The joy and the pain of having a premature baby

It’s every parent’s nightmare – being told your newborn baby might not survive. But that’s what happened to Helene Hansen and partner Mark Kelly.

It’s not unusual for babies to be born a little before or after their due date. But doctors feared little Jack would not make it when he was born 11 weeks premature, weighing just three and a half pounds.

Like many people, Helene and Mark had never considered the possibility of their baby being born early and all the challenges they might face.

There have been incredible advances in medicine, which means it’s now not uncommon for babies born even as early as 23 or 24 weeks to survive.

But, as Helene and Mark now know, the agonising process of watching a child fight for life hasn’t changed for the parents of premature babies. There is often an assumption made that should a premature baby survive the birth itself, they will be fine in the long-term.

In reality, some of these babies will eventually die as a result of the complications of their early arrival.

Some will continue to develop as they should and match their peers at every stage, while the majority will face major challenges in terms of health and future development.

Before Jack’s birth on October 11, 2009, Helene managed a supported accommodation house for adults with disabilities, as a senior support worker with the Mainstay Trust.

She said: “My pregnancy was really straightforward to begin with. But when I was 22 weeks pregnant, my waters started leaking.

“I didn’t realise this was happening and carried on working for a month. Once that was diagnosed, I did start to worry.”

Even at that point, she and Mark remained positive. Living in the east end of Glasgow meant Helene was being cared for at the Royal Maternity Hospital close to her home.

But when she did suddenly go into labour, it was to discover there were no intensive care incubators available, so they had to be transferred across the city to the Southern General Hospital Neonatal Unit.

She said: “We knew he would need a lot of help, but when he was first born we were both just so grateful he was alive.”

Mark added: “He was a couple of days old when we were told it was likely he wouldn’t survive and that just hits you like a brick wall.

“The hospital were giving him the highest level of support so if he started deteriorating there was nothing further they could do.

“It was a fortnight later before he was stable enough to be able to look at survival and that was a very tough two weeks.” Helene said: “All your focus is on your baby, but at the same time the mortgage has to be paid and you have to keep each other going.”

Jack spent nearly five weeks in intensive care, followed by a further six weeks in high dependency.

Helene recalled: “We could see him making real progress and then a scan revealed a brain bleed had left cysts.

“Jack may now have long-term issues with his motor function, but we won’t know if that will be a diagnosis of cerebral palsy until he’s a little bit older.”

Helene puts it into words perfectly when she describes Jack’s homecoming, just three days before Christmas.

She said: “He’s not a sick little baby any more, he’s just like any little baby coming home and giving us the chance to be parents.”

The little boy’s full name is Jack William Hero Kelly.

Helene said: “Look at him – have you ever seen a more perfect hero?”

Bliss, the baby care charity, provides vital support to premature and sick babies. Log on to http://www.bliss.org.uk

SAMUEL’S NOW LOOKING FORWARD TO SCHOOL

That anguish of waiting is something Camille Craig and her husband David have also experienced.

Their son Samuel was born 10 weeks premature nearly five years ago, and the couple worried about where their little one would be cared for.

Although they live in Livingston, West Lothian, Samuel was also born at the Southern General Hospital in Glasgow where he stayed for five days until an incubator became available at St John’s, in Livingston.

His progress was steady and his parents focused on various milestones and ensured they were completely involved in Samuel’s care from the start.

Camille said: “It wasn’t a distressing time but it was very stressful.

“I didn’t let myself think about what could have happened. The staff are fantastic. They are not just caring for and supporting babies – they look after the parents as well.

“Our biggest shock happened when Samuel got home.

“He was unable to regulate his temperature and had to be re-admitted. That was agony because he went back into an incubator.

“I’d had a baby in my home then he was gone. But ever since it’s been about watching Samuel grow up and mature and now he’s looking forward to starting school.”

TRAGIC ELISSA LOST HER COURAGEOUS BATTLE

Lynseyann Nicol’s experience of premature birth is in complete contrast to the Craig family.

Her daughter Elissa was born on July 4, 2005, 16 weeks early.

By the time she was 13 weeks old, her parents felt confident enough to look forward to taking her home.

But a week later, they were told she had cerebral palsy with a huge range of medical issues, many of which would require surgery.

Lynseyann essentially became Elissa’s carer and looking after her two-year-old son Jamie was taken over by her parents.

She said: “I was really only Elissa’s mum for the first couple of months but we weren’t a family unit any more.

“Jamie was with his dad or his grandparents and with me for just short periods of time.”

This continued for the next three years, with Lynseyann doing her best to balance all her family’s needs.

Sadly, Elissa died just before her third birthday and life has changed yet again for the family.

Lynseyann said: “It took a few months, but Jamie’s back to treating me like his mum again and I am enjoying that very much.”

But she clearly has very mixed feelings about Elissa’s short life.

She said: “The hardest thing is she never got a chance to be a child and to play with all her toys.

“Towards the end of her life she was in a lot of pain and if I’m totally honest I do wonder if we were right to want her to live when she was born.

“But that’s your instinct – you just want your baby to live.”

For all your premature baby needs please visit Prem2Pram the premature baby store

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