’s case we can confirm that the administration of glucose did not contribute to her poor response to treatment. Alina had a rare in born error of energy metabolism, a mitochondrial disorder secondary to a genetic mutation in the CARS2 gene. Alina’s condition manifested as an enduring seizure state called status epilepticus
…In relation to the use of the ketogenic diet, a review of Alina’s case confirmed that she was resistant to the ketogenic diet…
It was abundantly clear with glucose being a significant trigger to the development of this disease, a fact reported many times by the parents, noted even as early as the 16th November 2017 regarding the change in formula from Karicare (reporting the replacement was making her wheezy). It wasn’t just a parent’s opinion, but a demonstrated fact following testing on 26th December and even marked “seizure!” on the nurses’ report card. Elevated Glucose caused Seizures. It was also agreed by all members of neurological team, both Dr Sampaio and Dr Cardamone were using the incredible response to the diet as a measure of seizure activity, and in trying to from a diagnosis.
In Court, falsifying medical reports and declarations is a criminal offence.
…I am sorry Mr Murtagh felt Dr Foster did not act appropriately during the conversation prior to Alina’s death. I am aware that Dr Foster has also recently written to you to offer you her sincere apology for any pain or distress caused by her interaction with you at the time. I would like to assure Mr Murtagh that SCHN take these complaints seriously and the ICU team have thoroughly investigated this issue and found that Dr Foster acted appropriately and apologies of any misunderstanding or miscommunication of the discussions on this day. From reviewing the matter, we believe that support from Social Work may have benefited the family at the time and the ICU has taken this lesson on board.
No letter was received from Dr Lily Foster. Being informed that the ICU has learnt a lesson is of no consequence either to the parents who still suffer from this conversation; a Doctor who gave a detailed and terrifying explanation over the patient’s bed of how morphine would cause a patient’s lungs to collapse, how long it would take, and not knowing if it was painless or not. Then the parents then had to live this scenario only a few weeks later, while holding their only child.
- Treating your patients with respect at all times
- Recognising that there is a power imbalance in the doctor–patient relationship, and not exploiting patients in any way, including physically, emotionally, sexually or financially
- Communicating bad news to patients and their families in the most appropriate way and providing support for them while they deal with this information
Australian Medical Code of Conduct
…Unfortunately for Alina the clinical course was typical for a medication resistant EPC, from a mitochondrial disorder, which is untreatable. We would like to reassure Mr Murtagh and his family that Alina received the best standard of care possible. The treating team consulted with numerous medical teams across SCH (including sleep and respiratory, infectious diseases, genetics, metabolic, immunology, rheumatology, ENT), neurologists at Children’s Hospital at Westmead, and Neuroimmunologist from the Children’s Hospital Texas
…I acknowledge that Mr Murtagh does not wish to meet with SCHN staff at this time, however, please note he is welcome to contact us should he change his mind
Alina and family received far from the best standards of care. The arrogance of the neurologists and their unwillingness to acknowledge the symptoms or experience of others that was not of their own choosing resulted in multiple arguments, gaslighting, falsification of notes and diagnosis, incredible suffering and abuse to a child, and finally her death.
Consulting with external hospitals and offering incomplete information is nothing more than an exercise in confirmation bias. Had Dr Sampaio consulted with Alina’s GPs, a very clear pattern would have been noticed: a chronic enterovirus, after which all other aspects, symptoms and responses of the illness fall exactly into place.
The actual response below from the Hospital when requesting an explanation after their official response to the Medical Board & HCCC:
“Please note: that any further correspondence received in this matter will be read and placed on file. If you have a new complaint unrelated to matters already raised, you can lodge this with us by completing our webform.”
- Providing a prompt, open and constructive response, including an explanation and, if appropriate, an apology
Australian Medical Code of Conduct
The actual response from the hospital can be summarized as: lie, deny, don’t reply!
