OVER tea and biscuits in a Glasgow living room 50 years ago, a small group of parents talked about what it meant to them to bring up a child with spina bifida. They laughed and cried and shared their fears, and the seeds were sown of a charity which is celebrating five decades of providing support and advocacy for people across the country affected by these complex, lifelong conditions.

Amongst them were Mae Whiteford, a housewife from Milngavie, and her six-year-old daughter Margo.

Moments after the doctor told Mae that her little girl, born a few hours earlier, had spina bifida, he asked her to go home, let nature take its course and “try for a normal baby”.

“I can still hear him saying it, even now,” says Mae, with a shake of her head. “It seems incredible, doesn’t it? That a doctor would say something like that. But he did – and back then, you were in awe of doctors. I didn’t know what to think or feel so I accepted it.”

She adds, with a grim smile: “The feistiness kicked in later on…..”

Five decades on, over tea and biscuits in a different living room, Mae – now in her 80s - and Margo, 56, a clinical geneticist, are looking back with pride at how the association has helped to change things.

“Doctors’ communication skills have improved, for one thing,” says Mae, wryly. “You would never imagine a health professional coming out with something like that now, would you?”

Margo also believes things have changed in the last 50 years, but adds, carefully: “I still hear about mums who are given stories of no hope but there has been a lot of training since then and you would sincerely hope that any message would not be delivered in the fashion it was delivered to my parents.”

Spina bifida is a fault in the spinal column where vertebrae do not form completely, leaving a gap causing problems with the nervous system. Hydrocephalus, which often accompanies spina bifida but can exist on its own, is a condition where increased pressure from fluid on the brain can cause social, emotional, cognitive and behavioural difficulties.

Based at the Dan Young Support Centre in Cumbernauld, the charity – now known as Spina Bifida and Hydrocephalus Scotland (SBH Scotland) after a name change from the Scottish Spina Bifida Association to better reflect the families it represents – works from Shetland to the Borders, and is the only dedicated charity of its kind. It provides critical services such as a helpline, health check clinics, one-to-one support, social groups, advice and training, all supported by donations.

It’s a long way from its humble beginnings in a living room in Milngavie.

“There were five or six families at the start – we’d got to know each other while we waited around for hospital appointments,” says Mae. She and her husband Ron, who was a transport manager for newspaper publishers DC Thomson, now live in Monifeith near Dundee.

“We didn’t do all that much back then, we just met up with our children, had a cup of tea, and supported each other. Elsie Wilson was the main organiser, and she would sometimes arrange for someone to come and speak to us at the village hall, and it really evolved from that.”

After the initial shock, the couple tried to discover more about spina bifida and what it might mean for their daughter. Mae was terrified her baby might die.

“I worried a lot,” she says. “I measured her head all the time, because I found out swelling could be a sign of developing hydrocephalus. I was frightened. And of course I was upset – I didn’t know what was going to happen to our baby.”

Mae and Ron, who also had a 20-month-old son Leslie, were eventually given some hope by their GP, who referred them to a plastic surgeon at Yorkhill.

“He said he would operate, which was wonderful news,” says Mae. “We asked him if it would have made a difference had we been referred earlier, but he couldn’t say.

“The surgeon’s actual words were that what Margo had gained on the swings, she had lost on the roundabouts – in other words, had she been referred earlier, she might have had more power in her legs but equally, she may have developed hydrocephalus….”

The next few years were a whirlwind of hospital appointments, surgery (by the time she was three, Margo had endured four major operations on her back and legs) and challenges such as starting school.

“She was always going to a mainstream school,” says Mae, firmly, adding with a laugh: “See? I was getting more feisty by then. But I wanted her at the local primary in Milngavie, and they were happy to take her as long as I went up to help her. I think they were worried about her falling, and they didn’t want to be responsible.”

So, every day, at both playtimes and lunchtimes, Mae would walk to the school to help lift Margo up and down the steps into the playground so she could be with her friends.

“It must have been hard on my parents,” says Margo. “They both did so much for me and I’m grateful to them. I didn’t recognise I was different at that age. I just wanted to do what all my friends were doing. And I was pretty fearless.”

Her mum rolls her eyes, adding with a laugh: “When she was about two years old, her dad got her a walking frame and she ran wild up the cul de sac.

“Before that, she wore out the knees in her clothing, trying to get around quickly.”

Margo chips in: “I remember sliding everywhere – and because I had no sensation in my legs, I would have no idea if I hurt myself. Grass was the worst – the spiky blades would rip my skin and I wouldn’t feel it, so the blood would be dripping down my legs. Even when I was older, I used to swing around really quickly on my crutches because I could get places faster.”

