“I Quickly Realised My New Role as a Parent”

My name is Emily, I am the mother of three children: Abbie – 19; Sam – 17; and Max – 15. Sam sustained a severe Traumatic Brain Injury (TBI) in a dirt bike accident on 8 July 2017 – a month before his 10th birthday. Sam and Max were riding a dirt bike in Nowra with their Dad. Riding with his brother and his father, Sam came off his bike going over a jump, landing directly on his head before falling unconsciously (he was wearing full protective gear).

He was airlifted to Wollongong Hospital where a CT scan revealed bilateral haemorrhagic contusions in his temporal lobes. He was airlifted again to Sydney Children’s Hospital for neurosurgical assessment. This naturally set our expectations that Sydney Children’s Hospital was the best place for Sam to receive expert care. Upon admission, he was initially diagnosed with a “mild complicated” TBI. (It wasn’t until a year later – after a neuropsychological assessment at the Children’s Hospital at Westmead – that his injury was re-categorised as “severe”.)

Sam was transferred from the Emergency Department at   and placed beside the busy nurses’ station in a four-patient room. He was extremely fatigued and became easily agitated and aggressive at being woken so frequently for observation. Most distressing was the duress of intense screaming each time his blood pressure was taken on his left arm, or when being repositioned in his bed. We were advised that an x-ray had been taken of his left elbow at Wollongong Hospital and there was no abnormality. However, two days later – after persistent screaming, increased pain and swelling – a full arm x-ray revealed a fractured humerus.

This was a critical turning point for me.

I quickly realised my new role as a parent was not just to sit beside my son waiting on his care at the hands of medical professionals, but rather to proactively represent his condition and needs to in order to effect his recovery.

Sam was extremely distressed after four days of continued interrupted sleep throughout the day and night, increasing his level of fatigue, frustration, agitation, and aggression. After repeated requests, on the fifth day following his accident, he was moved to a two-patient room. The following day, Sam was able to get in and out of bed and walk, but required monitoring due to impulsive movements placing him at risk of a fall. He was also screaming and crying most of the time, and required constant supervision. The ward also had to be closed as he became a flight risk, springing out of bed confused, and stumbling through the ward opening every door, screaming “help, somebody take me back to the real world!”.

It was also the day that Sam was assessed for Post Traumatic Amnesia (PTA). He was given quick instructions – for example: “remember this sentence, I’m going to ask you to say it back to me in a few minutes”, “stand on your right leg” – and sharp questions – “what did you eat for breakfast?”, “who visited you today?” etc. The whole assessment was done in five to ten minutes. The conclusion? Sam was doing well, didn’t have PTA, and could go home tomorrow.

This was confusing because, among other things, I wasn’t confident I could care for Sam at home.

He was still agitated and aggressive, screaming out at nurses and family. I asked how it was thought that he was ready to be discharged. I was told the PTA assessment was quite complex to explain.

I asked why Sam’s answers to questions in the assessment hadn’t been checked with me. And, while I don’t claim to have any training in brain injury, I do have some knowledge of the way that memory functions – that not all memories are acquired the same way; for example, to recall a sentence is accessing semantic memory, whereas episodic memory is accessed for remembering what he ate for breakfast, or who visited today, both of he hadn’t remembered.

After I insisted a senior clinician review the assessment, it was determined that it had been inaccurate and that Sam did present with PTA and was not fit for discharge.

I also enquired concerning my repeated requests for resources and information to understand my son’s injury, what it meant for him and our family, and how to best care for him?

I was given booklets funded by the (then) Motor Accidents Authority of New South Wales – the statutory corporation that regulated the NSW Motor Accidents Scheme, the Compulsory Third Party (CTP) personal injury insurance scheme for motor vehicles registered in New South Wales. These resources were excellent. They contained all the information I was seeking. However, the text outlined that a child would be transferred to “Paediatric Intensive Care Unit” (PICU) from the Emergency Department, to ensure they would not become overstimulated as they may not cope with too much noise or activity.

This was discouraging: why wasn’t Sam receiving the same care as outlined in the Hospital’s own literature? I wondered how many other families have had this same experience and simply trusted the “professionals” to provide their children with the right care.

By the day seven, we were thankfully in a private room receiving the appropriate care and attention, and Sam was finally able to sleep – the exception being when the care team did their daily rounds with loud voices, opening the blinds, turning the lights and television on, waking Sam up, as if they had no knowledge of the kind of low stimuli environment required by patients in PTA.

It was also encouraging to learn that a neuropsychological assessment would be conducted six weeks post-discharge (Sam had received a psychological assessment two years prior to his injury. Having a pre- and post-injury comparison would, I thought, serve as a great advantage to his rehabilitation – so that everyone could learn the areas of impaired function to concentrate on.)

Sam was discharged from Sydney Children’s Hospital thirteen days after his injury, despite – it appeared to me – never having emerged from PTA.

He was unable to return to school due to heightened fatigue, cognitive impairment, emotional dysregulation and anxiety.

I felt compelled to resign from my job and commence home-schooling Sam. Without an income it was also necessary to sell our home and reduce our cost of living. Sam’s younger brother, Max, was only seven at the time, and was suffering significantly from having been left in Nowra for twenty-four hours after Sam was airlifted to hospital, and we were yet to face many more life changes.