Statement from Dr Hugo Sampaio to the Medical Board and HCCC
…It is correct to state that on several occasions Alina was prescribed doses of medications, most specifically antiepileptic medications, at higher doses than recommended. This is not unusual practice as for many of these medications the only data available is for adults and we know that children often metabolise medications faster that adults and consequently require higher doses. For many of the medications we are able to monitor for toxicity using therapeutic drug monitoring and also liver function testing. There was never a concern in either regard in Alina’s case. We also have the failsafe of multiple opinions regarding doses (detailed further below) and pharmacist review of all medication charts.
“I do wonder if we gave her too much medicine sometimes”, the reason given when asked why Dr Sampaio withheld medications for a very clear generalised seizure on the 12th January, in which she lost 50% of her cortex over a 7-day period. Implying that he had misjudged the situation on previous presentations, then applied that misjudgment to a new and different presentation (from a different set of circumstances – with an adenovirus, and so a different treatment and response being required).
- Recognising what has happened
- Acting immediately to rectify the problem if possible, including seeking any necessary help and advice
- Acknowledging any patient distress and providing appropriate support
- Only recommending treatments when there is an identified therapeutic need and/or a clinically recognised treatment, and a reasonable expectation of clinical efficacy and benefit for the patient
- Taking steps to alleviate patient symptoms and distress, whether or not a cure is possible.
- Giving priority to investigating and treating patients on the basis of clinical need and the effectiveness of the proposed investigations or treatment
- Placing the interests and well-being of the child or young person first
- Doctors have a duty to make the care of patients their first concern and to practise medicine safely and effectively. They must be honest, ethical and trustworthy
Australian Medical Code of Conduct
…In Alina’s case she proved refractory to all conventional antiepileptic medications, and also the ketogenic diet, canibidiol oil, metabolic and immune treatments (detailed further below).
- Keeping accurate, up to date and legible records that report relevant details of clinical history, clinical findings, investigations, diagnosis, information given to patients, medication, referral and other management in a form that can be understood by other health practitioners
- Being honest and not misleading when writing reports and certificates, and only signing documents you believe to be accurate
- Taking reasonable steps to verify the content before you sign a report or certificate, and not omitting relevant information deliberately
Australian Medical Code of Conduct
I think you only have to read the notes (even limited in inclusion), and the actions taken by the neurologists to protect the status of the diet, and listen to the audio within the webdiary to realise this is untrue on all counts. A diet that was so evidently significant in treatment is so obviously absent from the hospital notes.
A contradiction to the Medical Code of Conduct, a promoted adage by the British Medical Journals advice on Writing Medical Notes (2016) “if it isn’t written down, it didn’t happen.”
Comments from the neurologists during meetings include:
“because of the ketogenic responsiveness…” Dr Sandi (18.12.17)
“The fact that she is responsive to the ketogenic diet… the ketogenic diet, I have to agree does seem to be helpful…. The ketogenic diet may have played a role” Dr Sampaio (20.12.17)
“We think it has been a factor… in general principle we are on the same page… we concentrate on the diet” Prof. Annie Bye (27.12.17)
And following improvements to the diet ratio:
“She looks good… a big change” Dr Denise
“So alert… we’re on a winning track with the diet being helpful…. We’re on a winning track with the diet!” Dr Pillai (31.12.17)
“Sugar based? Definitely off the menu!” Dr Emma (03.01.18)
“I don’t disagree the diet does help… the diet is just a small valve… you’re definitely right, it is the only valve” Dr Sampaio (22.01.18)
“because she has been so responsive to the ketogenic diet” Dr Cardamone (06.02.18) – who was focusing his diagnosis based on this undeniable association
I believe that is sufficient proof to confirm that by his own words and actions as well as those of his team, Dr. Hugo Sampaio is a liar.
…Alina did not satisfactorily respond to any of these interventions.
However, she did respond positively to the interventions. The responsibility of recognising the significance and association with known diseases falls on the knowledge, management, and ability of the leading doctor (Dr Sampaio) to make them satisfactory. However, he appears to had made a snap judgement of an incurable genetic illness from the beginning, so primed himself with excuse for any failure and wrote the notes to only support this; he filtered the hospital notes to exclude or downplay the history, symptoms and remedies that did not match his initial assessment and was inflexible despite the presentation of new information or advice from colleagues. Eventually it became obvious, and so he has since responded by lying, the hospital has supported this with an orchestrated and fabricated genetic report.
