Hydrocephalus is a swelling of the brain
caused by excess build-up of cerebral fluid.
This leads to an increase in intracranial pressure
resulting in serious brain complications.
It affects 1 in every 1000 babies born in the
UK today and is the most common reason for
brain surgery in children.
Despite its prevalence, there is limited
knowledge about the condition and limited
investment into its management nationally.
To reduce the pressure, a shunt is inserted which
allows some of the fluid to drain from the brain
to another area of the body. There has been very
little advance in shunt technology since its
co-invention in 1963 by the author Roald Dahl,
whose son Theo developed hydrocephalus.
Half of all shunts block within the first year,
requiring further brain surgery.
Hence, the inception in 2019 of Harry’s
Hydrocephalus Awareness Trust (“Harry’s HAT”).
This is only UK charity to focus solely on
hydrocephalus with a mission to improve the
life and outcomes for children with the
condition. Harry’s parents founded the charity
in response to a need identified following their
son’s diagnosis with hydrocephalus:
“Harry was just eight weeks old when
his shunt was inserted and by his first birthday,
he had already endured four brain surgery
procedures. We found ourselves isolated by
Harry’s condition and struggled to access the
support and information we needed.”
Harry’s HAT has the following key objectives:- To raise awareness of paediatric
hydrocephalus. - To fund training so that front-line workers can
learn more about the condition and its
management. - To fund research to improve the outcome for
children with the condition. - To provide quality sign-posting support for
families journeying through the condition.
Since its launch, the volunteer-run charity has
raised over £62,000, which has enabled
paediatric nurse specialists to attendSignal Boost
conferences, peer networking forums and
workshops to improve their understanding
and management of hydrocephalus.
The charity is collaborating with major
universities to understand the impact of
hydrocephalus on families through patient
engagement studies and we are currently
embarking on research into antenatal care
and the impact of third trimester screening on
health outcomes. To this end, we have created
a short online questionnaire for UK families to
provide feedback: harrys-hat.org/survey
We are also looking for financial support,
opportunities to connect medical and scientific
experts and we would like people to share our
work widely to raise awareness and
engagement. It has been over half a century
since the invention of the shunt and it is time to
advance the treatment of hydrocephalus into
the 21st century.Want to help?
Please do get in touch to help us provide a brighter future for our families touched
by hydrocephalus. Thank you. Text to give: Text HYDRO to 70490 to donate £3
(Texts cost £3 plus one standard rate message). Donate online: harrys-hat.orgWelcome to our Signal Boost project – a page for charitable organisations
to get their message out to a global audience, free of charge. Today, a message
from Harry’s HAT
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