What care and treatment will my child receive?
Tony and Kim’s daughter Georgia had a stroke as the result of a cerebral aneurysm when she was [age].
The family had just moved to Sydney, where they didn’t have much in the way of family support.
‘We were given accommodation at the hospital, but over the six weeks we were in intensive care, Kim never left the hospital. So we pretty much lived there the whole time,’ Tony says.
‘We were lucky that our friends supported us, and Kim’s mum was there bringing in food.’
Despite everything that was happening, Tony and Kim kept level heads.
‘We tried to keep calm when working with the medical team, so they could just focus on Georgia,’ Tony says.
‘Kim in particular was a very strong advocate for Georgia, and it’s important that you’re sitting by your child’s bed 24/7, so you notice as things change and give feedback to the staff.’
For example, Tony and Kim had to be assertive when Georgia needed blood drawn for tests.
‘She’s got very fine blood vessels, so taking blood could be difficult. We were quite firm about asking for someone who’s experienced, because it was causing trauma,’ Tony says.
‘So we got a particular nurse to come down who could do it every single time,’ says Kim. ‘Otherwise it just caused so much distress to Georgia.’
The lesson for the couple was that they had to watch out for Georgia’s best interests and make sure she got the care she needed.
‘It’s important not to let someone else take ownership and control,’ Tony says.
Another thing Tony and Kim focused on was getting Georgia into rehab quickly.
‘She needed more therapy than most cases. So within eight weeks of us leaving hospital, she was in speech therapy, occupational therapy, physio and hydro therapy,’ Tony says.
‘We knew about neuroplasticity of the brain, and she was young enough that if you really get onto it as soon as possible, you can do amazing things,’ Kim says.
They also emphasise is the importance of understanding how your child works best with their therapy team, and structuring the journey around your child.
‘For us, we found Georgia responded extremely well to intense therapy. So we did a six-week intensive, which was a lot of work for us as a family, going four days a week for six weeks. But we saw dramatic changes come from that,’ Tony says.
Kim also stresses that finding the right therapists is key.
‘You need to ring them up and ask them what their experience is, whether they’ve worked with a child with a brain injury before. Then the problem we found was getting onto their list, because they were full – but it’s worth waiting for people who are experienced,’ says Kim.
Tony adds that if you feel like the relationship between your child and their therapist is not working, don’t be afraid to go elsewhere and do some sessions with other therapists.
‘You’ve got to find those therapists who are going to work well with you as a family to give your child the best outcomes in the future,’ he says.
A big challenge for the family was Georgia starting school.
Again, working with their care team and being advocates for Georgia were really important.
‘We got the therapists to go to school to work with the teacher, so the teacher is aware,’ says Tony.
‘Georgia had a cognitive psych assessment to identify the areas of need for her at school. The report we got back is tailored towards giving advice to the teachers on how best to support her, even down to where she should sit in the classroom so she’s not easily distracted, and how to approach learning with her.’
Tony and Kim both say that looking into everything that's available for your child is important.
‘For example, children with brain injuries can be afraid of getting involved in sports because they're not going to win. Our society is so focused on winning, but it's looking at it from a different perspective, and how they can be supported based on their disability so they can participate and still get those rewards,’ Tony says.
When asked for advice for other parents, Tony says don't be afraid to ask questions and push for things.
‘If you really, really feel that your child needs additional support, just ask for it and keep pushing,’ Tony says.
‘Work with your teams to identify supports that are available through the hospital and your community to help your child get ready.’
‘You’ve only got a small window of opportunity in order to get your child as good as they possibly can be, so you need to do as much as you can in that time,’ says Kim.
‘Don’t settle. Look for what works best for you.’