starSupport and Information for those affected by brain injuries

An acquired brain injury is any injury to the brain that has occurred since birth. There are different types of Brain injuries which includes:

  • Traumautic brain injury (TBI): when the head receives a bang or a jolt caused by impact from an accident
  • Acquired Brain Injury (ABI): when the brain suffers due to a stroke, lack of oxygen (Anoxic/Hypoxic), or a disease that spreads to the brain such as Meningitis, Encephalitis etc.

These injuries can affect some or all parts of the brain which ultimately will have an effect on daily bodily functions, such as movement, speech, thought processing such as empathy and comprehension. For further information please visit Headway. No one brain injury is the same and it can effect different people in many different ways. In terms of outcome there is no way of telling how well you will recover from a brain injury, some people progress better than others. The lack of knowing the ultimate conclusion is by far the hardest part of enduring a brain injury.

In terms of childrens outcome there are two schools of thought. Some believe that the younger the child the better the chance of recovery as their brain is still developing and can take advantage of Neuroplasticity – the belief that the brain is not a static organ and that it constantly develops through life. It is therefore logical to think that the younger the victim the more chance they have of a better recovery as their brains are still developing.

In contrast others believe that the early brain injuries may have a profound impact on a childs development who may not have established basic skills such as speech. Either way there no definitive conclusion on this so it is critical that we focus on the relevance of rehabilitation< > and long term family support.

starIntensive Care

Most people’s journey will begin in Peadiatric Intensive Care Unit (PICU) where the highest level of medical care is provided. It allows intensive care nursing and monitoring on things such as heart rate, breathing and blood pressure continuously. Once the child is stable and their needs can be met outside of PICU they will be moved to The Children’s Ward.

starThe Children’s Ward

It can be daunting and scary when you get here and suddenly the ratio of medical staff to each child is much lower. Here your child will begin their real journey to recovery. The aim is to find a balance of medication that will suit your child’s problems – remember every brain injury is different and children will respond differently to each drug.

This part of the journey can be extremely frustrating as it can be a bit of a guessing game that takes forever. Every drug needs to be introduced slowly so it takes time to know if it will work, if it’s unsuccessful then it needs to be withdrawn slowly before the next one can be introduced. There are many doctors to deal with and things can become very repetitive, so it is important for the parents to try to keep notes on what is happening with medications.

You will be the ones with your child 24/7 and will be the best judge of whether the drug is working or not. To help with this we created charts that tracked drugs and outcomes and comfort levels this allowed us to really feedback to the doctors accurately and was a godsend after many sleepless nights. Our son suffered terribly from dystonic posturing after his injury so to help maintain a healthy posture we introduced little props such as little hand toys from IKEA to ease his clenched hands and bolster cushions to put under his knees and promote a bend in his legs – a cheap and effective option.

We were also told that he may not be able to eat by mouth again so after a safe swallow test known medically as a videoflouroscopy we gave him small spoonfuls of puree baby food, we found Ella’s Kitchen pouches work really well, many supermarkets now do their own brand of pouch purees.

starRehabilitation for brain disorders and injuries

According to the Oxford English dictionary Rehabilitation is 1. To restore to health or normal life by training and therapy. The hospital should provide your child with Physiotherapy, Occupational Therapy and Speech and Language therapy. It is important to start all of these therapies as soon as possible.

The Childrens Ward is great for initial recovery but once your child is stable the need for intensive Rehabilitaion becomes apparent. It is astonishing that there is such limited Rehabilitation centers in the UK. The leading pediatric rehabilitation unit in the UK is The Children’s Trust in Tadworth, Surrey.

Places are limited but in many cases your local CCG will provide funding for this option. You will need to justify why your child needs this level of intensive therapy and take into consideration the logisitics of living at a unti like this. We have two other children so logistically is was difficult but definitely worth it! It not only helped Jago but also provided us with an opportunity to slowly come to terms with his limitations and its effect on our lives going forward.

It gave us the space we needed to plan for the future and organise logistics for Jago at home including the type of Care Package we required. You can ask your Consultant to refer you to The Childrens Trust or apply through your local CCG (Clinical Commissioning Group) to fund a place for your child at a Rehabilitation unit.