This week we are supporting our colleagues in PenCRU (Peninsula Cerebra Research Unit) in raising awareness of brain injury in children by joining in with #CerebraHeadAware week hosted by UK charity Cerebra.
As a research team we have worked with and supported PenCRU on several projects such as looking at the benefits and costs of peer to peer support for parents of disabled children and the different sleep positioning interventions available for children with cerebral palsy.
I personally was on the periphery of these reviews and whilst all health related research, particularly in respect to children, interests me these had not piqued my more particular interests within this field until a year ago when suddenly these topics became very relevant for me in a personal way.
To add to the support and to continue in raising awareness of brain injury in children I would like to share with you my personal experience in being faced with the knowledge your child has a brain injury.
About two years ago my baby daughter arrived rather unexpectedly via emergency caesarean at 29 weeks and 6 days (about 10 weeks premature). It was traumatic but quick and within five hours of turning up at the hospital (having told our dog I would be back very soon, not to worry etc etc) our baby girl was in the world. I was under general anaesthetic so her father and I didn’t get to meet her for another seven hours and didn’t get to hold her for another nine days. I know in theory how different this must be to a relatively normal or uncomplicated birth but in practice for us it just was what it was, having no other children of our own to compare it to.
That first week in hospital we learned a great deal about our daughter’s health but the most troubling (aside from all the potential risks that were about to face us) was the grade 2 bleed on her brain. It was monitored regularly for any evidence of change or progression but the biggest challenge was that no-one could tell us what it really meant – or could mean for our little girl. There were so many uncertainties and challenges to face I could go on for a long time but the focus today is this – our daughter has a brain injury.
We were fortunate in that the bleed on the brain did not progress or worsen. Our daughter spent seven weeks in hospital receiving fantastic care and she got out three weeks before her due date, she had done so well. Those hospital weeks were busy with many obstacles to get over, so much information to understand, things to get ready at home, my own journey in getting back to full health ready for when she came home and the updating and visiting of family and friends – but the loom of brain injury was always there with the monitoring acting as a reminder of the uncertainty and anxiety we held about it.
After months of being home and settling into family life we all but forgot about the bleed on her brain as we and the services we were in touch with saw no obvious signs of any causes for concern other than those that could be accounted for by her prematurity. At around six months our daughter was due her Bayley’s assessment (a standardised assessment that looks at the key development of cognition, language, social-emotional, motor and adaptive behaviour) she was unwell that day and the timing didn’t suit her routine so we had to reschedule the appointment which wouldn’t then happen until she was one year old.
At her one year assessment we were told that they suspected that our little girl had a form of cerebral palsy. Our happy little (perhaps slightly ignorant or naïve) world crashed. It was difficult to understand what it was and what it meant even though I had worked with children with cerebral palsy on a volunteer basis at a local Riding for the Disabled group (though this did help later having seen what can be achieved). After seeing our paediatrician to talk through the diagnosis some weeks later, that night we cried ourselves to sleep – mourning all we had already planned and expected for our little girl in our heads and replacing them with thoughts of all the challenges we thought she would probably face and the limitations she (or perhaps more we) would have to get used to.
Our daughter has diplegic cerebral palsy. This means she has high tone or stiffness in her leg muscles which in her case cause her legs to turn inwards and make it difficult for her heels to reach the ground. Together this makes it difficult for her to walk independently or with a normal gait. At the time of her diagnosis, and with another year of so much change and development ahead (as for any child), it was impossible to say what the future might hold for her. We were returned to the familiar feelings of uncertainty and anxiety that we had felt when we first learned of her brain injury a year before.
As our little girl progressed into her toddler years slowly reaching her milestones in her own time she showed us just how strong, strong-minded and capable she was. She has always coped with the challenges she is faced with and the various people and hands that test her and prod her. Each time we have to remind ourselves that she knows no different its merely our own experiences and knowledge (or lack of) that cause our anxiety and concern. In this past year she has had so much help and support from physiotherapists, orthotists, paediatricians and her nursery key workers (not to mention our family and friends) that she has surprised us all with her achievements. Where once we believed she may never walk independently or be able to participate in life as we had hoped – in the last few months and weeks she has astounded us with casually taking her first independent steps whilst out walking the dog, increasing her interaction with the world and people around her and showing us her true ‘terrible twos’ nature!
I can’t say we don’t still have our worries every now and then, but they are now and then, not hanging over us like a dark grey cloud. Its exciting to look for new and different experiences and opportunities for her as our eyes have been opened to a side of life we presumed we wouldn’t ever have to think about. The two year Bayley’s assessment looms imminently, together we are positive there won’t be any more nasty surprises (but secretly I am anxious there may be). But what does it matter? Our little girl is who she is and we love her and are determined to support her to get the most out of life as we would with any other child whatever the challenges that face them.
Each case of brain injury is different and people react and cope in different ways – this was just our way so far, it may be different again in a few years time. But, if you know someone living with this challenge in their lives in one way or another, speak to them, ask them questions, don’t make assumptions, show that you care and include them in your life as you would anyone else. They may have been like you once not ever expecting to face such challenges – so be kind and make a difference.
Support and information