On Wednesday 15th June we did something wonderful. Myself, my husband and our son Charlie got the chance to attend Harry’s Hydrocephalus Awareness Trust’s first parliamentary reception hosted by Michael Gove at the House of Commons. It was an amazing event attended by MP’s, medical professionals, supporting professionals, hydrocephalus families and the US Hydrocephalus Association who came to talk about their work with Harry’s HAT to expand the hydro assist app to the UK (which will be brilliant for families like ours).
We love Harry’s Mummy, and all the Harry’s HAT team and think they are so inspirational, it was lovely to finally meet them in person. We were thrilled when they approached us to be part of the “Hydrocephalus, what I wish I’d known” book. We were even more honoured they asked us to speak at the event.
It’s strange because when the mistakes around Charlie’s head growth occurred I remember being so upset and angry, I went on a mission. It was a mission to get the errors recognised. We informed the local health visiting service of our concerns and a serious clinical incident investigation was undertaken and the findings showed failings. We registered a complaint with the NHS and one response, one meeting where I ripped that response to pieces and a second (more appropriate response) and a promise to review training for GP’s and we felt we had some progress. It also didn’t feel enough, we started to realise in the Hydrocephalus groups we joined on social media that so many people had similar heart breaking stories, so similar to ours. We started to realise that while Charlie had been failed he most certainly wasn’t alone and we worried for those that came next. I remember saying “this has to change” but I had no idea how.
At the reception I was given the opportunity to tell Charlie’s story, to lay bare the mistakes and to show how it could have been so different. I was able to tell a huge room of strangers how my baby’s life was torn apart by the lack of process and professional guidance. I was able to tell people what a difference head measurements, and not just head measurements but knowing what to do with those measurements, would have made to his life. It was a very emotional thing to do. I cried, I didn’t want to but I did expect it may happen. I did give a five minute warning of the possibility of tears so I believe that exempts me somewhat.
I’m so proud I got the opportunity to tell his story. I said “please remember Charlie” the little boy who spent the entire event on the terrace his hurt brain unable to understand and cope with the hustle and bustle inside. Remember Charlie, remember how different it could have been and that a robust head measurement process would literally change lives.
Four years ago I said “no more” and at the Reception I got to say that loudly to people who could make a difference to the lives of children like Charlie. That’s a pretty amazing thing to do and I hope one day Charlie is able to understand that he matters, so much, we can’t change what happened to him but we can try to ensure it doesn’t happen to others.
When asked about the Reception, Harry’s HAT Founder Caroline Coates said “it was an inspirational day which has raised awareness of a relatively common, yet often misunderstood, condition which affects so many children including my own son Harry. The event has also helped us to highlight why head measurement in babies is so critical in helping those born with hydrocephalus to have the best chance in life”
of our speech she said “It was such a privilege to have you there. Telling Charlie’s story had such an impact on everyone in the room. You were amazing! They say you should never meet your heroes- well we met ours and you guys are even more amazing in real life!” 💙🧡
Michael Gove said ‘I was absolutely delighted and honoured to host the parliamentary reception for Harry’s Hat at the House of Commons earlier this week. Harry’s Hat is a hugely important charity, which is providing vital support for children and their families who are affected by Hydrocephalus. It was so wonderful to see Caroline Coates again, the Founder of Harry’s Hat, and to meet some of the other brilliant people working to raise awareness of this condition and the importance of head circumference measurement in infants. I was also very pleased to see so many people there showing their support for these brave children and their parents, and it was great to see a number of other MPs attend too, as well as ministers from the Department of Health & Social Care.’
It was the most memorable day and we were so proud to have been part of it. We hope the small part we played helps the next generation of hydrocephalus sufferers secure a quicker diagnosis
About a Boy and Hydrocephalus 