Episode 26: The Power of Purpose with Caroline Thwaites

by | May 5, 2020 | Uncategorized | 0 comments

Caroline Thwaites, founder of the Harry’s HAT charity, is here to talk to us about purpose, and how having a strong sense of why has helped her to overcome feelings of self-doubt and imposter syndrome.

“I’m the founder of a charity called Harry’s HAT, which stands for Hydrocephalus Awareness Trust. Hydrocephalus, it means water on the brain. Harry, who’s our fourth child, was born with Hydrocephalus.

Throughout the pregnancy, I just had this feeling that something was not quite right.

And at 36 weeks I had a routine scan at the local hospital and we were told that there was a loss of brain component, which as you can imagine, was probably pretty devastating. They didn’t know what they were looking at. They’d never seen it before on the scan.

That same day, we were referred up to a specialist hospital after what felt like an entire lifetime. And they told us it was an arachnoid cyst and that was taking up a quarter of our baby’s brain. They told us that we should prepare for a very long time in a special care and a specialist hospital if in fact we were lucky enough to get to that point.

So, when Harry was born, two weeks later, and there was a huge team there. They had to coordinate it to make sure that there was an intensive care team and in neonatal intensive care next to him. To everyone’s surprise, Harry came out pink and screaming! Instead of being there for weeks and weeks and weeks, we were discharged in five days. We were told to go enjoy our miracle baby and get on with life while keeping a close eye on him.

Long story short, two weeks later we went back because he could hit a scream, a kind of pitch that’s really hard to describe. I’ve had three other babies, it’s nothing I’ve ever heard before. He was obviously in distress and they mentioned his head and it was growing very rapidly, which is a sign of Hydrocephalus, which means that’s water in his brain basically. And it kept growing.

So by the time he was eight weeks, they put a shunt in his brain which basically keeps him alive as it relieves the pressure and the fluid from his brain. Unfortunately, as in 50% of cases, the shunt failed. By the time he had reached his first birthday, he’d already had four major neurosurgeries and lots of trips to the hospital.

But he’s still here and he’s bright and he’s bubbly and he’s ridiculously naughty!

Now that he’s 2, he’s just learned how to say all the words that we really don’t want him to say. He’s meeting his targets, which is amazing!

Still, the condition is life threatening. If the shunt blocks, he needs to be in neurosurgery within four hours.

When we talked to nurses and frontline professionals, we found out how much they were struggling to get the training, but how much they wanted it.

Harry looks like a poster pinup boy for Boden. He looks amazingly well cheeky and healthy. It’s lots of people across the UK and people really don’t understand the condition.

I knew I had the skills to do something about it… plus I want to keep my baby here. You know, if I’m very honest, our first reason for setting up the charity was a selfish reason cause we wanted to make life better for Harry.

And then I started to hear from people from all across the UK with similar stories.

I never questioned my fundraising skills because do that in my day job, and other people tell me I can do that. What I have questioned is how we’re perceived. We do a lot of social media and the aim for doing that is to raise awareness of the charity.

We sometimes document Harry’s journey and I’ve never been very good at showing my own feelings. We started to write a blog and I worry that people would think that’s self-indulgent.

I’m good at asking for money for other causes, but this is so deeply personal. When somebody doesn’t support it as I think perhaps they could do, it can feel quite hurtful to be honest.

I think social media has done two things. First of all, we wouldn’t be here without it. Right after we set the Instagram account, there were lots of people contacting us each sharing their own story. So, it was a real motivation and it reinforced the fact was that there was a need to do this.

However, we are putting out a lot about our own children and how this affects them. And as a 40-year-old mom, I’m still like “Ooh, I put something out the other day, which I thought everyone would love and it didn’t get very many likes how dare they be like this”. It didn’t get the recognition I expected it would get. I think I kind of questioned myself a little bit. I don’t think it’s that healthy, but I think without it we couldn’t bring the charity as quickly as we have.

