William's Story

Four-year-old William was born with the main arteries of his heart the wrong way round

He had open heart surgery at a week old which led to a catastrophic chain of events for his family. Mum Tania explains:

Being a teacher at a special needs school I thought I had a fair degree of empathy and understanding of what the parents of children with additional needs have to go through.

It wasn’t until I was in the same situation that I fully understood the degree of sleep deprivation, exhaustion and stress. No one can begin to imagine what that is like to be trapped in a constant cycle of worry. 

You just get over one awful moment and then the next comes along and you go back to being anxious about the future, terrified you are going to lose your child. It’s like being stuck on a rollercoaster that you can never get off. 

When William was born he was breathing but was blue and had low oxygen in his blood. The main arteries of his heart were the wrong way round so although oxygenated blood was getting from his heart to his lungs, it wasn’t reaching the rest of his body, causing his other organs to fail.

He went through emergency surgery at a day old and then open heart surgery a week later – an operation that lasted seven hours.

William was not a happy baby, he cried all the time. We found out he had a dairy allergy and didn’t seem to be developing properly. By the time he was a year old he still could not sit unsupported and did not use the right side of his body. He was very floppy and bendy, with little control over his movements.

It wasn’t until he was 16 months old that we found out why – some debris from his heart surgery had travelled to his brain causing extensive damage. It was such a terrible blow after everything we had all been through – and there was more to come.

Days before William’s second birthday he had a massive seizure which was the beginning of totally uncontrolled epilepsy with daily seizures -  and one of these seizures caused secondary brain damage.

We could not believe it; we were devastated and just kept wondering when it was all going to end. It was so scary. At that point we were so sleep deprived and overwhelmed, we were at breaking point. We lay awake all night, listening out for William, monitoring every heartbeat, every move. No one can relax enough to sleep in those circumstances.

We were literally begging for professional help at this point. We spent a year trying to get someone to even assess William and when they finally did, the conclusion was that we were coping very well on our own. It was like some awful joke.

I had heard about Julia’s House, so decided to phone just for some advice. One of the amazing nurses, Alex, came over with a two of the carers and they met us and William, it was totally fantastic because they listened and understood what was happening – and best of all told us they could help. And not just now and again, every week if we wanted it.

When they left, Pete and I both just broke down in tears. Someone was actually going to help. It was one of those pivotal moments.

I can honestly say that Pete and I would not have the relationship we do without the support of Julia’s House.

For the first few care sessions – which we chose to have at home – I stayed there to let help the carers get to know William and to ease myself in. There was no pressure for me to go, which was lovely because I needed to feel confident about leaving William - he can't tell anyone how he feels or what he needs.

I often just catch up with simple things during the sits, like going to the supermarket. Sometimes I just enjoy having the chance to have a bit of a chat. I love William to bits but you do need to have an adult to talk to now and again.

Since then, Pete and I have enjoyed some of the social activities too – we went to the Julia’s House parents’ party and had a lovely dinner and a dance together – the sort of things other couples take for granted, but so special for us.

William still can’t talk or walk and has no awareness of danger. The bit of the brain that recognises pain isn’t functioning - he doesn’t realise when he has hurt himself or if something he is touching is burning hot.

We try not to think about the future and simply celebrate each tiny achievement. He has made phenomenal progress and is trying really hard. He can make sounds and can crawl. He is at mainstream nursery and loves being around the other children.

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"What I love most is coming home from work and having William give me the most wonderful big welcoming smile and hug"

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