In this episode of Brain Injury Bites, Brooke Trotter and Ashwini Kamath continue their moving and honest conversation with Emma Pilling, whose son Charlie was diagnosed with hydrocephalus and an acquired brain injury as a baby. Now an advocate and fundraiser, Emma shares how diagnosis is only the beginning of a long journey, one shaped by learning, grief, advocacy and extraordinary resilience.

Emma opens up about finding support through the Child Brain Injury Trust, building community through her blog, and the practical changes that make everyday life more accessible. She reflects on the emotional weight of parenting a child with complex needs, and the importance of acceptance, friendship and fighting for the support your child deserves.

They explore:

What real support from charities and professionals can look like
How to advocate for your child in education, healthcare and public spaces
The impact of invisible disability and why awareness still matters
Parenting without comparisons — letting go of milestones and expectations
Finding strength in shared experience and helping others through it
Why peace comes not from giving up, but from being supported to carry on

Whether you are a parent, a professional or simply someone seeking a better understanding of life after childhood brain injury, this episode offers honesty, compassion and the belief that every child deserves more than just a life; they deserve a full one.

Helpful links:

For a transcript, follow the link below:

Episode Transcript

To keep up to date with our podcast, follow us on our social media accounts:

Community Compass app!

Brain Injury Bites is now part of the Community Compass app! Download now and take the first step toward reclaiming your best life - because you’re not alone in this journey.

Notice:

Information and other content provided in this Podcast should not be taken as providing medical advice or recommendations. Please always consult your doctor or treating team for medical advice.

Parenting After Pediatric Brain Injury: Life After Diagnosis – with Emma Pilling