Here at Harry’s HAT, we feel passionately about early diagnosis.  1 in every 1000 babies are born with congenital hydrocephalus each year. That means in 2019 for example across England and Wales alone, 640 babies were born with the condition.

Whilst we know that the condition is often picked up at the 20 week scan, we also know of many cases where this isn’t the case.

We wanted to find out what families felt about scanning in later pregnancy. We also wanted to know whether they felt that there is more that could be done to help in those difficult early days after diagnosis. 

The findings will be shared at out forthcoming Parliamentary Reception and with neurosurgical teams who specialise in hydrocephalus across the UK.

We are keen to point out however, that hydrocephalus can also develop after birth and in later life, (acquired hydrocephalus) so it is even more common than the 1 in 1000 statistic which is regularly shared. This research was led by experienced researcher Non Hill and supported by students from the Royal Holloway Community Research Initiative.