She grins and adds: “I’d only do it properly when I was walking into my appointments and they weren’t daft, they knew what I was up to.”

Mae adds: “She never wanted to be mollycoddled, but I wanted to mollycoddle her.”

“You still do,” says Margo, instantly, adding in mock indignation: “When we cross the road, she STILL tells me to be careful. I’m 56! It’s ridiculous.”

“But that’s what mothers do,” replies Mae, unapologetically. “What mother wouldn’t? I know you need your space but sometimes I can’t help it.”

Margo adds, seriously: “My mum has done so much for me – she always wanted to protect me, even when I probably wasn’t aware I needed protected. For example, if all the kids in the street were out riding their bikes, she would distract me so I didn’t feel left out – maybe take me shopping. We always went shopping.”

She jokes: “I blame her for turning me into a shopaholic, actually.”

There were distressing times too, as both women recall. “I learned to tell the time very early on,” Margo says. “I could see the big clock in the ward and I worked out fairly quickly when my mum had to leave after visiting times – it wasn’t like now, when parents can stay with their children - and I’d start to cry. It was awful.”

Mae adds: “It was very hard to leave her – although the nurses always said she was fine once I’d gone. And poor Leslie spent a lot of time in hospital corridors, waiting to see his sister. Every time we went, I had to buy him another toy car, to keep him entertained.”

The young Margo always wanted to be a doctor. On one of her many visits to the neurosurgeon, he asked Margo what she wanted to be when she grew up.

“I told him I wanted his job,” smiles Margo. “He said there was nothing to stop me becoming a doctor and to be honest, I never doubted that I would.”

Mae breaks in with a laugh: “She was so shy and lacking in confidence, see?”

Margo says: “But it was true – I didn’t think about what I couldn’t do, often it is the perception of others about what you can and can’t do that holds you back.”

After completing a pharmacology degree at university, Margo trained as a paediatrician at the Royal Sick Children’s Hospital in Glasgow. “Back to my roots, back at Yorkhill,” she says.

She went on to specialise in genetics, and is now a respected consultant clinical geneticist working in Glasgow. “I can offer a bit of hope to families – show them that spina bifida need not hold their child back but at the same time, I have to be very careful,” she says. “There are varying degrees of spina bifida, and not every child will achieve what I have achieved.”

Digging into her family history revealed a link to spina bifida. "I discovered my mum had a brother who died when he was a baby,” says Margo. “The medical records revealed he had something wrong with his back and we think it was spina bifida.

“Nowadays, we know that taking folic acid in pregnancy can help prevent spina bifida, and we understand there are methods for draining fluid from the brain but back then, we didn’t have a clue.”

Margo’s life is hectic – on top of her day job, she is the chairperson of SBH Scotland and vice president of the International Federation for Spina Bifida and Hydrocephalus. “I got involved because I thought I could help give young people with spina bifida a voice,” she says. “I have friends with spina bifida who don’t want to speak out, or get involved, they just want to get on with their lives and I understand that. But I think I can play a role in raising awareness.”

For the coming year, Margo’s focus is on helping SBH Scotland mark its 50th anniversary. High profile events include a Burns Supper, featuring DJ Des McLean, comedian Karen Dunbar, former rugby player and radio presenter John Beattie and classical singer Nicola Cassells, plus a gala charity boxing event in Aberdeen in May and the Ladies Who Give an F lunch in Glasgow in June.

Margo will also attend the Evening Times Scotswoman of the Year dinner, organised by The Herald’s sister newspaper, in February. In 2009, Margo won the title and in her moving acceptance speech, she celebrated mothers, particularly those with disabled children.

“One of the hardest things I have had to do as a doctor is approach parents and say, 'I'm very sorry but there is something wrong with your baby',” she said at the time.

"You know that with that one sentence the world stops for them and their life is never the same again.”

Mae and Ron, and the other parents whose support of each other formed the beginnings of SBH Scotland all those years ago, would agree.

Mae says: “There is still a lot of work to do – the big challenge is to get the name out there, to let families know this charity does exist for them.” She pauses. “But I’m proud of what’s been done so far. I’m proud to have been part of it, all those years ago.”

FACTBOX

SBH Scotland’s With A Little Help From Our Friends campaign, is a year-long anniversary appeal which aims to raise £1 million. To support it, call 03455 211 600, email fundraising@sbhscotland.org.uk or visit www.sbhscotland.org.uk/fifty.