- Complying with any relevant policies, procedures and reporting requirements
- Being honest and not misleading when writing report
Australian Medical Code of Conduct
…In the last 2 decades there has been an explosion of research into immune causes for epilepsy and other neurologic problems. This has led to successful therapeutic trials of immune modulation in a variety of conditions, including refractory epilepsy. As such we (paediatric neurologists) are constantly on the lookout for immune presentations which may be amenable to treatment.
- Assessing the patient, taking into account the history, the patient’s views, and an appropriate physical examination. The history includes relevant psychological, social and cultural aspects.
Australian Medical Code of Conduct
Even with limited medical knowledge and only the internet, the parents could accurately estimate the best course of action, action that should have occurred in December or even earlier. The parents have total confidence had this medicine been used earlier, Alina would have made a full recovery, similar to the 2022 paper by Deepika Sivathanu.
…Alina did not have any evidence of immune activation in her evaluations (blood, spinal fluid and MRI tests)
The history of the illness demonstrates it falls exactly within the control group and category of chronic metabolic diseases for biopterins. An audio conversation is available within the webdiary with Dr Cardamone regarding the consultation with Prof.Dale. The markers are only valid if the patients medical record is considered. However, Dr Sampaio chose to exclude long Alinas medical history at the first consultation
…I reviewed this extensively, including with experts in the field (internally and externally).
Ignoring the medical history and providing limited information, and selective bias, so implying this was an acute illness as opposed to chronic has of course returned a different diagnosis. The Medical history was even mentioned in the transfer notes from Canterbury Hospital
The mum summarises it better in the recorded conversation (06.02.18), even without access to the medical notes she is suspicious of the motivation and attitude of the neurology team: It was only evident on reading the Hospital notes far later, that the Neurologists were hiding a far more significant amount of information
“the communication [with external Immunological Doctors] did not mention to these people the fevers, the upper respiratory tract infections, or prone to croup… if that information is not there, then its mitochondrial, if you add this information, then you have some other diagnosis…. There could be a lot of missing information about her croup, and cough, and fevers!”
…Despite this lack of evidence we did embark on empiric immunotherapy given her very refractory epilepsy and the perceived relatively low risk of treatment. This included high dose methylprednisolone and intravenous immunoglobulin early in her admission, this was repeated one month later. She did not show any response on either occasion. Further immune therapy is detailed in her case summary which occurred after my transfer of care, similarly without apparent benefit.
The significant reduction in anti-GAD levels and improved thyroid hormone levels is a clear example of the improved response. iViG was indeed repeated a month later, and on this occasion, Dr Sampaio went to extraordinary length in sourcing a glucose free solution from the Red Cross, in recognition and acknowledgment of the consequential and damaging effects of the elevated glucose.
To claim “without apparent benefit” following anakinra is yet another lie, videos available within the webdiary
- Being honest and not misleading when writing reports
Australian Medical Code of Conduct
…Responding to the specific concern raised regarding the potential for a viral cause for Alina’s presentation, I would like to note the following: to date viruses have not been found to be a common cause of EPC. Given the rarity of the problem we do, however, cast a very wide net in terms of clinical investigation. I note enterovirus 71 (EV71) has been specifically questioned. Alina did not display the typical characteristics of this virus. While this virus can cause myoclonic seizures it is its effect on the brainstem and spinal cord which is most devastating, in that it causes a polio- like syndrome. It has been pointed out that spinal fluid testing is not completely accurate in the testing of EV71. This is correct in that spinal fluid does not always return positive results in patients with proven EV71.
“does not always return positive results” is a generous interpretation of a test that has 0-3% accuracy in these conditions. Effectively useless. As discussed earlier on this page, the presentation matched exactly that of EV71 encephalitis
“to date viruses have not been found to be a common cause of EPC”
Encephalitis Associated With Glutamic Acid Decarboxylase Autoantibodies in a Child A Treatable Condition? (Christian M. Korff, MD, Aug 2011)
Or…
Enterovirus-Associated Brain Stem Encephalitis Mistaken for Epilepsia Partialis Continua
(Neuropediatrics 2016 – E. Schuler et al)
- Being honest and not misleading when writing reports
- Keeping your knowledge and skills up to date.
