'My Luke is living proof that not all babies born at 23 weeks are the same'

THERE'S a pile of brightly- coloured building bricks piled high on his granny's lounge carpet, and Luke Baird has been carefully crafting them into what he has decided to call his "Surfceptor".

Ask him what exactly a "surf-ceptor" might be and he throws you an almost disgusted look before patiently explaining that - obviously - it's a flying thing with a place for a Lego man to sit and it goes "whoosh".

Then Luke is on his feet, he's racing around the front room of the Gilmore Place house, crawling over the yellow sofa and launching himself on to a beanbag as the pilot plunges to earth accompanied by a loud "Argh!" from the Surfceptor's creator.

Luke is every bit the typical, high- energy, Lego brick-addicted six-year-old boy. Yet he's the lad who almost never was.

He was born on the cusp of what is deemed viable, a 1lb 6oz barely formed scrap of translucent flesh, who arrived just 23 weeks into mum Emma's pregnancy: a week earlier than the legal limit for abortion, just a week beyond what would be termed a miscarriage, at a stage which some argue babies should simply be allowed to die.

His was a hugely traumatic arrival but, as it turned out, Luke was the lucky one. Twenty minutes earlier, his twin brother Zac had arrived, black and blue from the shock of a breach birth, his tiny body was simply too immature and fragile to handle the world he'd entered.

Today he rests at a carefully tended plot in the poignant and peaceful surroundings of Mortonhall's Rose Garden.

"It is just the saddest place in the world," says Emma, 38. "You look around and realise that these are all babies, tiny babies, and it's heartbreaking. I found it hard to visit at first. Now I find it comforting to know that Zac is there."

Two brothers, identical weight, born minutes apart at a stage when neither might have really been expected to survive. That one did - and is remarkably unscathed as a result - is, insists Emma, surely all the proof needed to convince doubters that the unique group of "23-weeker" babies like Luke should not be left to die.

Yet leading NHS official Dr Daphne Austin has argued just that, sparking controversy by suggesting that the 10 million spent every year battling to help babies born at 23 weeks to survive could be much better invested.

Last night, the New Zealand trained West Midlands consultant, whose role is to advise health trusts how to spend their budgets, spoke out on the BBC Two documentary, 23 Week Babies, The Price of Life, warning that survival rates are so poor that it would be more sensible to allow them to die.

"If it was my child, from all the evidence and information that I know, I would not resuscitate," she said, adding: "We are doing more harm than good by resuscitating 23-weekers. I can't think of very many interventions that have such poor outcomes."

Guidelines state that doctors should not try to resuscitate babies born under 22 weeks, their bodies too underdeveloped to stand a realistic chance of survival, they are regarded as "miscarriages".

Babies born between then and 25 weeks are placed in intensive care. Of every 100 born at 23 weeks, only nine will survive.

Some argue those who survive usually face lifetime disabilities, anything from serious conditions like hydrocephalus, cerebral palsy, development delays, to neurological disorders and seizures.

Their very immaturity leaves them susceptible to infections and ailments which, while less serious in healthy babies can be fatal for a premature infant. Even the treatment they receive can have a negative impact, such as the oxygen which is so vital to their survival but which can affect the nerves behind the retina and cause eye problems.

As Luke gazes up at Emma, the impact of his incredible fight for survival is plain to see. The oxygen that helped him survive also left him with slight eye damage - he has a squint and his peripheral vision is affected.

"He has to turn his head to look at things and he has what's called "hypermobility", which could have nothing to do with being premature. It just means he's very bendy, it takes a lot of effort for him to sit up straight and he's more inclined to slump forward so he sits on a special cushion at school," explains Emma. "But otherwise he's absolutely fine."

Her pregnancy had been progressing well when, out of the blue, at 23 weeks, she went into labour.

"I had some backache one night and didn't feel well. It got so uncomfortable that I called the hospital and was told to come in. By the time I was examined, I was seven centimetres dilated - I'd gone into labour," she recalls.

