Parents explain the legacy their son has left behind

Published on Friday 29 May 2009 09:57

BABY Keira Helen Mallon is perched on her mum's knee, playing with the hem of her pretty new purple dress, giggling while dad Phil blows raspberries and pulls a funny face.

Next month she'll celebrate her first birthday, and of course there'll be lots of presents, a lovely cake with pink icing and a single candle and dozens of birthday kisses.

Mum Pamela Kerkhoff smoothes down a wisp of her daughter's blonde hair and the charming family scene is complete, but behind those giggles and cuddles, dad's funny faces and mum Pamela's dazzling smile lies a deep emotional wound that even Keira can barely begin to heal.

"Some people might think because we have her, that the hurt stops," says Pamela, the smile fading for a moment as she remembers the dreadful day almost exactly two years ago this week when her first-born, the "miracle" baby she'd been told she'd probably never have, slowly died in her arms.

"This second anniversary has been harder than the first," she adds. "So many people forget because now we have Keira.

"It's as if she's supposed to be some kind of Elastoplast – everything is supposed to be better because we have another baby.

"But what happened to Luke doesn't go away – I don't think it ever will."

Which is why two years on from baby Luke's heartbreaking loss, Pamela made the painful journey back to the hospital where he died, to complete the delivery of two vital pieces of equipment – machines that are already helping premature babies like him win their own fight for life.

Two 8,000 SiPap machines – specialist equipment that helps premature babies to breathe without a ventilator – are now in place at the Simpson's neonatal unit, paid for after a mammoth and emotionally turbulent fundraising drive to make sure Luke's death was not in vain.

Meanwhile, over at St John's Hospital in Livingston – the town where the family live – are three "Luke4Life" apnoea monitors, which sound an alarm should a baby suddenly stop breathing.

"There's no way of knowing if anything could have been done differently to save Luke," explains Pamela. "But we want to do whatever we can to give other babies a chance."

She was still battling to come to terms with her grief when she launched the Luke4Life charity just a few weeks after her son's death. A glittering fundraising ball raised thousands of pounds – since then dozens of supporters have added to the charity's funds, running marathons and raising cash in Luke's name.

Their support brought enormous comfort at a time when Pamela and Phil were still reeling from their son's tragic loss – after all, he was the baby that Pamela had been told she would probably never be able to have . . .

She had already gone through six years of fertility treatment with her husband at the time, when medics told her she had Empty Follicle Syndrome – a condition in which no eggs are retrieved during IVF treatment, rendering the process useless.

A further blow was news that she has polycystic ovarian syndrome – linked with multiple ovarian cysts and infertility.

The stress contributed to the breakdown of her marriage, and Pamela tried to come to terms with the likelihood she would never become a mum.

Certainly the last thing she expected was to fall pregnant with her new partner, Phil Mallon.

The couple were overjoyed until 30 weeks into the pregnancy Pamela developed the potentially fatal pregnancy condition pre-eclampsia. Luke had to be delivered by emergency Caesarian section, weighing just 2lb 12oz.

He appeared to be coping well until, at just five days old, he suffered a massive brain bleed so dramatic that it left him brain damaged and unable to breathe unaided. His ventilator was switched off and a grief-stricken Pamela was handed Luke to cuddle for his final hours of life.

She sat for 13 hours, pressing him close to her chest so he could sense her presence, before he finally took his last tiny breath.

Little wonder then that when she fell pregnant with Keira just six months later, Pamela and Phil's delight was diluted by enormous anxiety.

"We were really still grieving for Luke," remembers Pamela, 35, who works for financial firm BlackRock. "So while we were delighted, we were also both incredibly worried."

There was a 60 per cent chance of developing pre-eclampsia a second time – so when Pamela's blood pressure soared at 34 weeks, she was admitted to hospital. When it plunged a week later, the couple feared the worst.

"I collapsed and there were nurses everywhere," remembers Pamela. "I heard them panicking, saying they couldn't find a heartbeat – I couldn't believe it was happening again."

Doctors decided to carry out another emergency Caesarian section, and Keira was delivered, weighing a healthy 6lb 4oz on 20 July last year – a month before her due date.

But the drama was far from over. Pamela recalls: "Everything was going well, we thought it was the perfect ending, but a few hours later one of the nurses said she wasn't responding very well.

"We were waiting for her to go to the Special Baby Care unit, when I realised her arms had gone blue and she didn't seem to be breathing."

"I was in tears," remembers Phil, 32. "I'd never seen a room fill so quickly with nurses and doctors, it was terrifying. One was shouting something about her heartbeat, they were all rushing around. I thought that was it, that we had another dead baby."

Keira was rushed to the very same room where her brother had fought for his life.

"We couldn't believe it was the same intensive care ward – we simply weren't prepared for that," recalls Pamela. "To see her in an incubator with tubes, receiving oxygen . . . it brought everything Luke went through right back."

Keira pulled through after eight days in intensive care, and today she is a lively 11-month-old bundle of giggles, oblivious to the trauma and the heartache suffered by her devoted mum and dad.

But while the drama of her arrival has settled down, the work to help improve the prospects of the next generation of special care babies continues.

Luke4Life has been adopted by financial firm Ageon's Edinburgh base as one of the charities it has pledged to support this year, and come autumn Pamela and Phil will steel themselves for an emotional night of fundraising at a charity ceilidh to be held at Edinburgh Academy.

"Luke4Life is a way to give something back," says Pamela, "and we are determined to continue what we started."

For more information about Luke4Life, see www.indigops.com

SPOTTING THE SIGNS

PRE-ECLAMPSIA affects some women after 20 weeks of pregnancy.

Signs include high blood pressure usually combined with the presence of protein in the urine.

Women may also experience other symptoms such as headaches, blurred vision, upper abdominal pain, oedema – swelling of the face, wrists or ankles – or abnormal blood results.

Untreated, it can develop into the potentially fatal condition, eclampsia.

Around ten to 15 per cent of first-time pregnancies can result in pre-eclampsia – many then require an emergency Caesarian section.

Premature babies are at a high risk of brain bleeds and tiny changes in blood pressure can be enough to trigger a bleed.