Inspired by Simon’s story and my wife Katie’s story I thought I would give my own account of our journey with our son Albie’s hydrocephalus.

Albie was born in September 2016 and by all accounts no issues were identified on any pre-natal scans or at birth. I was already a dad of a then nearly 6-year-old boy, and I thought I had it all in hand. I was very relaxed about being the Dad of a second bundle of madness and to begin with things seemed good. Albie was happy and settled well into his role as the youngest member of our family. He wasn’t great with feeding and at the time we had no idea as to the potential seriousness of what this could mean for him.

As time went on Albie’s feeding became harder and harder, he wouldn’t settle for his bottle and wasn’t a fan of being held. We still felt everything was relatively normal and maybe the difficulties with feeding and not wanting to be held was just normal baby stuff. Looking back now, armed with the information and education you can only receive as a parent of a child with hydrocephalus, I can’t believe I didn’t make more of these difficulties which were the symptoms of hydrocephalus.

We had a particularly hard Christmas with Albie’s eating was getting worse instead of better, he wouldn’t accept his milk and we constantly ran the risk of him bringing his milk back up. It had become almost expected that he would projectile vomit after his feed and by this point, my wife, Katie was, deeply concerned and she knew something wasn’t right.

The day Albie ended up in hospital was an utter shock because I knew he had a GP appointment but didn’t expect something so serious to come from it. Whilst I was on my way home from work Katie let me know that Albie needed to go to hospital right now. I was given lots of information and could only recall, “Hydro something” and “being malnourished” and something about an “operation”. As you can imagine I was feeling very overwhelmed and was worried out of my mind.

Being dad to two boys automatically I was concerned about being able to look after him and be there for Albie and Kate whilst they were in hospital. This became a common theme for the next 4 months of my life.

Albie first went to our local hospital before being transferred to Addenbrooks in Cambridge which is around 90 miles from home. This geographical distance between the two halves of my family made everything even more difficult to navigate. It was in Addenbrooks that he had his first shunt within a week of him being admitted.

During this first week we had a very steep learning curve from not knowing what Hydrocephalus was to quickly having to gain an understanding of the intricacies of shunts and what they do. A crash course only those with a shunt, and care for those with a shunt are privy to. Unfortunately, Albie required many revisions and had multiple infections within the first 4 months of his diagnosis. This meant he was never home for longer than a week during this time.

Strangely I seemed to manage the multiple operations well, my attitude was he needed them, and it was how to make him well again, so we just needed to crack on.

The thing I struggled with the most over this time was how to manage life. We had Owen at home who still needed to go to school and needed his own support whilst he was separated from his brother and his mum. I still had to work -I work in mental health so they were very helpful and forgiving to my situation. My work is based 25 miles from home and Owen’s school adding further complications to managing the day-to-day things.

I had to manage a home, walk the dog, eat, sleep, get Owen to school and back, and drive the 180-mile round-trip to see Kate and Albie. I felt like the family go between having to be here there and everywhere and this brought with it both financial cost and a toll on my physical and mental health. I am extremely lucky to have been able to call on good friends and family to help me manage this period of our lives. They went over and above both in terms of finances and practical help, lessening the load we were carrying. The Sick Children’s Trust were also absolutely amazing as they provided a bed and support so I could visit the hospital with Owen.

As a Dad I wouldn’t have changed the role I had taken on when hydro crashed into our lives. As a parent you do what you have to,  You find strength from places you didn’t know existed. Looking back now I was worn to the bone, exhausted with this new way of life. Luckily after that initial 4-month period things have begun to settle for Albie in terms of his shunt.

With time and experience, we became more and more practiced in the art of recognising symptoms of shunt failures and more confident in our own convictions around Albie’s hydrocephalus.

Hydrocephalus will always be a part of Albie’s life and consequently part of our life. I think it has almost become a way of life, and we are no longer terrified by the thought of hospital admission. We have a well-placed system for when things do go wrong, and we have to visit ED/ hospital.  Albie is doing well generally, and we are now moving on into how we manage his educational path as he is showing signs of needing specialist support. This feels like another massive challenge in our lives, but we will overcome and move forward.

To all the Hydro-Dads out there, doing their best- trying to manage it all – you got this!