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 was missing a section of his brain. The world stopped turning.
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 lucky.
Harry was born on a Monday, two weeks after the initial diagnosis. 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.
We were discharged five days later. Home to enjoy life with our ‘miracle baby’ – “come back for monitoring!” 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 (water on the brain) and by eight weeks they inserted a shunt – a device inserted in his brain to drain the fluid and keep him alive. Despite not being able to spell it, we learnt that Hydrocephalus is relatively common, affecting 1 in every 1000 children in the UK. It is the most common reason for brain surgery in children.
It is, however, a complicated and life-threatening condition:
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 (Roald Dahl’s own child was dying and they came up with a device in desperate bid to save him). 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!
When Harry goes into hospital he frequently comes into contact with front-line workers, many of whom have very little experience of Hydrocephalus. This is not their fault. It is due to the lack of funded training opportunities available to them. In fact, in one case, a nurse at a local hospital volunteered to do a 2am night transfer to the neurological hospital (some forty miles away), simply because she wanted to help us and to learn more about the condition. 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.
For NHS nurse specialists working in the field we also found that training or access to conferences or benchmarking (professional peer-to-peer) meetings usually comes at a cost to the individual neuro-nurse who wants to attend. In many hospitals they have to pay for their own attendance at conferences or training. These events are not a luxury, but instead provide training and experiences that can enhance nurses’ skills and help them access the latest information; information which would benefit children like Harry. Furthermore, nurses often have to make up the time once they return to their hospital. To us, it is not as if they are taking a holiday. They are simply trying to enhance their knowledge so that they can give even better patient care.
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 – sadly now on hold since COVID-19. The money we raise is helping to change things for children like Harry and give dedicated front-line and NHS professionals access to funds so that they are not out of pocket for simply wanting to enhance their knowledge. The charity’s mission is to ‘make life better for children with Hydrocephalus’ through Awareness, Research and Support and we need your help.
During COVID-19, advice or parents and carers
For carers of a child with the condition it is important to note that, in these challenging times, a shunt blockage is still life-threatening and if your child is showing symptoms you still need to seek urgent medical attention. We know that many neuro-nurses are being redeployed and therefore getting through to your nurse might be challenging. Do not wait for a nurse to call you back as it might be hard for the message to get through- go to your local A&E. We are in the process of uploading advice on our website about putting together an information folder which could help if your child needs to go to A&E during COVID-19.
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