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Rafe's story

8th April 2017

Stephanie’s son Rafe entered the world early, already fighting a severe bacterial infection. He spent months in hospital but has proved himself a fighter and is amazing doctors by hitting all his milestones. Proud mum Stephanie, from High Wycombe in Buckinghamshire, tells their story here

Rafe's story

“Our gorgeous boy Rafe made a very sudden and dramatic arrival five weeks early on the 5th December 2016 - which we now know was my body’s way of trying to protect him.

While it wasn't detected then his body was already fighting a severe bacterial infection.

“Five days later on the 10th December we noticed something was a little off with our son. Nothing major we said, probably just a cold - a funny grunting noise down to what we thought was maybe just a bit of a blocked nose. But being a slightly neurotic new mother we took him to our local A&E. A few hours later he was on a ventilator fighting for his life.

“On the 11th December the Southampton emergency medical retrieval team travelled all the way to our local hospital in Bucks to safely transfer our precious boy to the John Radcliffe specialist paediatric intensive care unit in Oxford.

Kept our boy alive

“For four days, the incredible doctors and nurses in PICU quite literally kept our boy alive. But on the second day, they broke the news every parent dreads – ‘your son has bacterial meningitis’. For the next three months our boy was given a cocktail of ‘Domestos-like’ antibiotics to try and rid his brain of the rare and potent bacteria eating away at his frontal lobe. Paralysis was mentioned. As was cerebral palsy.

“After two months we made it home for a few weeks before he developed hydrocephalus - a common but cruel side effect of meningitis. Another stay in hospital resulted in a shunt being fitted to control the increasing fluid and pressure in his brain.

“Every step of the way our gorgeous boy has fought hard. Proving the doctors wrong he is currently hitting all his milestones - and moving all his limbs much to the doctors’ amazement.

Relied solely on intuition

“When we took our son to A&E on that first day, we relied solely on intuition. There were none of what I thought were the obvious signs of meningitis. He had no rash. No temperature. But deep down I knew there was something more going on than a little cold. I now know that the grunting sound is a very common sign of infection in newborns and just wish more people knew about this. Picking up on it when we did quite literally saved our boy’s life.

“We don't know what the future holds for our son in terms of continued development ... but whatever it is he's proven he's strong enough to handle anything and we are so incredibly proud of him.”