A complex girl with an acquired brain injury
Meg* is a girl that we have supported since June 2015. At two days old, Meg* had a cardiac arrest and needed to be resuscitated by her Dad for an extended period of time. This resulted in a brain injury due to lack of oxygen which led to a diagnosis of Cerebral Palsy and Epilepsy. Meg* has a gastrostomy and requires regular passive limb physiotherapy. Due to the on-going changes in her condition and her increasing body weight, her seizures are unpredictable and problematic which requires intense emergency rescue medication.
Meg’s* mum admitted to feeling trapped and like a prisoner in her own home. She had to give up work and adapt to a completely different lifestyle than she was expecting due to the disability of her only child.
Meg* was mum’s focus 100% of the time which created anxieties when Laura, the Paediatric Consultant, realised that she needed some support. She also wanted to maintain as much normality and choice for Meg* as possible.
Laura began to research the benefits of a blended diet via Meg’s* gastrostomy. This created its own issues around processes that Voyage Specialist Healthcare would need to adhere to. In relation to managing this new regime, this was the first time Voyage Specialist Healthcare had been asked to be involved with a blended diet. Overcoming mum’s anxieties and building trust with her team.
How did we help
Following a review with us, consultant and parents, we eventually gained agreement regarding the process of feeding Meg* which all parties approved. From there, we developed a policy and procedure to to support her blended diet. Laura also agreed to become a voice in this matter with other families if requested. We have worked very closely with Mum and Dad to ensure we involve them in all decisions regarding Meg’s* support.
We have a regular team of seven staff who Mum and Dad are confident with. Mum has agreed to an increase Meg’s* support hours from 15 – 50 per week. Meg* also now attends school with us supporting her and Mum is also looking at a ketogenic diet over the coming months.
*Some of the details have been changed for confidentiality reasons.