Sunday 26 February 2017

Mum Helena Roche: 'Every time he kicked I thought that might be the last time I would ever feel him'

Jamie Murray is profoundly disabled. His mother, Helena, tells Joy Orpen about the wonderful care he gets when he goes to LauraLynn, which is a hospice for children with life-limiting conditions

Helena Murray with her family, Jack, Lucas and Jamie, who is cared for at Laura Lynn. Photo: Michael Mac Sweeney
Helena Murray with her family, Jack, Lucas and Jamie, who is cared for at Laura Lynn. Photo: Michael Mac Sweeney

When Mark Murray met Helena Roche in a pub in Cork, he couldn't have known that that encounter would change his life in the most profound way possible.

But it did, and they soon fell in love. Their son, Jack, is now 10 years old, Lucas is six and Jamie is four. The family is happily ensconced in Fermoy, Co Cork.

Sadly, however, Jamie is profoundly disabled and he requires specialised care 24 hours a day.

Helena says she and Mark were thrilled when they discovered she was expecting for the third time. However, in the 14th week of that pregnancy, she started bleeding, so she went to Cork University Hospital (CUH), where a scan was done. Suddenly, her life turned upside down. "The nurse got a very worried look on her face," Helena says. "Then she called for the doctor. I became hysterical and phoned Mark."

Later, a second scan confirmed that the baby's brain was severely compromised. The Murrays were told that he probably wouldn't survive until the next check-up. But the baby valiantly clung to life.

At 22 weeks, it was established that the baby was suffering from holoprosencephaly, a condition in which the forebrain fails to develop normally. "They said 80pc of the brain wasn't developed and never would be, and the brain stem, which is essential for the workings of the rest of the body, was badly damaged," Helena recalls..

The Murrays were told that even if the baby did survive the birth, his lifespan would be severely limited. "We were grieving before he was even born," says Helena tearfully. "Every time he kicked was a precious moment for me. I thought that might be the last time I would ever feel him."

When Jamie was finally delivered by C-section, he was immediately rushed to the high dependency unit with breathing problems. As the days passed, fluid began to build up in the brain, causing the fontanelle, the soft spot at the centre of his skull, to be unusually wide. A decision was then made to send him to Temple Street Children's University Hospital, in Dublin, for treatment. The prognosis for the infant was still very poor. "Before going to Dublin, we brought the boys into the hospital in Cork to say goodbye," says Helena. "That was so hard."

At Temple Street, a shunt was inserted in Jamie's head to relieve the pressure. "Before that, he couldn't do anything at all," says Helena. "He couldn't suck, he couldn't move, and he couldn't breathe. After the operation, he was able to cry, put his finger in his mouth and drink his bottle."

Helena's 30th birthday dawned while they were still in Dublin. But there was no celebration. "It was torture," she recalls. "We didn't know what was happening with Jamie, and we were worried sick about the boys back home."

When Christmas came, the Murrays were back in Fermoy and celebrated it like it was the only one Jamie would ever experience. Helena was on high alert at all times. "I found it very hard to sleep at night, as I was scared Jamie would die," she says. "I was told that if he made it past the birth, he'd only live for about six months. The six months came and went, and Jamie was still here."

Then there were further emergencies, when Jamie's shunt got blocked. Each time he'd have to be rushed to hospital and have an anaesthetic while the shunt was replaced. When he was a year old, Jamie lost the ability to suck; by now they knew he was almost totally blind and deaf. He also began having bad chest infections and consequent seizures. Last year, Jamie was admitted to hospital on 17 occasions. Since birth, he has had pneumonia five times, and eight shunt replacements (revisions). The family continually faced the prospect of losing this frail little fellow, but miraculously he has battled through each daunting episode, with the help of staff at CUH and Temple Street.

Visiting the family's compact but cheerful home in Fermoy, it is immediately apparent that everything revolves around Jamie. The kitchen leads into a big room full of equipment, everything from an electric hospital bed, to special chairs and prams. Jamie is contentedly watching television, even though his sight and hearing are very limited. Helena says his chest is good right now, but any sort of infection triggers severe seizures. On one occasion she had to perform CPR while waiting for an ambulance. So it's a relentless job, caring for this little guy, but it's one Helena does with grace and total commitment.

Jamie has a HSE nurse two nights a week; otherwise he sleeps with his mum in his room. And even though her boy is hooked up to a monitor, Helena sleeps with "one eye open". Jamie's care is so complex that only highly experienced people (which now includes his parents) can look after him adequately. He's tube fed, needs oxygen, has to be suctioned constantly and requires regular physiotherapy.

While carpenter Mark works all the hours he can get to help pay the endless costs of Jamie's care, he and Helena are deeply touched by the support they get from family, friends and their wonderful neighbours, who have all helped raise thousands of euro to fund Jamie's purpose-built room and to provide a range of special equipment.

Last year, the Murrays also linked up with the LauraLynn Children's Hospice in Dublin, as they offer respite for children with chronic, life-threatening illnesses. Once his case was clearly understood, the Murrays were able to bring Jamie to the hospice for short stays.

"When he's there, a room is set up specifically for him," explains Helena. "We can bring the other two boys and once Jamie is settled, we can go off and do our own thing, knowing that his every need will be taken care of. It's so great to be able to take a breather and to be able to be a proper mother to the older boys for once. It's fantastic not having to worry about the medical side of things, while knowing that the team loves Jamie so much. They involve him in everything.

"He adores being in the sensory room; they even have a sensory bathroom with a jacuzzi, soft lights and music. The staff members love every single child at LauraLynn as if they were their own. If Jamie died in their care, I would not feel guilty, because I would know it had happened in a totally loving environment."

Some 3,840 children in Ireland have life-limiting conditions. LauraLynn relies on donations for services to help these families, tel: (01) 289-3151, or see lauralynn.ie

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