Cerebral Palsy: My journey
8 Min Read
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, OTs 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 medical 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.
Parenting, Hydrocephlus and Charities: Who Can Help
One thing I have learned on my journey is that I need to know as much as possible about Oliver’s condition and its possible impact on him.
When it comes to educating ourselves, there is no shortage of information, and sometimes the problem lies in knowing where to start. I often find charity websites are an amazing source of information on medical conditions, services available, benefits information and how to handle different situations.
Not only did Shine provide someone for me to talk to when Oliver was a baby but they also sent posters and information leaflets to give his nursery and school. As a parent struggling to come to terms with an unfamiliar medical condition, that’s the kind of help which can mean the world. Shine’s website (https://www.shinecharity.org.uk) is full of helpful information to read and download.
As Oliver also has cerebral palsy, other charities have also been excellent sources of information:
Contact a Family https://www.cafamily.org.uk
Brain Injury Group http://www.braininjurygroup.co.uk/
Cerebral Palsy: Educating ourselves
As a medical negligence solicitor at Enable Law, I often work with families who have children with brain injuries. I read expert medical reports every day and pour through medical records to see whether there has been poor care. I know a lot about the brain and brain surgery: I specialise in it.
Sometimes I wonder whether it would help us as parents and those who work with our children to “gen up”. It can only be a good thing to know more about your child’s condition, and in knowing, perhaps we will find new ways to help. For example, in one case a physiotherapy expert recommended disabled riding, so I asked Oliver’s physiotherapist if this would also benefit Oliver. She put me in touch with the local riding school that runs disability riding lessons so Oliver gains the physical benefits of horse riding.
When Oliver has an appointment, I prepare a list of questions because I want clinicians to give me as much medical information as possible, but I recognise this is my personal approach. When I spoke at the neuro-disability network, the audience said that they want parents to ask more questions. So what is my advice? It’s OK to not understand: we are parents not doctors but it is also reasonable to want to understand and to arm yourselves with the information needed to get the very best you can for your child. Feel confident to ask if you need to!
Cerebral Palsy: Getting Support and Letting go
Throughout my son’s care, we have had input from physiotherapists, occupational therapists, nursery, pre-school, orthotics, ophthalmology and more. The professionals have all been fantastic but what has been difficult is the battle to get referrals and the wait for assessments. We’ve also struggled to know what services would help and how to access them.
How as a parent with all the worry and organisation of appointments do you know what to do and when?
When a claim involving a brain injury has settled, families can choose a case manager who coordinates services, therapy and care to enable parents to be parents. It is one of many benefits of successfully pursing a medical negligence claim.
For me, the breakthrough came when Oliver started pre-school. The SENCO, Anita, embraced her role as the lead professional and organised the team around the child (TAC) meetings. She was like a breath of fresh air. No longer did I have to chase contact details and arrange meetings on top of working and being a parent. The relief of having one exhausting thing off my list was immense.
Cerebral Palsy: Our Children’s Potential
My final thought is that all our children have huge potential. I often feel that the pressure on the NHS minimises the impact of Oliver’s disability and does not always recognise his potential. I hope that as his parents we provide those opportunities. Others may not be as lucky as we are in that there may not be the services or facilities locally. Physical disability may be a barrier to accessing services or activities that would help.
We need to be curious and find out what is out there for our children to be the best they can be – there’s a lot to be found, we just need to find a way there. We need to work together with those working with our children and support each other.
Campaigns such as The Secret Life of Us helps raise awareness of children with disabilities but also provides a platform to improve understanding and shares the experiences and knowledge of families across the country.
Everyone has their own journey. I have shared something of mine and I hope my thoughts are helpful. I spend my working life helping families where a child has a brain injury because of an avoidable medical accident. If you think I can help you, please do contact me.