'A common childhood virus almost killed our son'
When three-year-old Freddie fell poorly with a cold, mum and dad Victoria and Stephen Julian thought very little of it. It was only when, a couple of weeks in, his temperature started to spike that it sparked what would turn out to be an incredibly difficult few weeks, where they would be told there was a chance little Freddie wouldn't make it.
After a few trips back and forth to the doctors where they were reassured it was just a virus, Freddie woke up one morning with freezing cold arms and legs. He was struggling to stay awake and "his eyes were in the back of his head".
Freddie was taken to Merthyr Tydfil's Prince Charles Hospital where it was immediately recognised just how poorly he was. So much so, he was rushed to Bristol Children's Hospital and immediately placed on life-support.
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Within days, Victoria and Stephen were told that his severe condition had been caused as a result of common childhood viruses including the common cold and slapped cheek syndrome, which eventually developed into pneumonia. Having four viruses all at once was too much for Freddie's little body to fight off, and it started to attack his heart. For the latest health and Covid news, sign up to our newsletter here
Victoria, from Brecon, explained: "They did an echo and they contacted Cardiff, and Cardiff said it was a life and death situation based on his echo of his heart. Every second counted. He couldn't go to Cardiff because they didn't have the heart surgery and ECMO there, he would have to go to Bristol.
"I gave Freddie a kiss and they put him on life support, I didn't realise that would be the last time that he would be speaking to me. They had to defib him in theatre. We were put in an ambulance to Bristol and I kept asking if he would be okay, and they said he's with the best team in the south west. It was the worst time of my life."
When they arrived at Bristol Freddie underwent an emergency surgery to place a temporary pacing wire in his neck. However over the next few days he deteriorated further. His kidneys and liver were now failing.
"Your body is really clever, saying I don't need to send blood to my legs and my arms first, and then it says I don't need to send blood to my kidneys and my liver, it just tries to preserve any oxygen to the brain. They said there was a chance we are going to lose him, we are losing control of the situation and he needed to go onto ECMO."
The youngster was placed on a brand new ECMO machine, the first person in the UK to use the technology and which has affectionately been named Freddie, for five days. Victoria said it saved his life. “It was the worst experience of our lives,” she said. “The thought of losing your child, it was all so scary. Freddie was a happy, healthy three-year-old before this. He was speaking, racing around on his balance bike and playing with his sister. He hit all his developmental milestones, and we just had no expectations he would become so seriously ill.
“He was so unlucky to fall so poorly with the viruses attacking his heart, however he is incredibly lucky to still be with us which is down to the ECMO support he received,” she added. “We were shocked with what was happening, but the team on PICU in Bristol were incredible from the moment we arrived. They are surrounded by the sickest children in the south west and south Wales but they were so reassuring and kind, even when explaining how sick Freddie was to us.
“They kept us so well informed and we really understood what was happening with Freddie’s care due to them explaining every step. We are so grateful that Bristol Children’s Hospital have such a professional team and can provide the lifesaving ECMO support to children when they need it. Without that, no doubt we would have lost our son,” she added.
ECMO works by taking blood out of a patient, cleaning the CO2 out of it and pumping it back in with pure oxygen. It allows the lungs and heart to rest and recover while fighting a major infection like the one which Freddie had.
But the treatment doesn't come without its risks. Dr Tom Jerrom, the lead ECMO expert at the children's hospital in Bristol, said: "ECMO support comes with risks and is only used for the sickest children when other treatments have failed or if the child is deteriorating too quickly. Sadly not every child will benefit from or can be saved by ECMO support. Cases such as this are however the reason that we do the jobs we do and we are all delighted so see Freddie’s continuing recovery."
After first falling ill in the middle of July, Freddie has now been moved back to Cardiff's Noah's Ark Hospital where he continues his recovery. When Freddie came off life-support he had lost his speech, ability to walk and couldn't eat solid food.
Now he is doing so much better and is able to sit up unaided, using a frame to help support him walk. Freddie has started to babble again, and his family are hopeful he will make a full recovery and be home just in time for Christmas.
At the moment, Victoria is spending most of her time by Freddie's bedside while dad Stephen visits every night to take over from Victoria to get some sleep. Each weekend Freddie's big sister Millie, who Freddie absolutely adores, visits, and they get to spend precious time together as a family. Victoria extended her special thanks to not only the hospitals involved in Freddie's treatment but also to the Ronald McDonald houses in both Cardiff and Bristol for providing them with a place to stay over the last several weeks.