Australian Medical Code of Conduct
What we have learned (and published) is that if enterovirus is suspected, multiple specimens should be sent and also that, even though the virus clearly affects the nervous system, spinal fluid analysis is a relatively low yielding test. Our standard practice is to send multiple samples and in previous outbreaks we have been able to identify the virus in virtually all suspected cases using this approach. Although EV71 was not considered a likely cause for Alina’s presentation she did in fact have enterovirus testing on 15 samples (throat, nose, stool and spinal fluid) during the course of her admission.
Correct, and exceptionally low yield, and the poorly calibrated PCR appears to have reported a chronic (-ve strand RNA) enterovirus, as a +ve strand RNA rhinovirus 4/4 times over 12+ days from admission. Similar to the GP’s testing (10/05/17). Only one stool sample was taken in this period (09/01/18), again likely calibrated to look for +ve stranded RNA only.
- This case demonstrates the difficulty in diagnosing enteroviral meningoencephalitis due to non‐specific symptoms and the low index of suspicion. It is thought that, in enteroviral infection, the virus is always detected in the gastrointestinal (GI) tract. However, in chronic encephalitis, by the time the disease is presented, the virus has seeded the central nervous system (CNS) and may have cleared from the GI tract and be undetectable in the stool
- “Keeping your knowledge and skills up to date.”
Australian Medical Code of Conduct
…In addition, the only known treatments for EV71 are high dose steroids and intravenous immunoglobulin, both of which she received multiple courses of.
Given Dr Sampaio’s willingness to over prescribe multiple medications approaching that of twice an adult (by her weight), I have no doubt that if he had the ability to recognise or even accurately document the symptoms, recommendations of a far more successful course and approach; such as anakinra, plasmapheresis, rituximab… there are numerous autoimmune treatments, all demonstrated effective against EV71. Dr Sampaio did not even complete first line Encephalitis treatments in his statement, he is excusing himself with “tickbox doctoring”
- Keeping your knowledge and skills up to date.
- Ensuring that your practice meets the standards reasonably expected by the public and your peers
Australian Medical Code of Conduct
…Alina’s case was complex and I was grateful for the help I received from colleagues. At Sydney Children’s Hospital neurologic cases are assigned to a lead consultant. In Alina’s case this was me as I was on call when she first presented on the 15th November 2017. I remained her primary consultant until the 20th January 2018. It is not uncommon for cases, particularly complex ones, to change hands for a fresh set of eyes. On this occasion it occurred as a result of a parental request. I recall feeling fraught at the time regarding the transfer of care as Alina was so complex and I had months of accumulated knowledge regarding her case. Ultimately though I did not see an alternative as Mr and Mrs Murtagh has lost their trust in me and our therapeutic relationship could not be salvaged.
Dr Sampaio demonstrates yet further misdirection. He knew exactly the reason why he was dismissed, he even apologised the following day when returning from his tennis holiday that he “just didn’t react in time” to “the different type of seizure”. Alina had suffered so much prior to intubation. It was not a surprise to him.
…I regret that this breakdown occurred but I would seek to reassure them that all through my time as Alina’s primary consultant, and even after handing over her case, I sought the guidance of colleagues within my department and also experts in the field. The latter included Professor Ingrid Scheffer (Royal Children’s Hospital Melbourne), world renowned and most respected paediatric epileptologist in Australia; Dr Deepak Gill (Children’s Hospital Westmead), head of the epilepsy programme; Dr Christopher Troedson (Children’s Hospital Westmead), paediatric neurologist and Professor Russell Dale (Children’s Hospital Westmead), world renowned expert in the field of paediatric neuroimmunology.
However, Dr Sampaio completely failed to contact the GP for Alina’s medical records to confirm the parents reporting of her chronic viral medical history, with one GP advising the father of this very outcome, this failure resulted in endangerment of the patient and subsequent misdirection of opinion by reply to any consult, not allowing for an alternative perspective or balanced suggestion.
