Cerebral Palsy: My journey
Next week our corporate partners at Shine go yellow to celebrate Spina Bifida and Hydrocephalus Week. In readiness, Katherine Pearce from our Taunton office revisits the first of her two part story about having a child with cerebral palsy and hydrocephalus:
My 5 year old, Oliver, has cerebral palsy and hydrocephalus. A few weeks ago I was asked to speak at the south west paediatric network for neuro-disability to an audience consisting largely of physiotherapists, Occupational Therapists and consultant paediatricians.
They are working together to develop a care pathway for children with cerebral palsy and other neuro-disabilities.
I spoke about our journey.
At 12 weeks old, Oliver was diagnosed with hydrocephalus. He had a procedure called endoscopic third ventriculostomy, which involves a hole being made in the ventricle of the brain to try and bypass the block in the system. This worked for a few weeks. Then at 4 ½ months old, he had another blockage in his brain. He needed emergency surgery to place a shunt. It was at this stage that SHINE – a charity providing support for those with hydrocephalus and spina bifida – came to my rescue. I was really struggling to cope with the constant worry that the shunt would fail or become infected. I was a mess. Oliver couldn’t tell me whether he was crying because he was hungry, tired or had a headache. I spoke at length to a support worker who talked me through the symptoms, and she reassured me that it was ok to ring the hospital every other day to check as they were used to it.
Hemiplegia and Cerebral Palsy
A month later, I noticed Oliver was “curling” his left hand and left foot. I was told he could not see a physiotherapist unless there was a problem – I said we would not know whether there was a problem without the referral! Eventually a paediatrician made the referral, and Oliver saw a physiotherapist within a few weeks. Nine months later the physiotherapist diagnosed left hemiplegia (a type of cerebral palsy affecting only the left hand side of his body).
Milestones on the Way
It was hard watching my friends’ children meet their milestones with Oliver falling behind but he did sit up and commando crawl before he walked at 17 months old. I can only imagine how difficult it would be to watch your child completely miss those development steps. Oliver is fantastic – he is full of character and spirit. He struggles with balance, coordination and fine motor skills. He has an ankle foot orthosis (which he hates) but from the outside you wouldn’t really know he has cerebral palsy. It is a hidden disability, and that is something which brings its own set of challenges. Friends would joke that we were lazy parents because we didn’t try to potty train him until he was 3 ½ – they couldn’t understand that he didn’t have the physical ability to coordinate sitting down so low.
Oliver turned 5 in March. One thing we have tried to do as parents is to not treat him any differently – we have challenged him and we don’t let his disability stop him from doing anything he wants to do. As a result he has determination and character. He wants to scoot to school like his friends but he can’t maintain his balance but he has just learnt to peddle a bike – Isla bikes need a big thank you for making such lightweight frames!
What I have learned as a clinical negligence solicitor
When I was asked to present, I reflected on what my family have learned throughout our journey – what worked well and what could be done differently? What could this audience learn from my experience? Why am I writing this now?
I am a medical negligence solicitor and I work with many families who face the same battles and talk about the same barriers that we have been through, or are yet to reach. Oliver’s disability was not a result of negligence but I hope that by reflecting on and sharing some of the many things we have learnt on our journey, others will know they are not alone in their experiences and perhaps we can think about how to make changes. Dream big.
My Next Blog…
We are lucky – many children with a brain injury would not be able to achieve what Oliver has and caring for a child with cerebral palsy can be very demanding. Next time I will reflect on some other issues which I hope are relevant to other families in similar situations and I would love to know that our experience has helped others.