Acquired brain injury and your child

The brain is the control centre for the whole body. It controls all of your senses enabling you to see, hear, taste, touch, smell, think and move around. Each area (or lobe) of the brain does different jobs. Here is a general guide to the brain:

• Frontal lobe – planning, self-control, initiation, attention and emotion
• Parietal lobe – touch, pain, temperature, reading and writing, attention to detail
• Temporal lobe – hearing, memory, learning, mood, vision
• Occipital lobe – vision, interpreting shapes, colours
• Cerebellum – balance, speech
• Brain stem – basic life functions, control of movement.

What is a brain injury?

A traumatic brain injury is a sudden unexpected injury to the brain. Each child and each brain injury is different, but some elements are common to most. Quite often, a brain injury occurs when the head is subjected to a large force, which makes the brain move around inside the skull. Sometimes the skull might crack or fracture.

A ‘traumatic’ event is not the only way a child can sustain a brain injury. They can also be caused by tumours, illness and disease. Some of the most common causes of brain injury in Australia are:

• car and bike accidents
• falls
• sporting injuries
• infections around the brain (e.g. meningitis/ encephalitis)
• stroke or bleeds in the brain (cerebrovascular accidents)
• lack of oxygen to the brain (hypoxia) from near- drowning accidents, cardiac causes and prolonged seizures.

The effects of a brain injury vary widely from person to person. It is impossible to say in the beginning exactly what recovery your child will have after an acquired brain injury. What we do know is that the outcome will depend on these factors:

• which part of the brain was injured
• how serious the injury to the brain is
• the age of the child
• pre-existing conditions
• what treatment and rehab the patient receives
• what stage of learning and development had reached prior to the injury.

What does all this mean?

You might hear the doctors mention some medical terms you don’t understand. Ask them to explain things again if you aren’t sure. Here is some terminology to help you understand.

• ABI – acquired brain injury
• Injury – the accident, or trauma
• Damage – the harm caused by the injury
• Haematoma – a blood clot
• Contusion – a bruise
• Haemorrhage – bleeding
• PTA – Post-traumatic amnesia

Types of brain injuries:

• Focal injury – usually caused by a direct blow to the head, causing a skull fracture and bruising to the brain
• Diffuse injury – often the result of a car accident or fall, where there has been shaking of the head. The connections between the nerve cells in the brain get damaged. These injuries can be more widespread, meaning there might be more injuries and complications than a focal injury.

Early on after a head injury

In the early days and weeks, it may or may not be clear what problems the acquired brain injury has caused. It may be difficult for doctors to predict how much a child will recover and how fast. This can be a highly stressful time for the family and you may not take in as much information as usual. It can be helpful to write

everything down (including questions) or have a friend or relative do it for you. If you haven’t already, make some time to meet with one of our social workers. They can provide emotional support to you and your family, as well as help out with some practicalities.

Initially, your child may be in the paediatric intensive care unit (PICU) until the doctors feel they are well enough to be transferred to a ward. Your child may still be in a coma (or appear to be in a deep sleep) at this stage, which can last for minutes, hours, days or longer. It is important to remember that all children are unique, and will recover at different rates.

What to expect

The length of time it takes for a child to recover differs greatly depending on the individual. It can be very stressful sitting by your child’s bed waiting for them to wake. Although the doctors may be very experienced at treating patients like your child, they will not be able to give you an exact answer on how long it will take for your child to recover.

Post-traumatic amnesia

As your child comes out of the coma, they might become more awake. They may also be confused, disoriented and agitated. This phase is known as post-traumatic amnesia and it can last from minutes to months. In this phase, your child may remember things from the past but might not be able to form new memories. This may mean they will keep asking the same questions over and over and might not remember who came to visit them or where they are.

