More premature babies surviving at Royal Gwent

Last week we reported on Esme Poulson, a little girl born almost four months before her due date, at 24 weeks. Esme beat the odds after she was given just a one per cent chance of survival.

But this incredible survival story may be representative of a wider trend in neo-natal care.

Figures from Newport's Royal Gwent Hospital show that many more premature babies are surviving to go home than was the case 20 years ago.

We visited the special unit for babies when consultant Siddhartha Sen showed us statistics indicating a dramatic rise in the number of premature babies surviving to go home.

He said: “I started 30 years ago. It’s unrecognisable even from 20 years.” He has worked in the Royal Gwent for 10 years and described a “quantum” change in treatment standards.

The figures seem to bear this out. As it is rare for babies to be born very early, it’s difficult to extract definite conclusions as there isn’t enough data, but the trends are definitely positive.

In the years 1991 to 1997, the cumulative survival rate of babies born at 25 weeks admitted to the unit was just 45 per cent, less than half. The equivalent figure from 2005 to 2012 was 84.1 per cent, almost double the number of babies surviving to go home.

Similarly, more babies born at the very earliest edge of viability outside the womb, 23 weeks, survived to go home from 2005-2012: 41.2 per cent of babies admitted to the Royal Gwent. In 1991-1997, it was just 30 per cent.

However, babies born this early are clinging to life. In 2004, just one out of nine babies born at 23 weeks at the Royal Gwent survived to go home. Less than half of the 41 babies born this early from 1991- to 2011 survived – just 36.3 per cent.

The babies in the intensive care unit looked so fragile in their incubators, holding on to tubes or blankets. We didn’t want to cough or speak to loudly for fear of disturbing them. ‘Normal’ babies are often rocked to sleep with lullabies, but the background music in the unit is of beeps from machines monitoring each child’s condition.

One of the smallest babies in the unit is Sebastian Hedges, who was born at 26 weeks old, more than two months before the nine months babies usually have to prepare for the world outside the womb. He weighed just 526 grams, less than a bag of sugar.

Aged 80 days when we saw him, he weighed 1.534kg and is doing better although he still needs to sleep in an incubator. Hopefully he will soon he able to go home, with his brother Joshua, now three, who was also born prematurely and helped by the Royal Gwent’s neo-natal unit.

For babies born at 30 weeks, still more than a month before a healthy pregnancy is expected to come to an end, the outlook seems good. The cumulative survival rate in 1991 to 1997 was 97.4 per cent, while from 2005 to 2012, it rose to 98.2 per cent. From 1991 to 2011, 267 out of 274 babies born at 230 weeks survived to go home.

But Dr Sen emphasised that going home is not the end of the story. Many babies born prematurely will suffer disabilities all their lives, some with minor problems and some with major conditions like cerebral palsy and difficulties with breathing and feeding.

He said: “These babies are extremely high risk. Nowadays, the expectation for parents is because one baby survives at 23 or 24 weeks, all babies survive. That’s not the case. At 24 weeks, the long term outcome is not very good.”

Babies born under 26 weeks have a 50 per cent chance of disability, even if they are able to go home, and all premature babies also have a greater risk of infection.

Around 85 per cent of babies admitted to the specialist babies unit will go home with only mild disabilities or no lasting effect at all, but 15 per cent will be moderately or severely disabled, with conditions such as cerebral palsy. Problems with spelling and maths are more common in children born prematurely.

Statistics show that as well as a higher percentage of babies surviving, the number of babies born prematurely appears to be rising. 71 babies born at 30 weeks were looked after at the Royal Gwent from 1991 to 1997. In the period 2005 to 2012, that figure rose to 112.

There are varied reasons for this increase, but Dr Sen explains that it is partly due to the increase in babies conceived via IVF (in vitro fertilisation). This often leads to twins or triplets, who have a higher chance of being born prematurely, but also the fact of IVF itself may lead to a higher incidence of premature birth as it is an artificial method of conception.

Dr Sen said the unit was currently waiting to admit two babies who they didn’t have space for. He added: “That’s a problem throughout Wales.”

Parents have 24 hour access to the unit and when we visited many were sitting next to cots, holding the hands of their children and hoping they would soon be able to take them home.

Although so many of the babies in the unit are high risk, there’s the same feeling of joy at new birth coming into the world that there would be on an ordinary maternity unit. Staff are clearly dedicated to their work and to giving the best standards of care, and despite negative headlines about many aspects of the NHS recently, staffing ratios are good.

Acting senior nurse Clare Payne has worked in Gwent neo-natal units since 1995 and says it’s more than just a job.

“If you like the neo-natal unit you tend to stay here for years. We have lots of nurses who come here as students and think, “This is the job for me”. Then they’re with us until the end of their careers.”

She said the expectation now is that nurses working in intensive care will be looking after just one baby. In the high dependency unit, for babies more stable but still needing to be monitored, the staff ratio is one nurse to two babies. In the growing nursery, for babies who often don’t need an incubator any more, the ratio is one nurse to four babies.

Eight consultants and more than 100 nurses work between the units at the Royal Gwent hospital and Abergavenny's Nevill Hall hospital.

They monitor the babies and also help to reassure parents and explain to them their child’s condition. As the unit is so high-tech, parents can feel distanced from their children as they can’t take them home, cuddle them and breastfeed them without worrying about their condition.

To help with this, the unit has bedrooms parents can stay in with their babies before they take them home, to get used to being with the child overnight. They also encourage parents to have “kangaroo care”, when a baby is tucked up under mum or dad’s clothes like a baby in a kangaroo’s pouch, to get skin to skin contact. This is proven to help with bonding.

Although many babies are able to leave after just a few days or weeks, some need to stay for much longer. One baby was in the unit for seven months, so kangaroo care is even more vital in long stays such as this.

Premature babies are at high risk of breathing problems as their lungs are not fully developed yet. They may be put on a CPAP machine, which gently blows into the nostrils to keep the airways open, or a ventilator if they are seriously ill.

Elin May, one day old, was being treated with phototherapy for jaundice. The blue lights help the body to remove bilirubin which gives the skin its yellow colour.

Her father Jonathon Collier, 45, from Risca, said: “The first night (my wife) was here practically all night, all day and all night last night. I went home, showered, got changed and came back.”

Nurses said Elin could probably stop the treatment later that day, but might have to start the phototherapy again tomorrow.

But treatment has come on in strides since twenty years ago. One, a common way to treat a mother who is likely to have a premature baby, is to give her steroids. This can delay labour, potentially gaining a few crucial weeks for the baby to develop in the womb.

Another revolution in care is the use of surfactant, which can be given to help babies to breath properly. Very premature babies often do not produce enough of this substance, which helps the lungs to expand properly when the infant makes the transition to breathing its own oxygen. The substance is given to mothers before delivery to hasten to production of surfactant in the child’s own lungs. If necessary, it can be given to the infant after birth as well.

Many of the babies in the neo-natal unit have to fight to begin their lives, but, but the positive stories outweigh the sadness.

Alex Connors, 27, was sitting with her baby Ruby Ash, born just 24 hours earlier and put on a CPAP machine to help her breathing as well as being placed in an incubator to keep her body temperature up. Alex said: “It was a bit of a shock. We’re dealing with it day to day. She’s lots better than she was.”

Now wriggling round in a cot in a pink babygro, Ruby looked much better and should be able to go home soon.