A POWYS family are hoping they will be reunited in time for Christmas after their toddler son was struck down by a slew of viruses that left him on life support.
Freddie Julian had been a normal “happy, healthy” three-year-old, who loved riding his balance bike, before becoming unwell in June.
Freddie, from Brecon, contracted several common childhood viruses at the same time, which in isolation might not have proved so serious. However, when it became clear his life was in real danger, doctors at Bristol’s Royal Hospital for Children treated him using an ECMO machine, its latest piece of high-tech equipment – which was seen as his last hope.
Freddie was the first person in the country to be treated with the new life-support machine that took over the job of his heart and lungs.
The machine, which had only just been delivered to Bristol’s Royal Hospital for Children, saved his life.
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“We were told on numerous occasions we’d lose him,” said Vickie Julian, Freddie’s mum, who rushed him to Merthyr Tydfil’s Prince Charles Hospital on June 20.
“Originally it was just a virus, but it got worse. He wasn’t eating or drinking, his arms and legs were freezing and his eyes were rolling back in his head.”
The problem was, little Freddie was being attacked my multiple viruses, including pneumonia and slapped cheek syndrome.
“Luckily a cardiac paediatrician was there, and they told us how poorly Freddie was,” said Vickie.
“The watch team there said it was a life and death situation where every second counts.
“They used a defibrillator on him in Merthyr, which stabilised him, then we went to Bristol. We got told his heart was not functioning at all and a virus had got into his system and started attacking it.”
By Monday, Freddie had deteriorated. “We were told there was nothing they could do,” said Vickie.
“A surgeon told us they were losing control of the situation. The ECMO machine was his last chance.”
An ECMO (Extracorporeal Membrane Oxygenation) circuit machine takes blood out, removes the carbon dioxide from it and returns oxygen-rich blood to the body, circulating it when the heart and lungs don’t work well enough.
“Both lungs collapsed while on life support, his kidneys and liver shut down and they reconstructed his blood vessels,” said Vickie.
“He suffered from delirium and withdrawal from all the medication; it was horrific to see him go through that.
“Had we not gone to Merthyr when we did we would have lost him.”
The machine gave Freddie’s heart and lungs a rest, while doctors tackled the infections threatening his life.
After three-and-a-half weeks on life support in Bristol, Freddie was transferred to Noah’s Ark Children’s Hospital for Wales, in Cardiff, in mid-July, where he remains.
It is unclear when he will be well enough to return home and rejoin his friends at Mes Bach pre-school, in Llangors. It’s only in recent weeks that Freddie has started babbling and sitting up independently, but the family’s goal is a homecoming in time for Christmas.
“He’s now being rehabilitated, to try and get him back to the little boy he was before, or close to it,” said Vickie.
“He was a happy, healthy three-year-old, racing around on his balance bike and playing with his sister.
“We’re just hoping he will be able to talk and walk again, but it’s going to be a long process, because he was on life support for so long.
“His poor body is still trying to get his liver, kidneys and heart back functioning fully.
“We’re not sure when we’ll be able to bring him home yet. Our goal is to spend Christmas together.
“We’ve got a daughter who’s five, so we just all want to be a family again.”
Lawyer Vickie described the last few months as a “nightmare” for her and husband Steve – a self-employed scaffolder who works during the day while she sits at Freddie’s bedside – as well as Freddie’s big sister Millie
“It makes me realise that when we needed our healthcare system, it was there for him,” said Vickie, who is keen to raise awareness of the danger posed by viruses to other parents.
“We were so incredibly lucky the medical teams made the right decisions at the right times.
“ECMO was the last chance for him. He definitely wouldn’t have made it if he’d had to go another hospital.”
The lead ECMO expert at the children’s hospital is Dr Tom Jerrom, who said the machine comes with risks and is only for the very sickest children, for whom other treatments aren’t working.
“Dr Tom knelt with us and was crying when we left Bristol because they see so many children who don’t make it,” said Vickie, who is also keen to sing the praises of everyone who helped her little boy – from the medical teams in Merthyr, Bristol and Cardiff, as well as Ronald McDonald House, which she has called home for nearly three months.
She added: “Steve goes to work in the day then comes and sleeps next to Freddie at night.
“I’m with him all day then sleep at Ronald McDonald House at night, which has been a home away from home.”
The ECMO machine in Bristol has now been named ‘Freddie’ due to the fact he was the first child to use it.
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