Baby Raymond thriving despite his rare condition

Seven-month-old Raymond Dean who has a rare stomach condition called currariano triad. Picture: DENISE BRADLEY (Image: Copyright: Archant 2016)

He had been born with his hands first, his screams were too high-pitched and shrill, and he wouldn't latch onto Mrs Dean's breast.

Nurses, doctors, consultants, and surgeons began to descend on the delivery room, in the Norfolk and Norwich Hospital (N&N) – with the nervous parents waiting anxiously.

So grave did the situation become that within the first hour of his life Raymond was whisked away to the neo-natal intensive care unit after being allowed a brief cuddle with his mother and father James Dean.

Eight hours later Raymond, a tiny figure among the mounds of medical equipment, was put in an ambulance and sent to Great Ormond Street Hospital, London (Gosh).

Doctors there said they had never seen a condition like it.

Raymond is one of the few people in the world to be born with Currarino Triad – an exceptionally rare condition.

His symptoms included being born with a deformed rectum that stopped him pooing, an abscess on his perinaeum (the area between the rectum and testicles), and problems with his tailbone.

Or as Mrs Dean, 28, put it: 'He had plumbing problems.'

It was a life-threatening condition for Raymond who spent the next week undergoing major surgery and treatment at Gosh.

For childhood sweethearts Mr and Mrs Dean, who stayed in accommodation close by the hospital, it was not the start to parenthood they had imagined.

'It was terrifying and really difficult,' Mrs Dean, of Cutters Row, Norwich, said.

'After he was born I don't think we slept for 48 hours.

'In London we were getting naps but I kept expressing milk which we would run over to the hospital.'

The experience was extra strange for Mrs Dean, who works as a nurse in the neo-natal intensive care unit at the N&N.

It meant she went from nurse to patient, though she found her career-choice helpful in dealing with the drama.

'I could put my 'nurse-head' on,' she said. 'I felt very involved in his care at the N&N, and it was strange to see my friends and colleagues suddenly discussing my baby.

'For me it's a setting I was used to but it was completely alien for my husband. When I go back to work I will be a better nurse because I understand what the parents are going through.'

Mr Dean is an account manager at a bank in Norwich.

And thanks to the heroics of the doctors and surgeons Raymond was stabilised and referred back to the N&N, before being discharged a few days later.

Six months on Mrs Dean said he was 'thriving' – despite having to live with a stoma.

Doctors have improved his rectum which has given the family hope he will be able to go to the toilet normally when he is older.

'He has become such a cheeky and smiley baby,' Mrs Dean said.

'He loves going out and he sleeps well at night.'

She has started to blog about the story and Raymond's condition.

• To read Mrs Dean's blog visit www.thenicumummy.com

• Have you got a health story? Email nicholas.carding@archant.co.uk