…I have reviewed their responses to me and am comfortable we followed through on all recommendations. I also consulted multiple specialists from other disciplines within Sydney Children’s Hospital, most notably paediatric intensive care, immunology, sleep medicine and ENT. I am most grateful, however, for the help of colleagues within the neurology department at Sydney Children’s Hospital.
…In summary, I trust this response is helpful in your determination of the facts in this highly tragic and complex case. I remain at your disposal to answer any further queries. In his complaint Mr Murtagh makes some comments about his perception of my attitude and motivation.
From the response above, and that from the Hospital, I hope it is clear that the comments being made do not reflect my true attitude and motivation.
It appears Dr Sampaio is more motivated in falsifying and filtering the hospital notes from very consultation and admission, driven to prove an unlikely disease as suspected by the father from mid December, and supported by the neurological team who also failed to update the Hospital notes with symptoms and responses
“We are actually working as a team… we totally endorse so far what Hugo has done and his investigations” (audio 23.01.18)
The reply from the Medical Board and Health Care Complaints Commission, on reading accounts from Dr Sampaio, the hospital and the parents
The peer paediatric neurologist provided a comprehensive clinical advice, as follows:
“The most likely cause of Alina’s condition was a progressive neurological disorder, of genetic origin. A mitochondrial disorder was likely, but that expert geneticists in the field would be best placed to consider whether the CARS2 genetic mutation was the specific cause. It is not the Commission’s role to determine the cause of Alina’s death.”
The Medical Board, like Dr Sampaio, is possibly attempting to link the illness by clinical observations to juvenile Alpers–Huttenlocher Syndrome?
AHS is an autosomal-recessive disorder induced by mutations in the POLG gene
However all testing including a full exome reported no known fatal mutations, to include additional testing of the POLG gene. Alina did not suffer from Micromicrocephaly. The only connection Dr Sampaio could make to a genetic cause was the late milestone of walking (all others were easily met). Alinas father also did not start walking until 18 months
The approach taken to managing Alina’s complex symptoms was appropriate and noted that cases like Alina’s involve significant consultation with colleagues, other peers and multidisciplinary team members. In Alina’s case Dr Sampaio consulted with peers from other hospitals, both in Australia and overseas, to inform an evolving treatment plan as her symptoms escalated.
Whilst your views and research are acknowledged, the peer was not of the opinion that Alina’s symptoms were caused by glucose intolerance or viral encephalitis.
The opinion of the medical board is based on a the “buffed” notes by the neurological team. It’s believed that all doctors uphold the Medical Code of Conduct. Dr Sampaio is a proven liar by his own words and team’s comments and actions. Perhaps this opinion is based on an incredibly flawed medical belief that chronic enteroviruses do not exist? (developed and explained further within the diary section – autoimmune disease and chronic viruses appear to be one and the same).
Every MRI of Alina clearly indicates “cannot exclude encephalitis”
.
The parents would be keen to hear an explanation of how nearly 40 visits to the GP and alignment of every symptom in line with a chronic enterovirus, as well as specific advice of this development made by a GP, with these very same “red flags” being relayed to Dr Sampaio in an email with images, were simply ignored and unreported in favour of an unsupported genetic diagnosis
Unsupported “Opinion” and “Likely” do not explain or excuse; medicine is applied science, experience, and reasoned logic. There is a code of conduct that is clearly being ignored
The opinion is a credulous support of an incapable and dishonest doctor. Incidentally, the father requested a pediatric virologist/immunologist to review the hospital notes, anyone but a neurologist. The Medical Board employed an anonymous neurologist.
It was noted that your complaint was the subject of consultation with the Council before any assessment decision was made. The Council did not find any departures in Dr Sampaio’s care and treatment of Alina.
It would appear a doctor who is a proven liar, who is significantly unprepared, and completely out of his depth is in line with the expectations of the Council. The Council seems to afford itself protection of its members and impunity by a self-governed executive privilege.
Based on the numerous online google reviews there would appear to be an almost unanimous opinion that the sole purpose of the HCCC is to find obscure, questionably legal or unreasonable reasons to dismiss any evidence presented by a patient or their family members, and only allowing evidence submitted by the Medical Practitioner themselves, the very same same person who is under investigation.
