'We just didn't know how to be a mum or dad'
More than one in 10 babies in the UK are born prematurely - that is to say, delivered before 37 weeks, compared with a full-term pregnancy of 40 weeks. Babies born as early as 22 weeks can survive.
Now, a charity backed by leading medical organisations, has produced a DVD aimed at helping parents - and the clinicians - caring for these babies.
Vicki Ling's first contact with her newborn son was "looking at him in a plastic box".
She had given birth to Jacob at 27 weeks.
"He nearly died at birth," she says. "I can't explain what it's like to have a baby so early. You don't know what the future holds."
Even the simplest things are a challenge. "You don't know how to feed them, how to wash or change them - you don't even know how to hold them.
"We just didn't know how to be a mum or a dad."
But then she was allowed to hold her son in skin-to-skin contact, even when he was spending most of his time in an incubator, so-called "kangaroo care".
She was also able to produce breastmilk for Jacob, and was shown how to bathe him wrapped in a muslin cloth to help him feel comfortable.
Her story features on a DVD aimed at both parents and clinicians caring for premature or sick babies.
The "Small Wonders" DVD has been put together by the Best Beginnings charity, which worked with six medical Royal Colleges, Unicef and a range of other organisations involved in child health.
Vicki says she wished she'd had the DVD when she gave birth. "I know if I'd had the opportunity to have seen someone on their journey when Jacob was born I would have felt so much better. This DVD is going to improve people's lives."'So vulnerable'
It follows 14 families, treated in 10 hospitals, from birth to their child's first birthdays.
End Quote Saima Parveen, mother of Qais born at 25 weeks
When he's in the incubator and I hold him or I'm touching him, there's that barrier. But this is the way I like it”
In a series of 12 films, it shows the different levels of care a baby might receive, and the kind of equipment that might be used.
It also discusses birth, a baby's first hours, breastfeeding and holding a premature baby, all the way through to taking them home.
Alison Baum, the founder and chief executive of the Best Beginnings charity, said: "Our research told us that parents of premature or sick babies feel understandably overwhelmed by their experience.
"When their baby is so vulnerable they can feel that only the medical staff are able to provide the care they need, when in fact they themselves can have a vital role to play."
Over 400 "champions" in 155 of the 171 English trusts have been trained to use the DVD to educate other members of the team about what parents need and experience.
It will also be given to all parents of premature and sick babies in the hospitals currently involved.
In three hospitals, King's College Hospital, Guy's and St Thomas's and the Liverpool Women's Hospital Trust, staff will evaluate how using the DVD affects outcomes.
Dr Tim Watts, a consultant neonatologist at Evelina Children's Hospital at St Thomas's is one of those who will oversee the evaluation.
He said: "Part of this is about making sure parents know how they can get involved.
"But we are only supporting the babies for a really brief period of their lives. They go home with their parents, who are going to be there for the rest of their lives.
"It's about getting them involved early so they're confident and accomplished parents."
Last year, a survey for the Picker Institute for the charity Bliss of over 9,000 parents, found that the number of prospective parents of premature or sick babies who said a member of staff had talked to them about what to expect after the birth varied from 17% to 76%.
And the number who said staff arranged the baby's care around their visits ranged from 34-92%.Getting involved
Saima Parveen, who also took part in the DVD, gave birth to her baby Qais at 25 weeks of pregnancy.
"When I was in labour, lots of doctors and nurses were talking to us about what to expect," she says. "They were giving us facts and figures, and the percentage chances of survival.
"I can just remember trying to block everything out, thinking this is not supposed to be happening."
Qais is now doing well, although he does have some developmental delay in his speech and isn't walking.
Saima says it can be hard to see other children starting to walk and talk.
"But after everything he's been through, well, he'll do it in his own time."
Vicki says she treated Jacob with kid gloves when she first took him home, but her mum made her see the need to treat him like any other baby.
"He's nearly two now, and is doing very well. His motor skills are quite behind - but he still answers me back."