THE excited new parents sat patiently in the council office.
It was a special day for Louise and Mike Tait as they took newborn Jamie along to be registered at the John Muir House, in Haddington, wrapped up in his cosy snow suit.
Suddenly the silence was broken by a squeal. Except this time it was not a normal baby cry.
“I remember looking at Jamie and thinking his little face was quite red, but I thought he was fine,” Louise, 38, says.
“He made the same noise when the midwife was holding him a few days after we registered his birth and she said something was wrong. She phoned an ambulance and he was taken to the Sick Kids.”
Jamie had suffered one of his first epileptic seizures – the result of a rare brain disorder he had been born with. He was diagnosed at two weeks old.
Following an MRI scan at the hospital, Louise a part-time biomedical scientist at the Edinburgh Royal Infirmary, and Mike, 38, a systems and control officer for East Lothian Council, were given the devastating news that Jamie – who is now seven years old – was suffering from lissencephaly, which affects fewer than one in every 100,000 people. Louise says: “It was just heartbreaking. It was our first child and you’re just expecting everything to be normal and everybody to be healthy, and when you get news like that it’s a big shock.
“It does take a while to get your head round it and what it means for the rest of our lives and the rest of Jamie’s life.
“Once you come to terms with all these things, you can move on a little bit.”
Almost eight years on, the “squeal cry” that Jamie made while in the registration office is now a common noise heard by his parents at their Haddington home and a clear sign that he is suffering from a seizure.
His condition doesn’t stop at epileptic seizures. Jamie also suffers from global developmental delay and is unable to walk, talk or eat on his own, and is completely dependant on the care provided by his parents.
In his short life, he has stayed at the Royal Hospital for Sick Children on more than 20 occasions, including several weeks in intensive care.
That’s why Louise is so supportive of the Christmas appeal run by the Evening News and Lothian Buses, which this year aims to spread a little festive cheer to children across the Capital – especially those who find themselves in hospital over the festive period – and in the process raise some funds for the Sick Kids Friends Foundation.
Jamie, who will mark his eighth birthday at the end of the month, is one of several children across the Lothians to have found himself in Sick Kids over Christmas after being admitted with pneumonia in December last year.
“It was December 10 and Jamie had been a bit lethargic and could hardly keep his eyes open,” Louise says.
“We phoned NHS 24 and a doctor came out and said she wasn’t happy with his breathing, and called an ambulance.
“Christmas is never a good time to be in hospital but I think with the staff being there and us knowing them so well, it kind of makes a difficult situation quite easy.
“I slept beside Jamie in a little bed and Santa came round on Christmas Eve and left presents at the end of the bed. It was just really magical because you know what it’s like when you’re a kid and you’re excited about Santa coming – it felt like that.”
Jamie, who is in a wheelchair, spent three weeks in hospital over the festive period last year, a week of which was in intensive care where he underwent an operation to drain fluid from his chest and two blood transfusions, as well as receiving intravenous antibiotics. After spending Christmas and his seventh birthday in the hospital, he was discharged on Hogmanay.
Janice MacKenzie, 51, chief nurse at the Sick Kids, estimates there will be around 60 children spending this Christmas in the hospital.
Miss MacKenzie, who lives in Joppa, will be on call on Christmas Day and will pop into the hospital to see all the children for a couple of hours.
She says: “In the past, some children were worried that Santa wouldn’t know they were in the hospital, so staff spend some time reassuring them that he does. Some of the younger children do worry about it and ask where the chimney is in the hospital.”
Meanwhile, Ishbel Proctor, 55, play service co-ordinator at the Sick Kids, has been helping to get the children into the spirit in the run-up to Christmas by overseeing the various festive play activities, such as making cards and advent calendars.
Mrs Proctor, who lives in Penicuik, says: “There’s a lovely atmosphere on Christmas Day and we do try very hard to make it a nice Christmas for the children.
“I think their favourite part of the day is knowing that Santa’s been and brought them gifts – he’s found them.”
Since his stay in hospital last Christmas, Jamie has attended Sick Kids for regular clinics and check-ups but hasn’t had another lengthy stay.
His longest period was five weeks – three of which were in intensive care – after his left lung collapsed at just 18 months old.
“We had taken him to Ocean Terminal for the day in January 2005 and when I was getting him dressed for bed at night, I noticed one side of his chest looked like it had caved in,” Louise says tearfully.
“His breathing was so erratic. I just panicked and phoned 999 and he was taken to hospital. He was put on a ventilator and had all these tubes coming out of him. He nearly died. It was horrible. When I think back to the staff in intensive care at the Sick Kids, I can’t thank them enough. They were just absolutely fantastic.”
Louise says it was difficult to put into words what the Sick Kids and its staff have done for the family.
“They have saved Jamie’s life so many times and that’s what it comes down to,” she says.
“If we didn’t have that facility 25 minutes up the road from us, we wouldn’t have Jamie and that’s the bottom line.
“Because the staff have known Jamie right from the start, right from being two weeks old, it means everything. They’re just like a big family because we are in so often.
“They are so supportive of everything and are on the end of the phone any time you need them. They’re just brilliant.”
Jamie, a primary three pupil at The Hub in Sanderson’s Wynd Primary School in Tranent, is registered partially-sighted. He will require spinal surgery to correct a curve in his spine over the next few years.
Louise adds: “Our wee man is so resilient. He’s just a wee fighter. He is a fab wee boy and we love him to bits. He brings so much joy.”
As part of our Christmas appeal, we have teamed up with Lothian Buses to create a Santa’s grotto which is touring the Capital, stopping to welcome visitors at various locations. The campaign is supported by Jenners, Dobbies garden centres, sports store Decathalon and Tesco.
Youngsters visiting the grotto receive a small, free gift and their parents are invited to make a donation to our appeal. All money raised will go towards new equipment for Sick Kids and Princess Alexandra Eye Pavilion.
You can also donate presents for children who will be in hospital over Christmas, with unwrapped gifts for babies and teenagers needed the most. Financial donations can be made at the travelling grotto.
Do not miss your chance to meet Santa in his grotto. His next stop will be Princes Street – between Frederick Street and The Mound – on Saturday, from 12pm to 4pm
WHERE TO HAND IN YOUR GIFTS
Waverley Bridge Travelshop
Hanover Street Travelshop
Jarnac Court, Dalkeith
Monday-Friday 09.30am-4.45pm (closed 11.30am-noon)
7 Shandwick Place