Little Journey’s ‘Spotlight Sessions’ gives parents who can often feel alone and unheard, a safe space to talk about their experiences navigating healthcare with their child(ren).
In this episode, our hosts, Dr Megan Hofmann and Dr Vicky Queralt, are joined by Caroline, a wonderful mum of 4. They talk about her son Harry, who was diagnosed with hydrocephalus and received a life-saving shunt at 8 weeks old. They learnt more about the condition, the multiple brain surgeries Harry had as a baby, and the ongoing uncertainty his family faced knowing his shunt could become blocked at any moment in the future. Here's a summary of their chat, you can watch the full episode on our YouTube channel.
While Harry gets to enjoy playing football, going to school and spending time with his friends, Caroline and her family are always aware that Harry’s shunt could block at any given moment, resulting in another brain surgery.
Harry had his first ever brain surgery as a baby and has had numerous appointments during his lifetime to manage his hydrocephalus. Over the years Caroline and Harry have built a strong relationship with Harry’s Neurosurgeon and Neuro Nurses.
Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) was founded in 2018, by Harry’s family and friends in response to the need they identified following Harry’s diagnosis with hydrocephalus.
They are the only UK charity to focus solely on paediatric hydrocephalus and its impact. Their overall aim is to make life better for children with Hydrocephalus, as well as for those who love and care for them. The charity has grown holistically based on need and input from other families who are also on the same journey.
1) Support your child's needs – Caroline shared that sometimes doctors will talk over Harry, and directly to her regarding his treatment.
“He's in the middle and it's, you know, all the adults are talking over him about what best to do and that sort of thing”.
It can be confusing when people are talking about you, and not to you. From a young age, it’s important to involve children in conversations around their care. We’re very passionate about this at Little Journey, our app has been designed for families to use together. Our animated virtual tours explain procedures and hospital visits in an age-appropriate way, whilst our articles can help caregivers to start conversations about their child’s care.
2) Preparation is key – Caroline emphasised the importance of being transparent with Harry. He likes to know exactly what’s going on.
"We talk to him. We're honest with him. He will say to me, this is not going to hurt me, is it? And if I think they're going to have to put a line in him or do something, I won't promise him that it won't because that's not fair on him".
As children get older and better understand their health, we understand that parents want to be honest with their child but can struggle with how to explain a procedure without scaring them. Little Journey provides children with different content depending on their age and developmental skills. They get given the what, when, how and why so they know exactly what to expect.
3) Have confidence in your knowledge – Caroline has 3 other children who were also facing uncertainty and anxiety around their brother’s hydrocephalus diagnosis.
“We've tried to encourage them to be honest with us and to ask us questions”.
It's natural for Harry’s siblings to have concerns about his health. By creating a safe space for open communication within the family, parents can provide reassurance. Little Journey helps parents feel equipped to answer these questions with articles that provide information around their child’s procedure.
We want to say a big thank you to Caroline for sharing her story with us! Head over to our YouTube channel to watch the full episode, and click subscribe to be notified of new episodes in the future 👉 https://www.youtube.com/@little_journey
If you’re interested in being a guest on a future ‘Spotlight Sessions’ episode, please get in touch at participate@littlejourney.health. We’d love to help you share your story.
Harry’s Hat charity: https://harrys-hat.org
The hosts, Dr Megan Hofmann and Dr Vicky Queralt, are clinical psychologists at Little Journey and have over 30 years of NHS experience between them. They’re also mums who are passionate about supporting children and their families through healthcare journeys.
We know that 75% of parents face anxiety around their children’s healthcare procedures. By creating a platform for personal stories, we want to provide a safe space and create a sense of community for parents looking for support during their child’s healthcare journey.