28 November 2005

For the love of Kevin

Belfast Telegraph

By supporting the Hospice Christmas lights appeal, you can help shine a light on the many families here who are living in the shadow of terminal illness. One mother, Hilary McKernan, tells Jane Bell why her family will never forget what the charity did for them

**Please see the Hospice website

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28 November 2005

Hilary McKernan stood at the entrance to the Children's Hospice, with her sick baby in her arms, and hesitated. Just at that moment she might have turned to husband, Tony, and asked him to drive the family the 85 miles back to their home near Omagh.

But the couple's three older children had other ideas. "Come on, Mum," said the eldest, Damien, then nine. "We didn't come all this way just to go home again." His younger sisters had already raced indoors and Hilary had little choice but to follow them: "They just sort of swept me inside."

Within minutes her unspoken fears had melted away. There she found warmth and welcome, skill and support.

Over the next few years Horizon House - as the purpose-built Children's Hospice at Glengormley is called - became a home from home for the McKernans. A place where little Kevin, with severe cerebral palsy, could be cared for in safety, where his parents could relax and catch up on some much-needed sleep and where his brother and sisters could have fun and make friends.

The Hospice is also where Kevin died, just over a year ago at the tender age of three years and seven months.

It is in his memory that the family made a return visit to place a stone - carved with the child's name and, significantly, the date of his birth, not death - in the pond in the Quiet Garden of remembrance in the Hospice grounds. Tony, a stonemason, engraved it.

It was a private moment. But the McKernans are willing to forego their privacy, to talk about their loss, for a simple reason. They want all of us, who trust that our children will never have need to be there, to value and support the work of the Children's Hospice too.

The family is also sponsoring a light on the Hospice Christmas tree in memory of Kevin this Christmas.

Kevin was born at Altnagelvin Hospital in Derry on March 18, 2001, eleven weeks premature. Hilary refused drugs in the labour until the very end to avoid analgesics entering the tiny baby's system. He was born healthy but, weighing in at just over 3lbs, he was vulnerable.

With three other children to care for - Damien is now 12, Ciara, nine, and Claire, seven - Hilary had eventually to go home. With family support she and Tony settled into a routine of constant hospital visits and long vigils beside the incubator.

But before long there were growing concerns over Kevin's health and the baby was transferred to the Royal Hospital for Sick Children in Belfast. An eventual diagnosis of meningitis septicaemia which had led to cerebral palsy left them devastated.

Back at Altnagelvin, and still a long way from home in the village of Seskinore near Omagh, Hilary could barely tear herself away from her baby's incubator: "I stayed by his side through thick and thin. Visitors came and went and I just stayed there." A special mother and baby room was a welcome facility.

"I remember one nurse always saying to me 'One day at a time'," says Hilary. "To be honest I sometimes found it irritating. But when I got him home it was then I realised what she meant. We didn't know whether that day or the next day was going to be his last. There was nothing else for it but to take one day at a time."

The McKernans took Kevin home on June 3 - what had been his due birth date. His older siblings all have birthdays within a week of one another around Christmas and Hilary had been looking forward to a summer birth. Instead her dreams were shattered.

The nurse had also frequently said 'Enjoy your baby'. And that was what she vowed to do. "It struck me that I was at home with a special care baby and who was going to help me?" she says. "But we knew that, whatever happened, we were going to do our very best for Kevin. We took him everywhere with us. We made sure people saw him. We made a conscious decision there was to be no hiding away. The children just accepted him the way he was and were very protective. To them he was special in more ways than one."

For the parents, it was exhausting. The routines of family life and the demands of Tony's business continued. Blind, with very little hearing and no speech, Kevin needed virtually round the clock care and they were getting very little uninterrupted sleep. Night after night Hilary dosed fitfully while Kevin, now growing into a toddler, slept across her chest:"It was the only way to settle him, he loved cuddles and touch and warmth."

Beyond family and friends there was little outside support. Tony recalls: "We'd asked 'what help's out there?' but it seemed there was nothing around our area. I believe the authorities do what they can with the funds available but often it's just not enough."

Hilary adds: "Help was so thin on the ground we felt like beggars, exploring different alleys to no avail."

It was local health visitor Bridget O'Neill who first brought the Children's Hospice to the family's notice. "She left some leaflets on the table so we could give it some thought and maybe come round to the idea," says Hilary.

"The very word 'hospice' bothered us. We didn't think of Kevin as life-limited. I suppose we knew in our hearts but we didn't want to admit it."

Once contact was made, Karen Bleakley, a children's palliative care nurse specialist attached to the Hospice, began visiting the family at their home.

"One of the first things she said was 'You need help'," says Hilary, her relief still tangible.

By the time Kevin was about nine months old, the McKernans made that first anxious visit to Horizon House.

Hilary says:"He was the youngest child there and everybody doted on him. The staff couldn't do enough for you. We felt understood and that we weren't just on our own with Kevin. It was like an extension of the family."

Every six to eight weeks they would receive a letter inviting them to spend a couple of days and nights at Horizon House. "It caused great excitement, the children looked forward to the letter coming through the door with our dates," recalls Hilary.

Facilities include an art room, a music room, a multi-sensory room and a pool and the family enjoyed them together, while Tony and Hilary appreciated the break from chores and a couple of good nights' rest in private quarters, safe in the knowledge Kevin was being well cared for. They enjoyed simple pleasures like shopping and taking the children to the zoo nearby.

"We had some great times. Driving home again we felt set up for the weeks ahead," says Tony. And his wife adds: "When we got home we knew Hospice Care at Home was coming in."

The couple believe their older children matured beyond their years through their closeness to Kevin and through encountering other life-limited children at the Hospice.

When Kevin died it was sudden and unexpected. Close to Halloween last year, the older children were staying at their aunt's home while Tony and Hilary took Kevin to Horizon House for a break.

The child had a chest infection beginning and had been started on antibiotics but later took a sudden turn for the worse. The doctor was called and the parents alerted. "We got a knock on the door and just flew down the stairs," recalls Hilary. "We looked down on Kevin in his wee buggy, where he had been placed so he could be close to the staff in the night. He was pale and unresponsive. The end came quickly. Kevin died at 10 to three in the morning, the same time he had been born." A priest was called and prayers were said as the parents cradled Kevin's body. "He died in the place he loved," says Tony.

They travelled home to break the sad news to his siblings face to face.

"We'd always kept the children involved from the very beginning," says Hilary, "There was nothing hidden from them.

"It helped, too, that the Hospice doesn't just leave you whenever it's over. We were offered bereavement counselling but felt we were progressing."

Instead, the family want to give something back. One of young Damien's first acts was to set off round the village on his bike selling a bundle of fundraising wrist bands. "There will be other children like Kevin and other families who will need the support we had," his mother says.

The carved stone in the remembrance pool and their light shining on the Christmas tree say it all. That Kevin was born, lived his short life, was loved and will be remembered.

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