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Therapy gives Beatrice a much better life

Twenty-five weeks into a textbook pregnancy, Louise Murray was holidaying with her parents and toddler son on the Hebridean isle of North Uist when the unthinkable happened.

The expectant mum was dramatically airlifted to Glasgow's Queen Mother's Hospital, where she gave birth to identical twin baby girls.

"I went into labour at a time when I should have been choosing prams. Doctors prepared me to give birth to two dead babies. It was an enormous shock," recalls Louise.

Weighing 800g, Beatrice arrived first, followed by sister Flora at only 680g. While the girls defied doctors by surviving the birth, both experienced major brain haemorrhages.

In their first few days of life, Flora fared better than her sister, but quickly deteriorated. Tragically, she lost her fight for life in the intensive care unit on the eighth day.

When drugs failed, baby Beatrice was fitted with a shunt to prevent excessive fluid resulting from the clot in her brain building up and causing further brain damage. Parents Louise and Stephen were advised that her chances of survival were minimal.

"While they rightly gave us the worst case scenario, doctors did acknowledge that there was a slim chance she may have no resulting impairments," said Louise.

"But I always had a gut feeling, based on nothing, that Beatrice would be extremely physically and cognitively disabled."

During her five months in hospital, tiny Beatrice clung to life, and underwent eye surgery to afford her six per cent sight.

On her homecoming, Beatrice was on oxygen 24-hours a day, and remained so until she was two-and-a-half years old. Consultants at Yorkhill Hospital for Sick Children diagnosed cerebral palsy, and further surgery followed, this time on her hips.

Bobath Therapy

Only then did the Murray family learn about Bobath therapy through another parent and a health visitor, and Beatrice received her initial block of therapy at the age of three.

"Bobath Scotland pulls it all together," explained mum, Louise.

"While Beatrice's only means of communicating is smiling or crying, I know she thoroughly enjoys the therapy. At Bobath, we've been shown techniques that are good for postural development in ways that are fun for Beatrice.

"Every time we attend the Bobath Scotland Children's Cerebral Palsy Therapy Centre, we're asked which areas of her development we want to focus on. The staff are incredibly experienced and concentrate on the whole child."

Deaf and severely cognitively impaired, Beatrice is not able to manipulate toys with her hands, so a way that she can play semi-independently is to activate battery-operated toys or colourful computer graphics via a flat pressure switch.

When Beatrice is positioned optimally and given sufficient time to organise her own movement, she is able to press a switch without assistance. Beatrice particularly enjoys toys and computer programs that have movement, produce sound and have bright colours.

Bobath Scotland head of therapy, Rina Van Der Walt explained: "Some switches can be used on their own because they have built-in voice recorders. Songs, rhymes and short stories can be recorded onto the switch itself and can be played back when Beatrice presses the switch. This allows Beatrice to 'sing along' or 'say rhymes' with other children simply by pressing the switch."

Continued Louise: "Bobath therapists are unique in our lives in that all the time we have spent with them involves actual therapy; we come out of each block with a set of guidelines which is given to school staff and as far as I can see actually get followed.

"Bobath is plugging some pretty enormous gaps - as an example, there is no way Beatrice and I would even have heard about the Akka mobility platform and I am reasonably sure only Bobath therapists could have found the time to unearth her best position for using a switch, something that makes a huge difference to her life."

"The great thing about being involved with Bobath is that they are an authority in providing therapy to children with cerebral palsy, and command great respect among professionals in the education and medical worlds. What Bobath says goes."

"Very much loved"

Clearly devoted to her two children, Sam (10) and Beatrice (8), Louise admits her family life is incredibly hard work – particularly since husband Stephen works as a lecturer in Japan. They've had many hurdles to overcome.

Every mum takes pleasure in feeding her child and watching the enjoyment of food and new flavours, but Louise had to concede that Beatrice's compromised airway was ill equipped to cope with possible aspiration when eating or drinking. And while she's now fed via a stomach tube, Louise still takes pleasure in allowing Beatrice occasionally to enjoy her favourite tastes on her tongue from the tip of her mum's finger.

Two years ago, Beatrice's airway collapsed, leaving Louise to battle for a permanent tracheotomy for her daughter. Due to the high risk of choking, Beatrice cannot be left unattended and the family has nursing care at home seven days a week during night hours. And although Louise greatly appreciates the peace of mind that allows her to sleep, a stranger in one's home overnight is intrusive in anyone's book.

"The way I've always looked at it, it's such a miracle that Beatrice is alive," said Louise, of Gartmore, Stirlingshire.

"I'd been preparing for two lovely, beautiful healthy babies, but ended up in a different place and to the realisation that not everything in the garden is rosy. I do feel more fortunate than some other parents, though. She came into the world with a sister, after I'd been told they wouldn't survive the labour, never mind anything else. She's an extremely happy child and a contented soul, and she's very much loved."

Fundraising Standards Board

Bobath Scotland, Cerebral Palsy Therapy Centre, Bradbury House, 10 High Craighall Road, Craighall Business Park, Glasgow G4 9UD. Tel No 0141 352 5000 Email: info@bobathscotland.org.uk
Bobath Scotland is a Scottish Charity, Index no SC022695 and a company limited by guarantee, No. SC149287