Desperate efforts to halt labour failed and a few hours after arriving in hospital, Emma was giving birth, first to Zac and then to Luke.

"It was pretty grim," she nods. "Both were breach babies and I was being told to push them out but all my instincts were saying to do everything I could to keep them in."

The moments after birth were deeply traumatic. "As soon as Zac was born he was put into a plastic bag to help keep him warm and taken away," remembers Emma. "No-one was making a sound except for me.

"Luke was born still in his membrane sac and he, too, was taken away. At some point someone brought in Zac and told me he was dead.

"He was wrapped up in a blanket, I held him and it was very surreal. I was thinking 'I've got a dead baby and one who might not live'. I was physically sick."

She was taken to see Luke, and gazed on a tiny bundle barely larger than her hand, surrounded by tubes, wires and alarms in a stiflingly warm neonatal ward.

"His skin was translucent," she remembers, "and when I touched his little foot, he flinched like he was in pain. I didn't think he could possibly survive."

However, Luke fought hard, amazing Edinburgh Royal Infirmary's Special Care Baby Unit staff with his determination to live. After three weeks, Emma was finally allowed to hold him in her arms - a poignant moment as she battled with the grief of trying to plan Zac's funeral.

"I think I was in shock immediately afterwards," she remembers. "I came home from hospital after just a couple of nights because I couldn't bear to be in a room at the end of the maternity ward surrounded by mums who had just had healthy babies.

"I remember the hospital staff asking about a post mortem for Zac and saying it might help them understand what happened if they could take his brain. It was two days after he was born. Then trying to organise Zac's funeral became tricky because Luke would be up one day and down the next."

Thankfully Luke's condition stabilised, giving Emma hope for the future and time to lay his twin to rest at Mortonhall Rose Garden.

Finally, after 15 weeks in hospital, Luke was allowed home.

"He weighed less than 5lbs," recalls Emma. "I got him home a week before what should have been his birth date - he was born on August 23, but his due date was December 16 - and I carried him all the time in a little papoose because I didn't want to let him go.

"I was terrified to take him outside in case he caught an infection, a severe cold could be fatal to a baby like Luke."

Soon, though, Luke was able to cope without oxygen. As the weeks, months and years passed by, he has develioped into a lively, confident boy who dreams of being a fireman and loves to build "Surfceptors".

As she watches him play, Emma fears a blanket rule against resuscitating children like him would be a dreadful mistake.

"The argument is that only one per cent of babies who survive being born at 23 weeks make it home without any impairment and the rest are disabled," she complains. "Luke is classed as disabled because he has a squint, but it doesn't impair his life in any way.

"Surely the way to decide what to do for these babies is case by case, not by blanket rules? It should depend on their condition at birth.

"While Zac had no chance of survival, Luke did - that's proof not all babies are the same."

Emma has pledged to keep baby Zac's memory alive. Luke knows of his twin and what happened when he was born.

"I speak to him about it all," explains Emma, who split from her partner before the drama of the twins' birth. "He has an obsession with skeletons, and he asks whether the skeleton bones look like Zac - he doesn't really understand just now, but it's important he knows what happened.

"He is proof that babies born at 23 weeks are worth saving."

CUSP OF SURVIVAL

The 23rd week of pregnancy is a vital point, regarded as the very cusp of survival. According to premature baby charity Bliss, babies born at 23 weeks have a 17 per cent chance of survival compared with those born just a week later who have a 39 per cent chance.

"Sadly, most 23-week babies will not survive, but a significant number do," says charity chief executive Andy Cole. "It is not the case that all babies born at 23 weeks are routinely resuscitated. Each baby must be treated as an individual, assessed appropriately and their care agreed on a case by case basis. All patients need the best clinical care and in that sense these special babies are no different to anyone else."

Bliss operates a free helpline on 0500 618 140. For further details go to www.bliss.org.uk.