Have you heard of Hydrocephalus? Hydrocephalus is the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. Caroline shares her powerful story about her son Harry who has the condition. Like so many inspirational mum who already have loads on their plate, Caroline has set up a Hydrocephalus charity to support people from diagnosis and beyond.
Here comes Harry leading to us establishing our Hydrocephalus charity
From day one, my pregnancy with Harry didn’t feel quite right. I bled lots, ended up in hospital at 16 weeks and felt horribly anxious throughout. Outwardly, however, I looked good. My thin hair had thickened, my skin looked pink and the boobs were fairly impressive! Midwives kept telling me that as an ‘older mother’ I was over analysing everything. Harry is baby number four!
At 36 weeks they scanned me to see where the baby was lying. During the scan we were told that the baby had a loss of brain component. The world stopped turning. We ended up sitting in a ‘counselling room’. The very same room which had made my blood run cold throughout the pregnancy.
We were transferred to a specialist hospital. After what seemed like an eternity, we were told that ‘the baby’ had an arachnoid cyst and that we should prepare for a very long stay in the Special Care Baby Unit- if we were in fact, lucky enough.
Harry was born on a Monday, two weeks after the initial diagnosis. Mondays, as I now know, is when they deliver the very ill babies (apparently there are more consultants around!). During the delivery there was a team of thirty people including a crash team and a resus bed. Harry, however, didn’t play by the rules and came out pink and screaming. They smiled, shook Matt’s (my partner’s) hand and walked away.
Five days later we were discharged. Home to enjoy life with our ‘miracle baby’. “Come back for monitoring – but Wow you’ve beaten all the odds,” they said. “Come back in two weeks and we’ll monitor him.” But it was soon all too apparent that something was horribly wrong. Harry was in pain, lots of pain. He screamed, constantly, managing to hit a pitch which, despite him being my fourth baby, chilled me to the core. They soon realised that his head was growing too quickly; he was diagnosed with Hydrocephalus and by eight weeks they inserted a shunt- a device inserted in his brain to drain the fluid and keep him alive.
By his first birthday Harry had:
- Endured four brain surgeries
- Undergone five MRI scans
- Received six General Anaesthetics
- Seven in-patient admissions
- 23 trips to A&E, including several blue lighted trips
- 32 planned hospital appointments.
As we journeyed through the complex and frankly terrifying array of medical procedures, assessments and prognoses, we found ourselves feeling very isolated. We found out that research into shunt technology (the device which keeps Harry and 1000s of children like him alive) hadn’t really progressed since Roald Dahl was involved in its development in the 1960s. Furthermore, there is a 50% chance that this life-saving device could fail within the first year of insertion. How true this turned out to be for us!
Finally, when Harry goes into hospital he frequently comes into contact with front-line workers, many of whom have very little experience of Hydrocephalus due to lack of training opportunities. Speaking to such professionals highlights that they have a passion for and a willingness to learn more, but there simply isn’t enough funding within the NHS. We have found this to also be the case for health visitors, GPs and workers in pre-school settings. If front-line professionals are not educated about issues relating to Hydrocephalus, then they risk overlooking symptoms or mis-measuring head growth, which can have disastrous consequences. We have direct and personal experience of both.
In response we have founded Harry’s Hydrocephalus Awareness Trust – Harry’s HAT. Yes, I know, acronyms are not our strong point! In April 2019 we received registration for the charity and since then our lives have turned into a fundraising whirlwind. The money we raise is helping to change things for children like Harry. The charity’s mission is to ‘make life better for children with Hydrocephalus’. We do this through Awareness, Research and Support and we need your help.
If you want to learn more about our Hydrocephalus charity please visit www.charitychoice.co.uk/harryshatcharity