Alina’s dad believes a number of very serious failures were made during her care and treatment, that ultimately led to misdiagnosis and unnecessary pain and death. These concerns are not just the result of anger or a need to assign blame as part of the grieving process, they are carefully considered, educated and thoroughly researched, and efforts are made to explain them clearly.
Viral explanation
Alina’s early symptoms fitted with those of viral infections. Alina had been to the GP on at least 15 occasions before the first seizure, for a variety of complaints including conjunctivitis; Hand, Foot, and Mouth Disease (HFMD); rashes; vomiting; frequent tonsillitis, wheeze, cough, croup and stridor. Full details of the early symptoms are in the parent’s diary here.
Every symptom was very easily recognised and unmistakably viral, and she even tested positive to an entero/rhinovirus swab. GPs and hospital staff all independently agreed she “just had a mild virus” and “it would pass within a week”. It never did, it always returned.
Despite this, after first being admitted to hospital for a seizure and her parents giving clinical staff a very detailed history of her illness, the hospital failed to take the viral explanation seriously, did not see any significance in the seizure occurring shortly after her MMR vaccine; failed to check GPs’ notes at all; failed to communicate the history to other consultants that were brought in to advise on her case: and became obsessed with explaining the illness as being genetic, even manipulating results and observations to fit with their hypothesis.
The Neurologists refuse to accept notes from outside the hospital, which included confirming the parents explanation of events, confirmed from the GPs notes
or as they responded themselves
The policy of SCH regarding communications
”SCH states that it is not usual practice to obtain medical records from GPs, and often, the information required is available in the letters from the GP to the SCH. Oral history from the patient is obtained from the patient’s family upon initial assessment, and relevant information is documented in the medical records. The emails from family are considered and referred to the medical records where clinically relevant”.
Flawed genetic science
The idea that Alina’s illness was genetic was flawed from the outset, a detailed scientific explanation of this can be found here.
Importance of sugar
During her care, Alina’s parents raised concerns on many occasions that she may have a sensitivity to sugar, like her mother, and that her diet and treatment needed to be adjusted to take that into account, as it was negatively affecting her well-being. They had to go to great lengths to get hospital staff to stick to a ketogenic diet, even though it was clearly beneficial, as detailed in the parent’s diary here.
The effects of sugar confused matters when investigating and treating her illness, and undoubtedly compounded errors that led to the misdiagnosis. It is worth noting that a glucose IV drip is standard use in such admissions; and as explained within the diary, glucose proliferates the replication of Enteroviruses
Inappropriate dosing
In desperation and despite the concerns of her parents, hospital staff administered doses of medication that were far higher than would usually be given to a child of Alina’s age and weight, such as Vigabatrin. Her lead neurologist even commented in retrospect that he feared he had given her too much medicine.
The effect of this overdosing by medical staff further exacerbated her treatment and misdiagnosis, and very likely accelerated her death.
In sharp contrast, when Alina was clearly in pain, the staff would not give her enough pain relief, most likely an over compensation for the earlier overdosing.
Lack of compassion and professionalism
Of course medical staff get emotional and can make mistakes like anyone else, but on a number of occasions their lack of compassion and professionalism fell well outside what is expected under the Australian Medical Code of Conduct, as detailed in dad’s comments on the hospital responses here.
Their failure to keep accurate or complete notes, or provide them in a timely manner upon request, also made analysing what went wrong much more difficult.
No recourse
Alina’s dad has spent 5 long, heart-wrenching years researching and detailing his arguments about the failures and trying to find recourse, but has been stonewalled in every direction he has turned.
Hospital and health authority complaint procedures were entirely inadequate and, in their responses here, they closed rank and denied all culpability, displaying self-interest to protect colleagues. The poor note-taking mentioned above made it even more difficult for them to analyse objectively what had happened and parents’ audio recordings of conversations with medical staff were disregarded.
Complaints to police and the coroner were simply met with explanations that it was not a matter under their jurisdiction and, again, parents’ audio recordings of conversations with medical staff were deemed inadmissible.
To date, lawyers have been uninterested too because the overall cost of would exceed $120,000. With this, the only information that is considered in a Court is the Hospital notes, which the father can prove are a deliberate misdirection of events, withholding of information, lies and fabrication of diagnosis. Now all of this information has been put together in a more digestible website format, Alina’s dad hopes this will change.