Knowledge Cares

Knowledge Cares. 

Hydrocephalus affects around 1 in 770 babies born each year, and is one of the most common conditions treated by paediatric neurosurgeons. Babies with hydrocephalus have an abnormal build-up of fluid in the brain. The extra fluid leads to increased pressure, and without treatment, it can be fatal. 

We are excited to share with you our ambitious project to determine the true impact of paediatric hydrocephalus across the UK, called ‘Knowledge Cares’. 

The Knowledge Cares programme will invest in research that helps us understand the true scale of the condition, and highlights the needs of specific ‘at risk’ groups. 

Hydrocephalus affects thousands of children and families, yet we don't fully understand its true impact. 

This knowledge gap hinders our ability to understand the scope of the problem, identify best practice, develop evidence-based interventions, and advocate for policy changes to improve care. 

This project will drive forward research initiatives that can make a lasting impact.

Hydrocephalus is a complex and challenging condition, that requires timely diagnosis and treatment, to prevent permanent neurological harm or death. There are many different underlying causes, such as prematurity, spina bifida, infections, cysts, brain tumours and head trauma. 

Each underlying cause poses its own unique challenges for affected children, and their families. 

For example, one gap in our understanding is the impact of hydrocephalus in premature babies.  Around 25% of babies who are born prematurely (before 37 weeks of pregnancy) will develop a brain bleed in the first few days of life, and around 30-50% of babies with a severe bleed will develop hydrocephalus. These babies are at significant risk of permanent cognitive and motor impairments, and many will battle significant issues with their lungs, bowels, and infections, in their first few weeks of life.

The burden of care on affected children, their families, and healthcare systems is considerable, and varies widely. 

As well as many children requiring multiple brain surgeries and hospital admissions for hydrocephalus throughout childhood, many will require long-term follow up for other complex conditions associated with hydrocephalus.

Despite advancements in knowledge and care, there are still many unanswered questions about paediatric hydrocephalus, and the day-to-day challenges affected children and families face. 

Your support for paediatric hydrocephalus research can make a real difference in the lives of affected children and their families, and contribute to the advancement of the field.