The investigations against a Doctor made by the HCCC seem to be conducted under “Civil procedures” (i.e. delivery of service), which allows the omission of patient/family provided evidence (such as medical history, audio, video). Whereas the complaint regarding this Doctor is made under the circumstances required for a “criminal investigation” (cause of harm) since the patient died due to clear gross negligence of a Doctor who failed to follow the Medical Code of Conduct
It is unclear if the Medical Board and their assessing Doctor are aware of the additional information, but the standing of the Medical profession certainly benefits from a government backed organization that removes any contest to its “independent investigation”
By failing to enforce the Medical Code of Practice would encourage complacency, disregard of professional obligations, damage to the reputation of colleagues, and of course the high costs of unnecessary treatments
The clinical advice indicates that Dr Sampaio managed this complex clinical case appropriately and there is insufficient basis for further action by the Commission concerning Dr Sampaio.
Clearly there are differing accounts on what was communicated by Dr Sampaio. It is not unusual for the Commission to be faced with two differing versions of events, and in this case the medical records do not assist to definitively determine what in fact occurred. On this basis the review has not found a basis for further action by the Commission in relation to the care and treatment provided by Dr Sampaio-
The Medical Board and HCCC were both sent a link with both audio and video content and making both parties aware that it proved the fabrication of the hospital notes and actions of the doctors. It offered a very different but very accurate record of events, since this information could not be falsified. The Medical Board did not even open the link.
The Medical Board and HCCC now consider this matter closed, with no further appeals.
Twice a coroners enquiry was requested by direct appeal, and was rejected on the grounds that the Medical Board had sufficiently investigated the matter.
The police will not intervene in matters of medical enquiry, finding absurd reasons such as being unable to open a digital file, or being unable confirm the date of a recording (that information being digitally stamped in “properties” of the file itself)
Australia claims to be a champion of Human Rights, to include “Right to Life”, however there is no actual method of raising an investigation
Requests to the local MPs and the Minister for Health only result in direction to another department of enquiry such as the Ombudsman, which has no legal authority over either the Medical Board or HCCC.
In NSW, you can only make recordings if you are protecting your interests. further defined by the Supreme Courts in 2015 as a “genuine fear for your safety” (Groom v Police [2015] SASC 101). You would have to ask when would a situation be more applicable?
Legal advice cannot not act without a coroner’s or medical report, derived of course from the hospital notes, which are buffed and limited. The estimated costs of independent review and legal action cost $100,000+, and unless clarity of the law and situation is confirmed by a Judge they are restricted to the hospital notes too under a “civil investigation”, the Court will not otherwise accept audio and video recordings (that clearly show the true course of events and context).
The law limits an unlawful death investigation to 3 years, however this there is no stature of limitations for either child abuse or homicide. In the opinion of the father, deliberately withholding effective medication with the intent purpose of causing suffering and death is both of these.
In NSW Australia, you would effectively have to wait until laws are revised on use of recording devices before you can report child abuse and homicide
Supplements
The maternal grandfather has diabetes, the grandmother has a number of nerve related conditions; ankylosing spondylitis and hemiplegia, frequent red eye and what is believed to have been bells palsy. Often, she is bed ridden and takes various medications such as vigabatrin.
Alina's mother suffered from deteriorating vision and hypothyroid during pregnancy, which was finally diagnosed as Hashimoto's Disease (an autoimmune disease)
The father suffered initially from alopecia in both calves, two years before Alina was born
https://edm.bioscientifica.com/view/journals/edm/2015/1/EDM14-0084.xml
This progressed to a monthly cycle of testicle pain, lethargy, vertigo for 3-4 days, followed by diarrhea. After 6 years of several pelvic scans, this was suggested as Chronic Pelvic Pain.
Interestingly all family members suffered in sites of immune privilege. Viruses are communicable, and this is more than coincidental.
Medical Science is based on false belief
Introduced in 1983 the RT-PCR replaced Northern Blotting in identifying viruses. An alteration and assumption was applied in 1989 to try and make RT-PCR more accurate by streamlining its operation, consequently more commercially viable too. The true consequence is catastrophic.

