Freddie

Last June, life as they knew it changed for Vickie and Steve. What started as a general illness for their three-year-old son, Freddie, descended into their darkest moments as Freddie became so ill, he went into complete heart block.

“Before he became unwell, Freddie was a happy and healthy little boy. He loved to sing ‘I Can See a Rainbow’ with his big sister, Millie, at the top of his lungs.

In June 2024, Freddie fell ill and rapidly got worse as the days went on. I took him to the GP a couple of times for check-ups, and Freddie was diagnosed with a virus that was making him very sick. But, the next day, Freddie declined massively – his limbs were cold and his lips were blue, and we struggled to keep him awake as we rushed him to our local hospital in Merthyr, South Wales.

At the start of what would become a months-long medical journey, we discovered that Freddie was sick with not one, but multiple aggressive viruses. They had ravaged his little body and made their way into his heart. At Merthyr Hospital, Freddie was so unwell he needed defibrillation, which sends an electric shock to the heart to help it restore its normal rhythm. He received two shocks to regularise his heartbeat. It was one of the most distressing days of our lives.

The Wales and West Acute Transport for Children (WATCh) team, which has been supported by The Grand Appeal since it began 10 years ago, met us in Merthyr and explained that Freddie would need transporting to Bristol immediately. It was there that Freddie could access the care he needed, because Bristol Children’s Hospital is the only hospital offering specialist cardiac treatment across the region.

The WATCh team are incredible. We live in Brecon, South Wales, which is really rural. Our nearest hospital is 30 minutes away, and we’re nowhere near a specialist children’s hospital.

They arrived from their base on the M5 so quickly to collect Freddie. What I didn’t know at the time was that as Freddie was being worked on in Merthyr, the WATCh team were giving instructions to the staff there to keep him alive. Not only this, but they were assessing Freddie’s heart scans, getting ready to treat him in the ambulance, and prepping the team in the Paediatric Intensive Care Unit (PICU) in Bristol for his arrival. His survival depended on the WATCh team’s quick thinking, specialist knowledge and incredible calm under pressure.

Freddie was in total heart block. There wasn’t enough oxygenated blood getting to his internal organs, and he was in complete liver, kidney and heart failure. He was unbelievably unwell. They arrived, stabilised Freddie, had to defibrillate him twice and then put him on full life support before loading him into the ambulance.

I gave him a kiss goodbye, and then we were on the road, on the way to Bristol. I couldn’t ride in the back of the ambulance because the team needed all the space they could get for Freddie’s life-saving equipment.

I was told if they pulled over, it would only mean one thing. So, for the entire hour and a half journey I was just praying, please don’t pull over.

Vickie, Freddie’s mum

We arrived at Bristol Children’s Hospital and the WATCh team handed over to the staff in PICU. It was all so smooth, and we immediately felt like we were in good hands.

WATCh – it’s a service that I never knew existed until we sadly had to use it. I dread to think what might’ve happened if it didn’t exist.

Freddie spent three and a half weeks on life support in PICU. The whole time Freddie was in Bristol, I didn’t go back to Brecon once. Millie stayed with her grandparents and came to visit Freddie on the weekends. Steve rarely went back and forth, but someone needed to stay by Freddie’s side because it was all so touch-and-go.

While he was on the unit, Freddie was put onto an extracorporeal membrane oxygenation (ECMO) machine, which acted as his heart and lungs. This gave his little heart some rest and gave Freddie the chance to recover from the viruses that were attacking his body. Freddie was actually the first patient in the UK to go on the ECMO circuit of this type, which Bristol Children’s Hospital were lucky enough to have recently housed.

At this point, we knew the risks of the treatment Freddie was receiving. We had to sign a couple of consent forms with death clauses, which was absolutely terrifying for any parent. But we knew Freddie’s body was completely failing and these treatments were the only chance of keeping him alive.

The ECMO machine gave Freddie the most precious thing it could – time. The right decisions were made at the right times by the staff in PICU, and without these decisions being made, there is no doubt we’d have lost Freddie.

It’s not just the pioneering equipment that saves lives – it’s the people on the unit working tirelessly 24 hours a day, seven days a week, to save children like Freddie. If it wasn’t for the WATCh team, the PICU staff and ECMO machine, there is no doubt in our minds that we would have lost Freddie. We’d have been left without our little boy and our daughter, Millie, would’ve been left without her little brother.

We will forever owe them everything.

Freddie’s life was saved by the incredible and selfless medical teams at Bristol Children’s Hospital.

Vickie, Freddie’s mum

Freddie pushed through every single day and after almost a month in PICU, his body slowly started to heal. He was moved to the High Dependency Unit and then, finally, discharged to Cardiff, where he could continue his treatment and physiotherapy closer to home.

A year on, and Freddie is doing wonderfully, with his big sister – and biggest cheerleader – right by his side.

Sadly, he suffered a global hypoxic brain injury when he was really poorly, which means the brain damage caused by his heart block has significantly impacted his functions. But, through neurorehabilitation, we’re working hard to get him as close as possible to the little boy he was before. He still doesn’t have his lovely voice back, but every day, we see progress.

Physically, Freddie is meeting new milestones regularly. He’s now able to climb the stairs unaided, which is something he’s worked so hard to achieve since we’ve been home. It just shows how determined he is, and that determination is what got him through the darkest times. Freddie is back in pre-school part time, with the hope of him joining a reception class next September. While he’ll be a year late traditionally, it’s where Freddie needs to be to give him the opportunity to relearn foundational skills that he lost last year.

We’ve organised all sorts of fundraising events over the past year, from Freddie’s auntie running the Newport Marathon to our family hosting a ball and a charity football fête. Freddie’s preschool and his big sister’s class even organised a wheelathon, racing their bikes around the playground! We’re so grateful to everyone who has supported our fundraising events, and the amount Freddie’s Sunshine Fund has raised so far is a testament to the generosity of our community and our family.

Recently, we came back to Bristol Children’s Hospital for a cheque presentation with The Grand Appeal and some of the incredible staff who treated Freddie, including Dr Tom Jerrom, the specialist lead consultant for ECMO. We celebrated our current standing total – over £15,500 – and being back reminded us how far Freddie has come.

So far, our fundraising has supported staff training for the ECMO machine, because it’s so important to us that this piece of life-saving equipment is available to the children who need it. Our raised funds have also supported the amazing work happening in PICU.

We hope that as time goes on, Freddie’s Sunshine Fund will continue to raise thousands more for other families like ours, so the level of care Freddie received is available for every child who comes through those doors.”