Premature birth support is a labour of love for Dona

TINY fingers curled up into tight fists, Archie Robertson was battling for his life. Wired to monitors, tubes helping him to breathe, he lay silently inside the plastic incubator as the medical team worked desperately to get his heart going again.

His mother Dona held her breath and for the eighth time in the short life of her baby, hoped for a miracle. It came.

"It was the eighth time his heart had stopped but they got it going again. It was amazing really, but the doctors and nurses were amazing, and so was he – he fought every step of the way."

Archie was born 13 weeks before he was due to make his appearance last February. Dona was just 27 weeks pregnant when he arrived and he was rushed straight to intensive care at the Simpson Centre in Edinburgh's Royal Infirmary.

"He was three weeks old before I was allowed to even touch him," remembers Dona. "He was so small, just 2lb 6oz when he was born . . . he didn't even look like a baby really. I had him naturally, which I was pleased about as a caesarean was an option. But it was all such a shock. He wasn't ready, and neither was I.

"I was taking a team meeting at work and I went to the toilet and that's the last they saw of me. I was rushed to hospital because I was bleeding and I was 2cm dilated when I got there. That was at 26 weeks. I managed to put off going into labour twice, but he came at 27 weeks.

"I was really scared, absolutely terrified. I had had a miscarriage previously and so I was scared that was what was happening again. I wasn't going to let it happen. It turned out he came early because my cervix was weakened because of a loop biopsy for abnormal cells ten years previously. I was in shock afterwards and had to be treated for post-traumatic stress."

Archie spent 95 days in hospital, the first eight weeks in intensive care, then high dependency and finally the special care baby unit before he was allowed to go home to Muirhouse, weighing a healthier 7lb 5oz. It was during her vigil at his bedside – seven hours a day – that Dona, a sales manager with a major city insurance firm, became aware of two problems for parents in her position: that there was little support outside of the medical staff, and that at times there were too few nurses for the number of babies needing help.

As a result, the 33-year-old has just established the first Edinburgh branch of Bliss, a national special care baby charity providing support and care to premature and sick babies and their families. She has also spoken at the Scottish Parliament to raise the issue of nursing numbers for Bliss.

"When Archie was born, Bliss wasn't even in Scotland, just England and Wales. There was no support like that at all. When he was about nine weeks they appointed their first representative in Scotland. I thought I should do something – I wanted to help. The group has been going three months now and seven babies and their mothers attend," she says.

"It also helps me deal with the emotional trauma of it all – I need to help other people to help myself, that's how I cope. I'm also going to be spending two hours a month in the neonatal unit at Simpsons to help parents there, but the group is for when parents of premature babies are back at home.

"The main issue that concerns me – and all the mothers in the group – is that of nursing numbers for premature babies. I have nothing but praise for the nurses and doctors who helped us, and we are so fortunate that we have such a facility on our doorstep.

"In intensive care, it was one-to-one care for Archie and the other babies, but when we moved to high dependency you could see the nurses were stretched. The recommendation is one nurse to two babies, but it was more like one nurse to five babies at times.

"When nurses were needed in intensive care, they would go from high dependency and so other nurses would come in. It was like robbing Peter to pay Paul. The staff never let on they were stretched or stressed, but there should be enough nurses to give a level of care that the parents feel comfortable with."

Dona and her husband Gordon are now well used to life with Archie, now 14 months old. "It's been difficult for us all which is why the group is so important. All parents are welcome though, at the moment, it's just mums who are attending. There's very little support for fathers. Gordon was so strong that it's only now he's beginning to suffer after-effects.

"It's not something you get over. It's such a massive shock because it's not natural or normal, which is why you need all the support you can get."

'Trying to change Sam's nappy in an incubator was some job'

SAM Craig looks as healthy and happy as any other five-year-old – yet his arrival was less than straightforward.

His mum Camille went into labour at 29 weeks after her waters broke, and so she and her husband David turned up at the Edinburgh Royal Infirmary. "But either because of lack of specialist staff or beds there was no-one to look after her so she was transferred to the Southern General in Glasgow," recalls David.

"She was given steroid injections to help Sam's lungs develop, because he was obviously going to be born quite prematurely.

"We thought that she would give birth there, but because the labour slowed she was sent home and we were told to attend St John's in Livingston if anything changed."

The Craigs were home in Eliburn, West Lothian for just days before Camille, a marketing officer at Donaldson's College, started her contractions. "She was 30 weeks by now, so we went to St John's, but because of a lack of specialist equipment they can't take babies under 32 weeks, so she had to be transferred again.

"Staff started phoning round hospitals trying to find a place for us. We were told it could be Belfast, Newcastle or Sheffield."

Eventually a bed was found for Camille, then 31 years old, at the Princess Royal Maternity Hospital in Glasgow and Sam, pictured left, was born weighing just over three pounds.

"He was in intensive care for a week. I remember trying to change his nappy in an incubator – that was some job, especially as you can't let them pee on any of the wires.

"But once he hit 32 weeks, a cot became available in St John's Hospital, so he was moved closer to home.

"Over the course of a week we were in four different hospitals. It was pretty stressful, and did nothing to help an already stressful situation," says David.

"With the best will in the world babies should be born as close to home as possible. Some end up much further afield than we did and that puts a tremendous strain on families.

"There are issues with lack of trained staff, lack of equipment and lack of beds. Money needs to be ploughed in to resolve this."

David, 36, is now a Bliss trustee and chair of the Scottish fundraising committee. "I found one of their pamphlets when were in St John's and I found it so helpful when we had so many questions. I became a trustee because I do feel parents of premature babies need to have as much information and support as possible."

The couple now have another son, six-month-old Harry, who was only three days early. "That was all much more straightforward and normal," says David.

"But we still want to give something back, and there's a lot of work to be done through Bliss."

Call for better care for mothers and babies

AROUND 8,000 babies are born sick or premature in Scotland each year, and baby charity Bliss is campaigning on two fronts: nursing numbers and "inappropriate" transfers of mums and babies from hospital to hospital.

According to Bliss, one-to-one nursing care is "an essential standard" laid down nine years ago by the British Association of Perinatal Medicine.

The BAPM standards say that the ratio should be: intensive care – one nurse to one baby; high dependency – one nurse to two babies; special care – one nurse to four babies.

"Thirty-five neonatal units already meet the recommended minimum standards, which proves that it is possible," said a spokeswoman. "But a severe shortage of specialist nurses and properly trained doctors in neonatal services means that babies are not getting the one-to-one nursing care they deserve."

Bliss also claims that last year more than 1,500 babies were subject to inappropriate transfers in Scotland because hospitals did not have the space or staff to care for them.

According to the Scottish Neonatal Transport Service 2009 Review, the service is working at 150 per cent of its planned activity, and an estimated extra 100 transfers this year will increase demand.

The Scottish Government last year reviewed neonatal services, but while its report recommended the full adoption of one-to-one care and the development of regional networks of units to better plan services, funding has only been provided towards establishing the networks.

Andy Cole, chief executive of Bliss, said: "Unnecessary long-distance transfers are still occurring, putting enormous financial, practical and emotional strain on families. We call upon the Scottish Government to act swiftly upon the recommendations outlined in last year's review."

The charity has the backing of Livingston SNP MSP Angela Constance. She has called for better support for families whose babies are transferred to neonatal units far from home, including financial support and accommodation.

However, NHS Lothian said it already meets the BAPM recommendations. Dr David Farquharson, clinical director of women and children's services, NHS Lothian, said: "High-dependency babies in NHS Lothian receive care based on the ratio of one member of staff to every two babies."