During this period, it is important that your child isn’t over-stimulated. They may not tolerate very much light, noise and activity, so you should limit visitors. Be patient with your child  –  you may need to re-explain things repeatedly. It helps to keep explanations brief and simple. During this time, your child may become upset easily or behave unusually, but this is generally only temporary. Talk to the ward staff as well as the doctors and rehabilitation team about some strategies to help your child through this phase.

Not all children with a brain injury experience post- traumatic amnesia. Usually children who have a traumatic brain injury (rather than an injury cause by a tumour, for example) are those who go on to experience this.

How you can help your child

The most important thing for your child is to make them feel loved and supported, even when in a coma. Always talk and act as if your child can hear you, as we don’t know how much your child can hear and understand when in a coma. Bring in some comforts from home, such as a favourite toy or blanket. Familiar photos may be helpful too, and it also lets the staff

get to know your child and their interests and personality better.

Your child will need a lot of support and attention from you while they recover, so it is important to look after yourself. Take regular breaks, and make sure you get enough sleep and food to keep your energy levels up. Accept offers of help from friends and family for meals and time out from hospital, so you can spend some time with the rest of your family, or simply have some time for yourself.

Sometimes it helps to keep a journal. You can keep track of what’s been happening with your child’s recovery as well as progress. It’s handy also to jot down any questions or concerns you have. That way when the doctors visit you have it all written down, instead of trying to remember them all on the spot.

The rehabiltation team

We understand that this can be a highly stressful and emotional time for you and your family. The rehabilitation team offer a wide variety of specialties

to assist in your child’s recovery. It is a family focused service, so we encourage you to be involved and ask questions as they arise.

Our specialist multidisciplinary team consists of:

• paediatric rehabilitation specialists (doctors)
• rehabilitation nurses
• physiotherapists
• occupational therapists
• speech pathologists
• music therapists
• neuropsychologist
• prosthetists
• allied health assistants
• dieticians
• orthotists
• social workers
• psychologists.

The team will meet you on the ward and will begin planning a rehabilitation therapy program once your child is stable.

About rehabilitation

The goal of rehabilitation is to maximise function, improve the quality of life for your child and help them return to school and their community.

Every Wednesday you will be seen by the rehabilitation specialist and medical team. This is an excellent opportunity to ask any questions you have and provide feedback during the care planning for your child.

Your child will have goals to achieve as part of their rehabilitation program. You and your child will be

included in setting these goals. We have regular family and team meetings to ensure everyone caring for your child knows their progress and the plan for getting your child home and back to school. You know your child better than anyone and we need you to be part of a collaborative partnership with our team. This will be integral in the planning and setting of goals towards maximising your child’s function and ultimately returning to home and family life.

Once you are home, we will link you into local services for any regular support, however our team will continue to care and support your child throughout the years until they are 18 years old or no longer need our service.

Please feel free to ask to speak to anyone from the rehabilitation team if you have questions. Ward staff will be able to contact the team for you if required.

When to seek help

In an emergency, call Triple Zero (000) and ask for an ambulance.

If you're not sure whether to go to an emergency department, call 13 HEALTH (13 43 25 84) and speak to a registered nurse.

References

• Castiglione, M & Johnson, C 1994, Waiting to Clear – Brain Injury: Early Stages of Recovery, Pritchett & Hull Associates, Atlanta.
• Synapse 2014, Parent’s Guide – The Early Days – Fact Sheet, Synapse, Brisbane, viewed 15 April 2014, synapse.org.au
• The Children’s Hospital at Westmead 2013, Westmead, Sydney, viewed 15 April 2014, chw.edu.au

Developed by the Queensland Paediatric Rehabilitation Service, Queensland Children’s Hospital. We acknowledge the input of consumers and carers.

Resource ID: FS062. Reviewed: January 2016.

Disclaimer: This information has been produced by healthcare professionals as a guideline only and is intended to support, not replace, discussion with your child’s doctor or healthcare professionals. Information is updated regularly, so please check you are referring to the most recent version. Seek medical advice, as appropriate, for concerns regarding your child’s health.