Or even…

And hence these papers were accepted as the standard medical interpretation regarding EV infections. Doctors do not believe in chronic (non-polio) enterovirus infections, they are not taught and barely researched.
However, these papers were based on poor laboratory design

The papers above were based on the methodology of the 1989 experiment by Kwok & Higuchi, so are of equal terrible design, that limited the testing to only identify the +ve (antisense genomic viral) stranded enterovirus RNA. Hence the belief that chronic enteroviruses do not exist, or are self resolving.
Consequently for 30 years, medical science has been working blindly, stemmed from these papers by only identifying half the virus types, by only identifying the acute variations. RT-PCR has become the global industry standard for identifying and excluding viruses as a root cause for persistant illness . This error includes the body of works and opinions from the consultants of Immunology and Neurology papers written since.
This is not exclusive to enteroviruses. Other single stranded +RNA viruses in which RT-PCR is used to identify include:
- Nidovirales (Arteriviridae, Coronaviridae, Mesoniviridae, Roniviridae)
- Picornavirales (Dicistroviridae, Iflaviridae, Marnaviridae, Picornaviridae, Secoviridae, Comovirinae, Bacillariornavirus)
- Tymovirales (Alphaflexiviridae, Betaflexiviridae, Gammaflexiviridae, Tymoviridae)
- Astroviridae
- Caliciviridae – includes Norwalk virus
- Flaviviridae – includes Yellow fever virus, West Nile virus, Hepatitis C virus, Dengue fever virus, Zika virus
- Hepeviridae
- Nodaviridae
- Statovirus
- Togaviridae – includes Rubella virus, Ross River virus, Sindbis virus, Chikungunya virus
For the Picornavirales alone, there are 81 non-polio and 3 polio enteroviruses that can cause disease in humans. Of the 81 non-polio types, there are 22 Coxsackie A viruses, 6 Coxsackie B viruses, 28 echoviruses, and 25 other enteroviruses. This does not include the novel enteroviruses such as C105… recently discovered.
You may recognise a virus on this list. COVID of the Coronaviridae family.

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects.html
Symptoms very similar to a Chronic Enterovirus infections:
- Difficulty breathing or shortness of breath
- Tiredness or fatigue
- Symptoms that get worse after physical or mental activities
- Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
- Cough
- Chest or stomach pain
- Headache
- Fast-beating or pounding heart (also known as heart palpitations)
- Joint or muscle pain
- Pins-and-needles feeling
- Diarrhea
- Sleep problems
- Fever
- Dizziness on standing (lightheadedness)
- Rash
- Mood changes
- Change in smell or taste
- Changes in period cycles
The nearly 30 years of this firm belief in the medical community that Chronic Enteroviruses do not exist, they are self resolving. So many “auto-immune” diseases that are explained so more readily by the -ve RNA strand, which on acute infection is present at 100:1 ratio, and from successive generations of replication this is reduced to a demonstrated 1;1 ratio. In particular when you consider the have an affinity to “seed” in areas of immune privilege, where they are not cleared from the host easily, areas like the Central Nervous System.
This includes the Vagus Nerve; the Gut-Brain connection. Now consider all the organs along this nerve; the heart, the lungs, the pancreas, the thyroid.
1% of the global population has type 1 diabetes, 9% have type 2.
Auto-immune diseases are where the medical community believes the body mistakenly attacks itself.
The body is a billion years in design, its does not now seem plausible that it would simple “attack itself” without reason. RT-PCR is 30 year in use, and its being used incorrectly.
We know, very sadly that the virus can be passed vertically (even during gestation, Alina was exhibiting Myoclonic jerks on hearing loud noises, and mum had a troublesome pregnancy, late delivery by C-section) as well as between direct family & partners. From research into this illness, the virus has evolved to produce more chronic RNA variations than anticipated. The actual illness is very mild, exceptionally (as suggested and personally experienced). The damage caused by repetition from an over responding immune system is catastrophic.
