Wilfred's story

Wilfred is a very busy toddler, says his mum Imogen: “He’s active, cheeky and inquisitive, always on the go. He’s very protective of his baby sister Edith when we’re out and about. And he takes everything in his stride.”

For Imogen and her husband Euan, their son’s sunny nature and enjoyment of family life are especially precious because, born extremely prematurely and then suffering from dangerous bowel disease necrotising enterocolitis (NEC), they feared they would lose him.

Imogen’s pregnancy was progressing smoothly and all seemed well, until labour pains started without warning more than three months too soon.

Medics tried desperately to slow Imogen’s labour, but baby Wilfred was born at just 25 weeks and four days, weighing a tiny 2lb 6oz.

“I was in denial more than anything,” Imogen reflects. “I kept thinking, he can’t come, he can’t come. But your body knows, and in the end it was all very quick.”

Wilfred, who was cared for in the Neonatal Intensive Care Unit, was tube fed and needed a ventilator to help him breathe. Tests showed that, sadly, he had suffered a bleed on his brain, leading to irreversible brain damage. And within days of his birth, doctors feared that the potentially deadly bowel disease NEC had taken hold.
 

Premature babies are particularly vulnerable to this dangerous condition and swift treatment is vital.

Aged just six days, Wilfred endured surgery with 25cm of his bowel removed and a stoma bag fitted to manage his body’s waste.

It was a deeply distressing time for new parents Imogen and Euan: “It was awful – first we thought he’d die at birth, then he was well, and then he got NEC. You don’t understand the severity until it’s happened.”

After four months in hospital, and a further operation to reverse his stoma, little Wilfred was finally able to go home, weighing 7lbs.
 

Now aged three, Wilfred has been diagnosed with cerebral palsy but thankfully is mildly affected.

Wilfred is a little behind his peers in terms of speech and vocabulary, but is very chatty: “He’s a happy, determined little character and takes everything in his stride,” says his proud mum.

Aware of Action’s work funding studies to help prevent premature birth and protect babies from NEC, Imogen says: “This work is really important. There’s lots of support available when you’re in hospital but actually you want to know that research is there to help ensure that people don’t have to go through premature birth in the first place.”