When Shelley Marsh’s “miracle baby” was born 13 weeks premature she weighed no more than a bag of sugar.

Mrs Marsh was left “petrified, terrified and afraid” after giving birth in 2004, but the experience has inspired her to start a national campaign for better communication between parents and doctors.

Her daughter is now 11-years-old, and Mrs Marsh has made a short film about her ordeal and is preparing to work with trainee doctors to help them understand what families like hers go through.

Recalling her daughter’s birth, she said: “She was so small that I could hold her in the palm of my hand.

“I felt mixed emotions – joy that my baby girl was here, but a sickening sense of fear because she became critically ill.”

After her daughter was born at Queen Charlotte’s Hospital in Hammersmith, London, Mrs Marsh spent the next year visiting her in neonatal and paediatric intensive care units in Watford and Cambridge as she battled a serious intestinal condition that afflicts premature babies.

She said: “You would see other people’s children die. It was heart-breaking.

“We were told to prepare ourselves for the fact our daughter might not make it.

“My daughter was in intensive care for a year. I was so petrified, terrified, so afraid that I could not speak. I remember one of the nurses talking about moving her to "scaboo" when she was stronger. I thought, ‘what a cute name for a nursery’.

“But then it finally dawned on me that SCBU is not a cartoon character – it’s the special care baby unit.”

Mrs Marsh, who is the CEO of an education charity, was in and out of Watford General until her daughter turned three and said the staff saved the girl’s life more than once.

Mrs Marsh, who lives in Aldenham, praised the “tremendous” staff who supported her through her pregnancy and in the first years of her daughter’s life.

She said: “The staff there were a fantastic support. They were very, very stretched but they still gave us the best level of support they could.

“Doctors can’t believe she’s here today and she’s a happy, vibrant girl. She has one large scar across her stomach, we refer to it as ‘the zip that saved her life.’ “She’s our miracle child.”

Her film, made with charity Fixers, describes her ordeal, and she hopes her work with trainee doctors will help them deal with often distraught families.

She said: “While medical staff do an amazing job, I think it’s important for them to have the best understanding they can of what families are going through.

“It will help if we could improve communication because we arrived in a place with no guidebook, no manual and no comprehension.

“Doctors are doing a brilliant job, saving lives every day. The film's purpose is to support medics in their communication, empathy and understanding of the families they help.”