Question: – What are the biggest challenges with brain injuries in general?
Most brain injuries occur after a sudden unexpected event which may be an accident or a severe infection or a haemorrhage. The first challenge is to recognise brain injury early and to take immediate action to keep the person alive, followed by treatment in a specialised centre to try and prevent any more brain damage occurring. This is usually over the first 48 – 72 hours. After that, there is quite a long period during which we try to assess the extent of the brain injury and how it has affected the patient. This can be quite difficult because some of the effects are only seen very much later. The patient is often unable to communicate very effectively, so it is quite a challenge to understand how much injury has occurred and even more difficult to estimate how permanent some of these effects will be. When we have a clearer idea of the effects of the brain injury, we can plan a rehabilitation programme for the patient
A serious brain injury in a child is very traumatic for parents and is often accompanied by feelings of guilt about the injury, feelings of anger and frustration about what seems to be delays in diagnosis and treatment of problems, feelings of fear and anxiety about the future and sadness about what has happened to their child. Sometimes it is difficult to accept these feelings while still being worried about their child. It is also very hard to accept that their child after the injury is likely to different from before the injury. Parents have a double challenge of trying to help their child while coming to terms with their personal feelings at the same time.
Question: – How do these differ with children?
Most children are healthy and young bodies recover quicker that older ones. In younger children, the brain is still developing so recovery from injury is quicker and response to rehabilitation is quicker as well. We have been amazed by the recovery of some of our patients and the way they learn to cope with any long term disability.
Question: – What seems to be the biggest frustration for parents?
After the trauma of the first few days following the injury there is a long period when doctors are not able to say definitely how much brain injury has occurred and what the future will be like. This means that parents are left not knowing what to expect and what they need to do to help their child. There is also quite a lot of delay in getting all the support services organised to help the patient to start rehabilitation to begin the process of safe discharge home. Parents often feel very anxious that the time lost while getting organised may affect the outcome for their child.
Question: – What advice do you offer parents?
A serious brain injury is a major physical trauma to the child and a major emotional trauma to the family. Both need time and effort to deal with the consequences of the trauma. Although the health service provides excellent emergency care, rehabilitation and long term management for children is not very good in many areas of the country. Parents can help by looking up resources like Brainstars to that they know what to expect and where to access some of the help available. It is my dream that we will have proper brain injury rehabilitation facilities for all children who have a brain injury
Question: – What support options can parents expect to receive when they leave PICU?
This can be quite variable. Some hospitals have access to formal head injury rehabilitation services but most do not. Parents should be offered help and advice on how to access services like nutrition, physiotherapy, occupational therapy, pain management, spasticity management and seizure management. Depending on the effects of the injury, the child may need a wheelchair, and the home may need alterations. A car or van with modifications may be necessary for transportation. Families may need support from social services and the child’s medical and developmental progress will need to be followed up by specialists. The challenge for most families is to understand what help their child needs and where to go to get this help
Question: – What changes have you seen in the management of brain injury throughout your career?
I think changes in how we manage the immediate injury and how we try to prevent further injury has transformed the outcome of children with brain injury. This is particularly so when the injury is caused by head trauma or bleeding or infection in part of the brain. We also start rehabilitation earlier and use specialists to carry out these programs. Where there has been permanent injury, we can offer a lot more in terms of mobility aids and other devices to assist the child. This has resulted in some remarkable examples of recovery to near normal function in children who have had major traumatic brain injury in particular so much so that I now find it difficult to predict what the child will be like a year or two after the injury. I think we can still do a lot more rehabilitation after a brain injury so that our patients can achieve the best outcome possible for them