Without organisations like Harry’s HAT, many families will not really get to understand the complexity of this condition and will have to battle through some very difficult times in isolation. Our story is very similar to that of Harry’s parents in that Lucas was born premature and after 3 months was diagnosed with Hydrocephalus. The only treatment is surgical through the insertion of a VP shunt (a valve and tubing that runs from the ventricles inside his brain all the way down to below his stomach) that regulates the pressure inside his head.
To understand that your 3-month-old child has to have such an operation is a shock that is hard to describe. Harry’s HAT are helping many families to understand what is going on and raising money for very specific neurosurgery nursing training that is not available in many hospitals. Without this expert knowledge, as was provided to us by the exceptional nursing and neurosurgical team at St George’s Hospital, I’m not sure how my wife and I would have coped.
Many families are not so lucky and their local hospitals do not have such specialist expertise or even the information packs that we were presented with. At the time, we thought this was standard but we’ve since discovered that many families go home without even the basic knowledge of what to look out for if things go wrong.
We have learned that this is perhaps the most vital service that can be offered. If a shunt fails, the child must be taken to a neurosurgery department within 4 hours. We have sadly amassed many experiences of just how traumatic this can be as Lucas has now had 24 different neurosurgical operations.
There are many other complications with Hydrocephalus that families need to understand and whilst the only real interventions are surgical, so much can be done to help families cope through better education and in particular, more specialist nurses. It’s very difficult to put into words how grateful we are to the nursing team at St George’s, playing a part in helping to safeguard the expertise of the team is the least we can do.
The parents behind Harry’s HAT have already done so much to raise awareness of the condition and to ensure that parents know what to look out for to keep their child safe and well. In a very short time, they have:
- Funded 12 specialist nurses in the UK to access neuro-surgery / hydrocephalus training
- Engaged with neurosurgical teams across the UK to produce vital, family-friendly information to parents with a newly diagnosed child
- Become a key support to neurosurgical teams in getting information out to affected families during COVID
- Developed a peer to peer ‘befriending’ scheme so that isolated families with a new diagnosis can access support
- Secured a parliamentary reception and cross-party support to raise awareness of undersupported neuro teams
In September, many of the Stanton House team will be walking 100km (we’ve done this before and it’s a lot more difficult than you might think given the state of our feet last time out) to raise money for Harry’s HAT hopefully play a part to raise awareness of a condition that affects many more families in the UK than you can imagine.
If you would like to support us with our challenge, then please head to our Just Giving page, where 100% of the donations will be going straight to this amazing cause: https://www.justgiving.com/team/stantonhouse.
