Centre Proves Haven of Care and Support
By Joanna Vallely
THE noise of the wake-up call blared through the bedroom at the Sick Kids Hospital’s parents’ unit, rousing the sleeping women an hour earlier than expected. Fearing the worst, Channah Lynas, her mum Susan and aunt Florence all dressed hastily and ran across to the ward to see baby Harry.
The youngster, just four-months-old, had been rushed to hospital on February 28 after his mum had found him lying rigid and screaming in his cot.
A nurse told Channah that little Harry had been moved to intensive care during the night. The first-time mum was devastated to see the tiny infant lying in a coma, induced so doctors could carry out brain scans without upsetting him.
Channah, 20, says grimly: “I thought that’s it, we are going to lose him. Me, my mum and my auntie all looked at each other, and although we didn’t say anything then we were all mentally planning his funeral.”
Two days earlier Channah had found Harry screeching in his cot at their Livingston home, with his whole body as stiff as a board. “I thought he’d broken his arms and legs,” she recalls. “I ran into my mum’s room and he suddenly went floppy.
“We went to St John’s Hospital in the ambulance and they didn’t know what was wrong with him. As soon as we got there he started fitting – his legs, arms and head were jerking.”
The next day Harry was transferred to the neurology ward at the Sick Kids Hospital with suspected encephalitis, or swelling of the brain.
After the little boy’s overnight move to intensive care, doctors told Channah that he had only a 50/50 chance of survival – their estimations dropping to just one in ten as the week progressed.
Even though he was paralysed by drugs, his mum could still see, by the constant activity of the monitor to which he was hooked up, how his brain continued fitting. Yet every brain scan was coming back clear.
Looking back now, as she cuddles seven-month-old Harry on the sofa at home, Channah says she wouldn’t have got through that anxious period without the respite provided by the Sick Kids Friends Foundation Drop-In Centre. “If it hadn’t been there, I don’t know what I’d have done,” she says candidly.
As doctors fed Harry with antibiotics and monitored his gradually decreasing fits, Channah, her mum and aunt Flo went to the nearby Drop-In Centre to e-mail Channah’s sister Katie, who lives in Mexico, about Harry.
They were also able to get some time out, have a cup of tea and chat to the staff. The Millerfield Place centre opened its doors in May last year after Evening News readers helped the Sick Kids Friends Foundation raise GBP 100,000.
Manager Helen Taylor says they have been delighted with the response to the centre, which is run through a Big Lottery grant and donations.
This week they are holding anniversary taster sessions for hospital staff, as well as hosting an afternoon tea for the support services they work with.
Helen says: “It’s been phenomenal. We have had over 300 families using the centre since we opened.
“They come back regularly and will often connect a visit with a trip to out-patients.”
The centre is open Monday, Tuesday and Friday from 10am to 4pm, and on Wednesdays and Thursdays from 10am until 8.30pm. Helen reveals they also hope to open on Saturday afternoons from July and on Monday evenings from the end of this month.
Facilities for patients and families include counselling, complementary therapies such as aromatherapy and Indian head massage, arts and crafts, internet and e-mail access and Nintendo Wii.
“We don’t tell them what to do. They can just hang out and watch TV or read a book or join in group fun. It’s a place where you have to come through the doors to experience the homely atmosphere,” Helen says.
The centre is free to use and is currently staffed by 12 volunteers who work regular slots, as well as two part-time support workers, two complementary therapists, an assistant manager and manager.
Harry Lynas spent seven weeks in total in the Sick Kids Hospital, where he was diagnosed with epilepsy.
He eventually started getting brighter as his fits reduced in length and frequency, thanks to anti-seizure drugs, Diazepam and lots of love and attention. He still had fits after he was released but they only lasted a few minutes, instead of up to 40 minutes as they had when he was in hospital.
Now at home with his mum, he looks happy and alert, though Channah says he is still about six pounds underweight for his age and, as if on cue, his roomy trousers slip half-way down his legs to prove it.
At the peak of Harry’s illness, a constantly tearful Channah was living in hospital accommodation yet couldn’t always sit at her son’s bedside for long periods because of restrictions on intensive care visiting.
Luckily a few days after Harry was admitted, someone told Channah and her mum Susan Lynas, 61, and aunt Florence Oakes, 67, about the Drop-In Centre. Channah recalls: “The way it was painted cream was so tranquil and the volunteers greeted us at the door and offered us a cup of tea.
“Getting away from the hospital grounds and being able to talk to other people was good. The e-mail was great too, as it is so expensive to ring Mexico.”
When Channah’s little cousins came to visit Harry at the hospital, they were able to go to the Drop-In Centre to play.
The young mum even met another mother whose child had epilepsy, and she connected her with the epilepsy charity Enlighten to get information and support. Harry’s epilepsy is now under control with drugs, which he takes six times daily, and his seizures have eased to around five a day, each lasting less than a minute.
He sleeps more than he should because of his medication, his mum says, but the fits are now less frightening. Channah says: “They don’t seem to bother him. He’ll sit and laugh through them.”
The full-time mum still calls into the drop-in centre and will book herself in for a massage if Harry has an out-patients’ appointment at the hospital. But she says she will never forget the relief of being able to pop in there while Harry was battling in intensive care. “It was time out for me and the staff were so nice. Sometimes I’d go and have a good cry and they’d give me a cup of tea.”
To donate to the Sick Kids Friends Foundation call 0131-668 4949 or go to www.edinburgh sickkids.org. For more information on epilepsy, visit Edinburgh-based charity Enlighten’s website at www.enlighten.org.uk or call 0131-226 5458.
BEFORE THE CENTRE WAS HERE I’D BE STUCK IN THE WARD – IT’S REALLY GOOD
TEENAGER Hannah Gray and her family from East Linton were among the first users when the Sick Kids Drop-In Centre opened last year. The 15-year-old, who has Systemic Sclerosis Scleroderma, as well as secondary Reynaud’s Syndrome, was involved in fundraising for the centre and cut the ribbon at the official opening on May 20, 2006.
Hannah’s mum Anita Pate, a glass artist, says the centre has been a great help to the whole family. “I often bring Hannah in because she’s on the ward a lot and it’s very noisy. She likes it because it’s quiet and she can study for her exams. She can also make friends and use the internet.
“I’ve tried the massage, which is very nice, and when Hannah was having a small operation I came in and had a cup of tea. It’s nice to have a chat with other parents and swap stories. We would be struggling to keep Hannah happy at her age without it.”
Hannah has been going to the Sick Kids Hospital for the past seven years, to receive treatment for her condition, which leaves her shivering even during the warmer months. Every month she spends three nights at the hospital where she is put on a drip to improve her circulation.
The fourth-year pupil at Knox Academy in Haddington, who is studying for her standard grade exams, says she uses the Drop-In Centre frequently.
She says: “I go over in the afternoons or evenings and have a cup of tea and watch TV or check my e-mails. I like to come and talk to people.
“Before the centre was here, I’d be stuck in the ward. It has been really good and is also really good support for parents.”
(c) 2007 Evening News; Edinburgh (UK). Provided by ProQuest Information and Learning. All rights Reserved.