I Just Shouted At The Doctor, 'You Need To Save My Baby!'

 

- Matilda Battersby

For Sarah-Louise Hall, the stares and ignorant comments from strangers now go unnoticed. She’s used to the attention her son Alfie, nine, draws.

Fed artificially and using a wheelchair, he’s not like other boys his age. But doctors are baffled by his condition and he still doesn’t have a diagnosis, because Alfie is one of thousands of children with SWAN (syndromes without a name). Each year, 6,000 UK children are born with undiagnosed genetic disorders, and their parents have to deal with all the trials of raising a sick child combined with a lack of clear treatment pathway.

‘People look at you like you’ve made up your child’s condition,’ says Sarah-Louise. ‘They say, “There has to be a name for what’s wrong with your child”. Of course. But Alfie’s syndrome is so rare it doesn’t have a name yet. It’s frustrating.’

Sarah-Louise, 43, first realised that something was wrong with Alfie immediately after his birth via a planned C-section on 1 July 2008.

‘The minute he arrived, I couldn’t hear a sound and I just knew something was wrong,’ Sarah-Louise recalls. ‘When my eldest son, Luke, was born, he’d been handed to me immediately. But, with Alfie, there were no cries. Everything went very quiet. I was saying, “Where’s my baby? Where’s my baby?” But they’d taken him away to be resuscitated.’

Sarah-Louise, from Northumberland, suffered a postnatal haemorrhage so, while Alfie was being helped to breathe, she was being worked on by surgeons.