In December 2023, our son Harley was born. It was the most wonderful birth and the perfect present, bringing home our third baby to his big sister and brother just in time for Christmas. In January 2024, our whole family was struck down with a sickness bug. However, once the rest of us had recovered, Harley’s sickness continued. Harley was born with a tongue tie, so we initially thought his continuing sickness was a result of trapped air when he was feeding. So, we decided to get it divided one Thursday. On the Friday, we noticed that Harley was making strange eye movements. We sent a video of him to family and friends, because it just didn’t seem right. However, as he was only four weeks old, we thought he was maybe just learning to move his eyes. By the Sunday, we became more concerned about his eye movements, and something just didn’t feel right. 

First thing Monday morning, I rang the GP and was given an appointment with a practitioner. I showed him the video of Harley’s eye movements and explained his symptoms. He told me “a baby wouldn’t be screaming this much if there was something serious going on.” He prescribed Harley Gaviscon and told me to ring back if things got worse.

 I left that appointment, and something just didn’t sit right with me. I rang my health visitor on the way back from the appointment and she said we needed to go to A& E instantly. We arrived at hospital, where they instantly noticed his fontanelle was bulging. They measured his head circumference, and it was off the chart. They did an ultrasound and found that he had a bleed in the brain. They sedated Harley for an MRI scan, which confirmed a huge bleed in the right ventricle of his brain. 

 We were blue-lighted to a specialist neuro-centre where they performed a ETV (Endoscopic Third Ventriculostomy) when Harley was just five weeks old. They also diagnosed Harley with hydrocephalus. Something we’d never heard of, and something we didn’t understand. It was a completely unknown world for us and we were thrown in at the deep end. 

Within a week, we were back at the neuro-centre as Harley’s wound began leaking CSF (cerebrospinal fluid). My mind was in pieces, thinking that he would need another surgery, but luckily they were able to control the leak with a drug to reduce how much CSF was being produced. 

However, 12 weeks after the original surgery and just when we started to think we might be in the clear, we were told that Harley’s original surgery had failed. We had hoped and prayed the ETV would work as it meant fewer risks in the future and a lower chance of Harley needing more surgery. However, this wasn’t to be. The ETV was no longer working and he needed a second brain surgery at just 17 weeks old. 

At that point, Harley was fitted with a VP shunt. 

I didn’t even know what a shunt was. I didn’t want to know. But, this was our reality. We felt very much alone, like no one else was going through it. The doctors and nurses, as incredible as they were, were not there to support us. They were there to support Harley. 

Harley struggled to hold his head for a number of weeks after the ETV but after that, he became very strong very quickly. He took a few weeks to recover from his second surgery but, after that, he went straight back to hold his head up and doing tummy time. 

Harley is now walking, dancing to every song, clapping, winding up his brother and sister, and so much more. He has met every single milestone. We celebrate everything, as we were told he might never be able to hold his head up. 

We have recently found out that Harley developed his initial bleed through an immature blood vessel bursting during birth. This is something which affects less than 2% of babies. Everything I read online when I was trying to understand why this happened to him pointed towards babies who were born prematurely and/or delivered using forceps. Neither of these applied to Harley, so we still don’t understand why the blood vessel burst. However, he is still in that 2%.

Harley has not been diagnosed with any other conditions. We are so proud of him for overcoming everything he has been through. I wanted to share his story because he doesn’t fit the “norm” of this diagnosis and, when it happened to him, I couldn’t find anything positive online. So, to anyone reading this, please know you aren’t alone. ♥️

 Things I have learnt along this journey:

• Each case is individual. Try not to compare your child to others 
• Take each day as it comes, and breathe 
• If something doesn’t feel right, go with your gut. You are your child’s advocate, so always fight for what you believe is right 
• Worrying is part of everyday life, but try to enjoy the small things and smile (this is still something I’m trying to teach myself) 
• Some people won’t understand what you’re going through and will make comments you won’t like. It’s okay for them not to understand because there is a community who do ❤️