Professor Dinah Reddihough (paediatrician, Royal Children’s Hospital Melbourne): Cerebral palsy is a disorder of movement and posture due to a problem that has affected the brain. It’s an umbrella term so there’s all grades of severity. And no one child with cerebral palsy is the same. Each child is very different.
Professor Nadia Badawi (Macquarie Group Foundation Professor of Cerebral Palsy, Cerebral Palsy Alliance): It’s the most common physical disability of childhood, affecting between 1 in 400 and 1 in 500 children. So we say that every 15 hours a child is born with cerebral palsy in Australia.
Nicole (mother of 2 children, 1 with cerebral palsy): Will was diagnosed with cerebral palsy when he was three days old. So this journey for us, for my family, has been right from the beginning. Will suffered a hypoxic brain injury at birth, which means he had reduced oxygen and blood flow to his brain during birth, which affected several areas of his brain. And that was picked up on the MRI at three days.
Nadia: Cerebral palsy is a condition that affects the development of the brain and it’s caused by damage at some time, usually before the baby is born. In some rare cases it happens during delivery and there is still a proportion that occurs following the birth.
Dinah: The known causes: it can be something early in pregnancy, such as when the brain is developing. There may be a malformation or an abnormality in the way in which the brain develops. The mother may have a virus such as Cytomegalovirus or rubella that crosses to the baby. There can be problems at birth, secondary to a difficult delivery. Or there can be problems even during the first year or two of life, such as a severe brain infection or a near-drowning episode.
Deanne (mother of 2 children, 1 with cerebral palsy): From the time he was born I knew straight away something wasn’t right with him. If we laid him down on the floor at three months of age, he couldn’t move his arms up to grab or reach, for the little things you put over them, with the little things. All he could do was just stick his legs out and that was it. He couldn’t move his head off the floor, he couldn’t roll over, he couldn’t hold a bottle, and I just knew, as a mum, something wasn’t right.
Mike (father of 2 children, 1 with cerebral palsy): The main way that we thought that Kennan wasn’t developing was the fact that he had difficulty rolling. He also had… we expected him to be able to start to stand, even supported standing, and he couldn’t do that. Everything just seemed to be a little bit slower. We knew he was a premature baby so we thought premature babies take longer to develop, so that’s what we thought. However, when we took him to a specialist at the Royal Children’s Hospital, they looked closely and they gave us a diagnosis of cerebral palsy.
Deanne: I looked it up on the internet, and I knew it wasn’t as severe as other forms. But then I came across the ataxic, and it was just him to a T. Everything, every symptom, I just thought ‘Oh my gosh,’ you know? So I went back to the paediatric neurologist and I said ‘Look, I’ve had just about enough. It’s been three, nearly four years. We’ve been to intervention centres, assessment centres, this centre, that centre. No one has been able to tell me anything.’ I just remember looking at him and saying ‘Does my child have ataxic cerebral palsy?’ And he just looked at me and said ‘Yes, I think he does.’
Nadia: We classify cerebral palsy in lots of different ways. It can be classified according to its severity, from grade 5, being the most severe, to grade zero, which is the mildest. Now, another way of describing it is to describe it according to the region of the body that is affected. So parents will hear the term quadriplegia, meaning all four limbs are affected, hemiplegia is when half the body is affected – the right or the left. It could be a diplegia – that means that the lower limbs are particularly targeted, though often the upper limbs are affected as well. We call most cerebral palsy; about 85 % will be what we call the spastic type. And that’s where the [muscle] tone is very high. Some types have ataxia, and that’s where their movement can be quite uncontrolled, and there is a hypertonic type, where the tone is low.
Nicole: In Will’s case, his cerebral palsy affects his entire body. However he predominantly has low muscle tone, unlike a lot of people who have cerebral palsy have higher muscle tone. So they get a lot of muscle contractions and they can be quite fixed in position. Will’s the opposite end of the spectrum, so he has the potential to have a lot more movement, but he needs support to do so.
Mike: Kennan has diplegia cerebral palsy, so that is associated with his lower limbs, particularly his calves and hamstrings. And all the treatment and work we do from a physical point of view is to work on making that muscle tone not as tight. Reducing the muscle tone.
Nicole: You know I often think back to when we got his diagnosis and we were told he’ll never walk and he’ll never talk. And that’s such a black and white, clear-cut diagnosis in the beginning, yet what I can see now is he may not talk as we talk, and he may not walk as we walk, but Will and every child like him has their variation on how they do things. So, often I get asked ‘Can he talk?’ And I’ll say ‘Well he can talk but he uses his hands.’ And he makes sounds, but it just doesn’t sound like us. And it’s the same with his walking. He can kind of walk, if he’s helped, but that’s enough for him. So, he’s got a lot of physical challenges, and they’ll always be there. But we just find workarounds to try and give him the best opportunity to be involved in the world around him.
Nadia: While the future is bright and hopeful for most children with cerebral palsy, for the children who have severe cerebral palsy we must acknowledge that it is a very difficult journey.