Marion Whiting and Ben Ipswich Miracle Baby

MARION Whiting celebrated her 65th birthday with the publication of a children’s book she penned with her son. Ben.

Marion Whiting and her son Ben Whiting have written a childrens book aimed at youngsters who have respiratory conditions. They write under the names of Marion Maz Mason and Steve B. Mason.

“Not bad for someone who wasn’t expected to see their fifth birthday,” she says.

Marion has always been a fighter, someone who has defied the medical odds throughout her life and someone, above all else, who has remained positive whatever life has thrown at her.

She was born in 1946 with congenital scoliosis, or curvature of the spine. Her rib cage and pelvis are also affected and her condition is so pronounced that she would be a foot taller if her spine were straight.

But she has never let her disability hold her back or used it as an excuse for anything.

Marion Whiting and her son Ben Whiting have written a childrens book aimed at youngsters who have respiratory conditions. They write under the names of Marion Maz Mason and Steve B. Mason.

Over the years she has worked in accountancy, been a church organist, a magistrate, a charity treasurer and local representative for the Scoliosis Association.

Back when she was born, there was no treatment for her condition – her bones had not formed correctly when she was in the womb – but she remembers a fairly normal childhood, apart from the fact that she couldn’t play sport or run around like other children.

When she became an adult, however, doctors were keen that she should understand one thing: she should never get pregnant or have children. It would just not be possible.

But Marion married and although she and her husband fostered children they still yearned for one of their own. In 1977 Marion defied medical opinion to give birth to Ben, who was born weighing almost 6lb just two weeks short of full term – and his mother had a normal delivery.

Marion delves into the piles of paperwork stacked around her sitting room at Highfield Road, Ipswich, and pulls out some scan pictures that show her unique skeleton in graphic detail.

“The first thing I said when I saw them was, ‘how did I manage to carry a child?’” she says. “He really was a miracle baby.”

Now mother and son have collaborated on two books that aim to demystify CPAP (continuous positive airway pressure) machines and ventilators. One, aimed at children with a family member who uses such a machine to help them breathe while they sleep, has just been published and the other, aimed at answering non-medical questions for adult users of the machines, will be published on December 5.

Marion herself has used a machine to help her breathe at night for the past 20 years but people also use CPAP and ventilators for other conditions: commonly sleep apnoea, where someone’s airway narrows so much during sleep they actually stop breathing momentarily.

People often dread having to use a machine to aid breathing at night and Marion was no different when one was suggested to her as her health deteriorated when she was in her mid 40s.

But using the machine probably saved her life.

“I thought I’d never cope with a mask over my face and it was goodbye to leading a normal life ever again,” she says. “I was wrong on both counts.”

Marion was fortunate the technology was available at the time when she needed it. People with her condition in previous years would not have survived beyond a certain age.

“People were not expected to live in the years I was born,” she says. “If you made it to 40 it was probable you wouldn’t be able to breathe as you aged and your body changed, so people like me used to die.

“I was lucky because when I reached that stage the medical profession were able to do more about it rather than just letting you go.”

As well as the scoliosis Marion also has several missing ribs, which further affected her chances of survival when she was a child, leading to fears her vital organs were not as protected as they should be.

“I used to wear a strange corset, I remember,” she says. “It was a rudimentary kind of brace.”

Marion’s scoliosis is congenital, meaning it is caused by a defect in the formation of the spinal column before birth, but that is comparitively rare.

Most cases of scoliosis occur in childhood or adolescence and are worsened during periods of growth, sometimes coming on very rapidly, often when a child is about 10 or 11 years old.

Princess Eugenie, left, had an operation to correct the condition when she was 12 years old and Madonna’s daughter Lourdes, below, reportedly had to wear a body brace to correct adolescent, or idiopathic, scoliosis, which is six times more common in girls than boys.

In addition, some people can develop what is called degenerative scoliosis as they age, either because of an earlier undetected condition or because of injury.

As a child Marion knew she wasn’t “the same” as other children and she didn’t have as much energy as they did.

“But that was normal for me so I accepted it,” she says.

“I used to go to hospital for a yearly check up because I had a brace and it had to grow with me and I carried on having an annual check up until I was about 18 or 20.

“When I got to adolescence and others started dating and having relationships I was told there was no way I would ever have a child. They said that if I got pregnant it would kill me. My body is only actually 13 inches long – all my organs are squished up.

