In this episode of Brain Injury Bites, Brooke Trotter and Ashwini Kamath speak with Emma Pilling, a parent navigating the emotional and practical realities of raising a child with an acquired brain injury. Emma shares the story of her son Charlie, who developed hydrocephalus as a baby, and reflects on the impact this had on her family, career and identity.

From the moment of diagnosis to advocating for her son’s education and wellbeing, Emma offers an unflinchingly honest account of the gaps in support, the grief of changed expectations, and the strength it takes to keep going. Now working for the Child Brain Injury Trust, she brings both lived and professional insight into how families can be better supported.

They explore:

What hydrocephalus is and how it can affect the developing brain
The emotional impact of a sudden diagnosis and medical trauma
Parenting through grief, guilt and uncertainty
Being dismissed by professionals and fighting to be heard
The importance of early intervention and trusting your instincts
Finding support, connection and purpose through lived experience

Whether you are a parent, professional or someone living with the effects of brain injury, this episode offers deep empathy, practical wisdom and a call to treat families with the compassion and clarity they deserve.

For a transcript, follow the link below:

Episode Transcript

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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: Navigating Hydrocephalus – with Emma Pilling