Family’s years of turmoil over boy’s sickness
CONDITION HAS STAYED A MYSTERY SINCE ALFIE WAS A BABY
Reporter LITTLE Alfie Hall was 48 hours from death when his distraught mum marched into hospital and shouted for someone to “save my baby”.
Sarah-Louise had known there was something wrong with her son from the moment he was born, and after months of infections and failed feeding attempts she was at her wits’ end.
Rushed from Northumberland’s Wansbeck Hospital to Newcastle’s Royal Victoria Infirmary, Alfie was fitted with a feeding tube by medics who told Sarah-Louise she had been 48 hours from losing him altogether.
The tot, from Ellington, was examined by a “long queue” of doctors, but not one was able to say what was wrong with him.
Now nine years old, Alfie’s condition has left him at times unable to walk, eat or even feel pain in the same way as most people – but still no one knows what it is.
He is one of 6,000 ‘SWAN’ (‘Syndrome without a name’) babies born every year – children who have never had an official diagnosis, leaving their parents to face an unknown path.
Sarah-Louise, 43, said she knew “immediately” that there was something wrong with Alfie when he arrived via a planned C-section on July 1, 2008.
“There was no noise. When I had my eldest son Luke three years earlier he came out screaming, but this time everything was so quiet,” she said.
“I kept saying, ‘Where’s my baby, Where’s my little boy?’”
Alfie was taken away to be resuscitated, while Sarah-Louise was also treated for a post-natal haemorrhage.
After several days apart while Alfie struggled with breathing problems, Sarah-Louise and her husband William, 45, were allowed to take Alfie home.
Sarah-Louise, an assistant practitioner for Northumbria Healthcare NHS trust, said: “The doctors said it was failure to thrive after a traumatic C-section. When we first got home I thought I’d hit the jackpot with Alfie – he didn’t feed much and slept all the time.
“Little did I know they were warning signs that something wasn’t right.”
When Alfie started losing weight instead of putting it on and still refused to feed, Sarah-Louise took him back to Wansbeck Hospital in a panic.
“I just shouted, ‘You need to save my baby, he needs help.’”
“They put a call in to the RVI and took us to the children’s unit.
“There was a huge queue of doctors that came to see him. Noone could diagnose him, but at least he started to get the care he needed.”
Alfie was fitted with a feeding tube and started to put weight on. He was also introduced to the charity SWAN UK and the genetics team at the Centre for Life.
Sarah-Louise said: “He’s been under their care for nine years now but there’s still no diagnosis. They’ve been scratching their heads all this time.”
Alfie has had numerous other conditions diagnosed over the years, including autism and global developmental delay.
But his symptoms are so confusing and changeable that the cause of his various illnesses cannot be identified.
His mum said: “He uses a wheelchair for distances and he doesn’t feel pain in the same way we do – someone applying a lot of pressure to him he finds quite pleasurable. “He had his feeding tube removed three years ago but he’s still very fussy, and he has a sensory processing disorder so he prefers foods that are very spicy and hot. He would have curry for breakfast if he could.” Despite all his setbacks, Alfie has grown into a cheeky nine-yearold, with an excellent sense of humour and a large collection of toy vacuum cleaners. “He always finds the positives in everything he does, but not having a diagnosis is massive,” Sarah-Louise said. “Without it you’re not put on the right pathway. “It’s heartbreaking not knowing whether he’s going to get worse.” Sarah-Louise is calling for the SWAN tag to be recognised as a medical condition in itself. She said: “What am I supposed to tell the Department of Work and Pensions when he’s older and I’m applying for his benefits? When it comes to things like trying to get him into a specialist school, the lack of a firm diagnosis is huge.” Sarah-Louise Hall