“After I got married my husband and I fostered for a while but then we decided that if we did not try to have a child of our own we would never know if we could. Once I was pregnant the hospital took great care of me. They said I would not be able to carry a child beyond five months but I did and went on to be induced at 38 weeks. I was healthier than I have ever been when I was pregnant.

“They said there was no way I could have a normal delivery but I did. Ben was 20 inches long when he was born and weighed 5lb 12oz. As my condition is not genetic we did not have to worry Ben was going to have it.”

But the joy of Ben’s birth was marred by the death of Marion’s father a few days later and a serious road accident involving her husband a few days before.

But Marion just got on with things and adapted well to motherhood.

It wasn’t until she was about 45 that she started having breathing difficulties related to her scoliosis and had to start using a machine to help her breathe while she slept.

“Before I got my machine I was close to death,” she says. “I couldn’t breathe properly when I slept and would wake up every few seconds because of this. Having the machine saved my life.

“These days it is very unlikely anyone would get as poorly as I was because they are so much more aware of it now. People should get help before their daytime function is impaired and they get really ill.

“People with sleep apnoea who get a machine are so well afterwards and the condition can be so dangerous if it’s left untreated. People can even end up falling asleep when they are driving and cause accidents.”

Over the years Marion has also been involved in charity work and often found herself being approached to offer advice to people about CPAP machines.

“I started to look for a book that I could recommend to people,” she says. “There was nothing so I started writing what I thought would end up as a leaflet or two and enlisted my son’s help. We sent out some questionnaires to people. I kept writing and eventually we ended up with a book.”

A foreword to the book, entitled CPAP and ventilator secrets, has been written by Marion’s consultant at Papworth Hospital, Dr John Shneerson.

The book looks at common non-medical problems associated with home use of ventilation machines to treat sleep apnoea and other sleep-disordered breathing problems.

There are sections on maintaining, using and travelling with the equipment, overcoming common difficulties, general health issues, including smoking, nutrition and exercise, relationships, skincare and coping with negative emotions. In addition there are photographs, anecdotes and information from other patients.

Marion’s own machine which she uses at home is a ventilator. If she doesn’t take a breath for a certain number of seconds as she sleeps, the machine will do it for her.

Ben has written the chapter on helping people cope with negative emotions as he has expertise in that area and has also had a key input into the section on relationships.

“That kind of area often tends to be skirted around,” he says. “But we decided to do something about relationships as not everyone who uses these machines is decrepit, as others often think.”

At the heart of the book is Marion’s belief that people should not be passive about their own health care.

“They should take an active part in managing it,” she says.

The children’s book the pair have also written, called A monkey, a mouse and a CPAP machine, came about because of the feedback Marion and Ben were getting from people about children’s reaction to seeing their loved ones having to use a machine to aid breathing.

The book, which is beautifully illustrated by Kristina-Rose Sears, builds on Marion’s love of monkeys and features a character called Rufus the Chatty Chimp.

The tale follows Rufus as he introduces readers to all the useful household items that help him live his life, including his CPAP machine. The idea is that the story will allay children’s fears and show them how medical machines can be part of normal every-day life for some people, whether grandparent, parent or even child.

Ben was a teenager by the time his mother started using a breathing machine so he does not remember feeling fearful about it and anyway his parents’ health issues had been part of his life for as long as he could remember.

“When I was learning to walk my father was relearning to walk because of the road accident he had been in,” he says. “I remember mum’s health was under discussion a lot and a result I developed an interest in medical matters. It was a normal thing for me. Mum’s attitude has always been very positive and led to me training in traditional Chinese medicine. It was an inspiration really.”

Now the pair, who write under the names of Marion Maz Mason and Steve B Mason, have got two books completed and on sale – they even set up their own publishing company to do so – their thoughts are turning to a third, about scoliosis.

“We’re inviting people to tell us their personal stories and hope to get that book printed next year,” says Marion. “And we’ve got some ideas for Rufus follow-ups. It could be endless really.”

n Further details about the books are available from www.asiliveandbreathe.co.uk or by contacting info@asiliveandbreathe.co.uk. CPAP and ventilator secrets (ISBN 978-0-9569455-1-8) will be published in early December. Both it and A monkey, a mouse and a CPAP machine (ISBN 978-0-9569455-0-1) are available from bookshops and online stores or by calling 0800 002 9711.