Hydrocephalus is a build-up of fluid in the brain, which can put pressure on the brain and cause damage. I’ve learnt a lot about the condition after my daughter Eliza was born and I’m keen to raise awareness about how others can support children with Hydrocephalus.
Life has been quite different for me and my fiancée Megan since our daughter Eliza was born in February. Eliza arrived over 2 months early at 31 weeks and 5 days. After a routine head scan, we learnt that due to prematurity she was born with a bleed on the brain which led to a secondary injury of hydrocephalus. She needed brain surgery at just 7 weeks old and had a shunt fitted to control the excess brain fluid. Eliza will live with hydrocephalus for life.
There was a lot of information to take in about the condition and how to support Eliza. I’m really grateful that Birmingham Children’s Hospital introduced us to Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) who taught us more about hydrocephalus including signs that Eliza’s shunt isn’t working, which will be a risk to her life should it block and/or stop working.
Since August I’ve become Chair of the Board of Trustees for Harry’s HAT to help support the charity’s 4 key priorities:
• Awareness: 1 in 770 babies will develop hydrocephalus each year. Harry’s HAT was one of founding partner charities for World Hydrocephalus Day, helping to raise awareness of the condition and global disparities in care.
• Campaigning for change: our Get-A-Head campaign calls for every baby to receive recorded head measurements with a simple paper tape measure to help identify any problems early – abnormal high head growth is a sign of Hydrocephalus. Please support our campaign by signing this petition
• Support: no family should feel alone after a diagnosis, and I know we were really grateful for the support when Eliza was diagnosed with something that we’d never heard of.
• Research and Training: we gather research from children and families to inform treatment options. This has informed our work on shunt pathways strengthening our call for changes.
Find out more about World Hydrocephalus Day.