I think if you talk to lots of parents where the children have additional need, there’s always somebody better, but there’s always somebody in a worse position. You actually get these feelings of guilt. Harry has a life-threatening condition and it’s not past his life limiting. In the scale of hierarchy, sometimes I feel “Gosh, we are lucky”. We’re talking about this poor family down the road, who just lost their child or fighting for their life in intensive care. So, we’re doing this and that and it’s really difficult and I think that sometimes due to your own self-confidence.

I also often look at it from Harry’s point of view. He’s Harry, our little boy. We don’t want him always to be seen as defined as Harry Hydrocephalus. Sometimes, I worry about what this will do to him in the long term. Thankfully, we’ve got an amazing board of trustees who give their time voluntarily to help the charity and they’re very mindful that in the long-term we will make the charity much more about the condition rather than our journey.

The condition affects one in every thousand children. Our basic aim is to improve the life chances and the lives of those children and the parents/families who love and care for them. Hopefully as he gets older, he will realise why we’ve done it and he’ll support that. This is about the condition it’s to improve awareness, research, to give access to training and ultimately, it’s to connect families like ours.

Caroline Thwaites Harry's Hat
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I’m still one of these people that if I’ve got a good point to raise in a conference, I hate putting my hand up. I know that I’ve got something useful to say, but the thought of actually having to say it in front of lots of people is just makes my tummy go.

I think with Harry’s Hydrocephalus Awareness Trust, I’m so passionate about what we’re trying to do. If the fundraising is all about going into room and if there’s someone in that room that can further your cause, you want to connect with them. Since I’m so passionate about what we’re doing, I’m quite confident to walk up to them and say “This is me, this is the story and this is what we’re trying to do.” But it doesn’t come easy. It still makes me feel uncomfortable. I get the sweaty palms and all that sort of thing.

I try to tell myself how rubbish I’ll feel if I don’t take that opportunity. It doesn’t always work, but I try to put myself in five minutes time that opportunity has passed. And fundraising is often about that, that there, right at that moment opportunity. How am I going to feel if I walk out this room and I haven’t talked to the person that I want to talk to?

Also, because it’s my son that’s fronting the organisation. I feel like I’m doing it for him. It made me braver, but I wouldn’t say it’s anything I’m particularly comfortable doing. It got easier over time the more I’ve done it.

The highs of doing it and getting to speak to that right person, the decision maker and the person that can further it, that is the reward. So I focus on that as a reward. I know quite soon we’ve got to go and talk to lots of people who work in health and who work senior level about what we’re doing.

It took me ages to learn to spell Hydrocephalus and now the fact that we’ve got to almost talk to people who are thinking that we’re experts. I guess that’s the imposter syndrome coming in, isn’t it? You know that the people in the room are much more qualified in that area, but I’m probably the most qualified in fundraising. So it’s just trying to hold my nerve I guess.

Actually, we are experts in terms of the parent journey and our experience and what’s worked and what hasn’t worked and see what it’s like to care for a child with this condition as well as the impact it has on his siblings and, and the wider family and everything else as well.

In my day job, I’ve won a few awards for fundraising and I’m quite a good brand fundraiser. But in terms of my work for Harry’s Hydrocephalus Awareness Trust, it’s not so much about the awards and the accolades, we’ve got a good story to tell. And we’ve got experience and I guess that counts for a lot. It’s because of our story, our personal experiences, we can bring the conversation to the full. And people are happy to come and talk to us and share their experience.

It is important to remember where your actual expertise lie and the reason why you’re in the room when you’re having these “Imposter Syndrome” feelings, as supposed to comparing yourself to other people and their reasons for being in the room.

We just funded a cohort of nurses to undertake further training about Hydrocephalus. One of the things we really want to do is make it easier for people working in health care who want to learn more.

We want to fund research. That’s our long-term goal. In the short term we want to raise awareness. We run the charity through awareness, research and support. And that’s what we’re doing. Everybody whose involved gives us time voluntarily. We’ve got a lovely board of trustees and we’re really lucky on the board. We’ve got people with charity experience as well as well as governance, accountancy and legal experience. So I’ve got a really strong board of people behind us that are really helping to push it forward. Our main goal at the moment is to fundraise, to enable us to, to do what we want to do and, and ultimately make life better for children like our little Harry.”






Mummy’s Diary



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