And we know from experience with Alina, the triggers are elevated stress and cellular glucose for Enteroviruses EV71.
This mistake, to rapidly prepare samples for diagnosis has become standard medical practice, forming the basis of significant incorrect diagnosis, vaccine design and research and teaching since. It appears that half of immunology is fallacious pathological science, the chronic half.
After trying to calm Alina for about 90 minutes in a stressful situation, the noisy ICU ward at Sydney Children’s Hospital. Noticing she was developing “Ataxia” a video was taken (as noted 5/12/2017). I had tried a lot of tricks, distractions, cuddles, books & toys. She always enjoyed playing with wallets, they had lots of pockets, coins and cards to take out and inspect
After 90 minutes I needed to use the rest room, so left Ali briefly. When I returned, she was significantly different, co-ordinated and acting like her typical self, playing with wallet and taking it apart
I asked the Nurse what had happened? “Oh as soon as you left, she got upset & started to cry. I picked her up and she had a cuddle for a minute, so I put her back down”
Charles Darwin was curious why Humans were the only animal that truly cried when stressed. It would appear in the example that crying offers the benefit of tempering chronic viruses
Alina was particularly stressed in hospital (elevated cortisol?), especially noticeable during the set-up of an EEG – which takes 10 minutes to glue the sensors to your head and during she was not allowed to be touched. The overlap with stress was discussed with the Neurology team
She was at her most relaxed in the environment of her Mum and Dad, Aunts and friends, listening to normal conversations, having her hair played with. Ali had particular friends who just made her laugh uncontrollably and was besotted with; Rahul, & Prachi. (Videos playing with watch and necklace, and being teased with hanging keys) as seen in the videos introducing Alina
Association of Enterovirus and Diabetes
- Lead researcher Dr. Maria Craig, an associate professor at Children’s Hospital at Westmead’s Institute of Endocrinology and Diabetes in Sydney, said, “The finding implies that enterovirus infection is a very important cause of Type 1 diabetes.” Craig noted that the idea that enteroviruses are involved in the development of Type 1 diabetes is not new, but this study makes use of new data that makes the association more likely.
- Dr. Didier Hober, a professor of virology at University Lille in France and author of an accompanying journal editorial, said, “The increased incidence rate of Type 1 diabetes can be explained by a role of environmental factors, especially enteroviruses, like coxsackievirus B.” However, it is unclear whether enteroviruses are involved in all patients or just some, he added. “Enteroviruses could act as inducers of the disease or as accelerators of the progression of the disease. A persistent infection or consecutive infections could play a role,” he said.
http://www.diabetesincontrol.com/cold-viruses-appear-linked-to-type-1-diabetes/
- Dr. Craig has also linked the cause to a chronic variation of Enteroviruses
- EV infection and autoimmunity
- Enterovirus VP1 capsid stained + in pancreatic tissue in a child repeatedly positive for islet cell antibodies
- No inflammatory changes in islets No reduction in beta cells No insulitis, apoptosis
- Findings suggest that (chronic) EV infection contributed to positive islet cell autoantibodies
- Enterovirus infection is likely to be implicated in some cases of type 1 diabetes, and possibly other forms (type 2, fulminant)
- Metabolic abnormalities of diabetes mellitus such as hyperglycemia and hypoglycemia could have a damaging effect on the CNS, which may cause seizure; indeed, in endocrine disorders, seizures could be the result of neuroinflammation, autoimmunity, or of metabolic disturbances
- In particular, anti-glutamic acid decarboxylase antibodies (GAD-Ab) have been associated with T1DM and a large variety of neurological conditions, including epilepsy (43, 44). GAD-Ab have been detected in 80% of patients with new diagnosis of T1DM
From Alina’s first admission to Canterbury Hospital, it was noted a “high stepped gait”
Diabetic Neuropathy and Gait: A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5688977/
Additionally, the images sent to Dr Sampaio of “cheese triangle sized white patches”, or Ash-leaf spots typically associated with Tuberous Sclerosis also are interruptions of the mTOR pathway
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520048/
Entero means from [within] the gut
Hippocrates, the father of medicine is attributed to stating “all disease begins in the gut”