Brain Injury – Our Story

This is our story. We are an average couple.  Our son LB was born as a neurotypical child. He hit all of his early development goals up until the age of 7 months.  Then one day, he developed a respiratory illness and suffered a brain injury that changed our lives forever. 

That is how our journey began.

LB suffered a prolonged cardiac arrest during medical intervention. After spending 10 days in PICU, the doctors updated us. LB had suffered a catastrophic brain injury. They said he probably wouldn’t make it, and that we should say goodbye. Miraculously, and against all the odds, LB found a way to fight through. 

The challenges we face as a family come from all aspects of life. We used to be primarily concerned with what house/area we needed to move to. We were focussed on catchment areas for the best schools. 

Suddenly, we found ourselves on a parallel time line with alternative priorities. We were learning to draw up medicines. Testing and managing an NG (nasal-gastric) tube. Dealing with our child’s sleeping difficulties, attending multiple medical appointments and managing increased financial pressures.  We also found our marriage and relationship coming under huge pressure while we learned how to cope with the ever changing situation. 

When the brain injury happened, LB was only 7 months old. He was initially on an end of life (generally for the last 12 months of life) pathway.  LB gradually moved onto a palliative pathway. This made him as comfortable as possible. One big challenge we faced is that a number of supportive services commenced from at least 2 years old. An example of this is the Disability Living Allowance motability component, which starts from 3 years old.  Somehow, we would have to navigate the gap. This seemed odd given that the vast majority of those diagnosed with cerebral palsy are aged 2 years and below. 

Then one day, once things had started to settle down a bit, it occurred to us that it would be helpful to write all these things down. This is in the hope that maybe they could help someone else out there. 

Hopefully, this blog will help you one way or another, if for nothing else just in recognising that you are not alone. We and others do understand some of the challenges and struggles you may face along your own respective journeys.