My other children accepted the challenge that we would do this together, taking a team approach to achieve the best outcome for Sam. So, we decided to home-school as a family.

Daily life was extremely traumatising.We were unprepared for multiple daily meltdowns of screaming and shouting lasting up to several hours at a time

Sam’s impaired communication skills, his sensory overload amongst various other traits we learnt were common to people who’ve sustained a TBI.

In desperation, I phoned Sydney Children’s Hospital multiple times only to be advised that Sam’s behaviour was quite unusual and we were referred to a child psychiatrist. The psychiatrist didn’t have any experience with brain injury but described Sam’s behaviour as “weird”. And prescribed him an antipsychotic. I was not in favour of the psychiatrist’s approach, and advised we would seek another opinion.

To my horror, a few months later – two days after Christmas – the NSW Department of Communities and Justice attended my home to conduct an investigation for potential “out of home care placement” of my three children, due to a report from this psychiatrist suggesting a breach of corporal punishment legislation demonstrated in our home [Note: In NSW doctors have mandatory reporting requirements re possible child abuse and neglect] .

I had disclosed there were times when the only way to help Sam reset during a violent episode was to curb the behaviour with a smack on the bottom. Predictably these allegations [child abuse and neglect]] were unfounded and the investigation closed. However nothing can compensate for the two weeks of undue stress and trauma inflicted on our family; along with the deliberate misuse of a government service by a licensed professional, designed to protect families.

Sam’s promised neuropsychological assessment was delayed. To avoid losing any more invaluable recovery time, we requested a transfer to the Brain Injury Service at The Children’s Hospital at Westmead.

The Service provided us with a series of emotional regulation therapy sessions to attend and conducted the necessary post-injury assessments. We finally received the long overdue neuropsychological assessment report – one year post-injury.

The assessment demonstrated that Sam’s TBI was much more serious than initially diagnosed, and re-categorised as “severe”. Our request for a paediatrician specialising in brain injury was unable to be met, and we were instead connected with an Attention Deficit Hyperactivity Disorder (ADHD) behavioural paediatrician, as Sam was exhibiting behaviours similar to children with the Disorder.

The critical error in this and of detrimental concern for those living with severe TBI and their families: without the availability of specialists in childhood brain injury, while the behaviour may appear similar to those children with ADHD, the treatment does not achieve the same outcome in an injured brain.

Sadly, as a parent my own observation of the effect on Sam was clearly not credible enough to challenge, let alone override, treatment approaches overdetermined by a diagnosis.

It wasn’t until I independently researched published scholarly articles and academic journals on psychopharmacologic approaches after TBI, and took the findings with me to each relevant doctor that the necessary considerations were adopted.

In 2021, four years post-injury, our wonderful General Practitioner set us on the right path, referring us to a paediatric neurologist who introduced the concept of a multidisciplinary team and connected us with a paediatric neuropsychiatrist, enabling a team to be put together. Unfortunately this multidisciplinary approach could only be utilised for one year, enabling Sam’s return to school, but due to fatigue could not be sustained along with attending school.

What are the implications of losing four years of recovery for brain injury?

It is widely endorsed in society regardless of industry that “early intervention typically produces a better outcome”. The school curriculum is developed on the basis that there are critical periods and developmental windows within which the developing brain can acquire certain skills and concepts. Failure to learn and acquire these – whether academic, self-regulatory, or social – can close the possibility of ever acquiring them in the future. Hence the phrase commonly used in association with neuroplasticity: “if you don’t use it, you lose it”. To lose this time in recovery from brain injury is professional negligence.

Sam returned to school for Year 9 in 2022.

However, due to his impaired judgement – common with damage to the frontal lobes of the brain – it wasn’t long before he became interested in vaping, which directly impacted his brain, and every facet of his TBI was further exacerbated. Every meltdown became an episode of perseverant rage and/or violence, any previous method of regulation or diffusion used was ineffective.

Our local police, paramedics and women’s supports are always helpful.

However, because Sam has a TBI and is being managed pharmacologically by a psychiatrist, their involvement is limited to restoring calm. We’ve found no help available to prevent the inevitable recurrences. “There seems to be a hole in the system concerning you” is the common response. Of greater worry is being contacted by the NSW Department of Communities and Justice out of their concern for the protection of my two other children!

My desperate response is “what about Sam? What support is available for him now, in order to prevent him from being arrested for the same behaviour once he turns 18? What about me?

What support is available to protect parents from domestic violence from their children?” Each question met with the same response; “yes, you’re right. There currently isn’t support available. I’m sorry, there seems to be a hole in the system concerning you”.

According to the Australian Bureau of Statistics at least 350,000 of the population under the age of 25 have a brain injury. There is a significant number of families in this country experiencing this same isolating trauma.

There was global opposition to the social restrictions imposed on daily life through the COVID pandemic. Sadly, it had zero impact on our family, that is everyday life with brain injury. Statistics also suggest that as many as 80% of adult prisoners in the criminal justice system report sustaining one or more brain injuries over the course of their life. Just our family’s experience identifies a great and urgent unmet need for intervention and support. And, with such intervention and support, the potential to divert a significant number of children and young people from the criminal justice system.

This article serves as a plea to reform our nation’s response to brain injury and the way families are supported. Whilst parents should always be expected to do their part for their children, families can’t survive unless every person and profession does their part without exception, as a minimum requirement.