By Stephen Venables
link available). This is the lead article in Mail on
Sunday - Review, UK and covers 4 pages with more promised for next week.
As soon as
15-month-old Oliver was given
an MMR jab, he was stricken by illness. Here mountaineer Stephen
Venables describes his desperate fight to save the life of his son.
after shaded text.]
We buried him on the last day of
October, a day of low clouds scudding through a sodden sky. The
matting draped over the mound of excavated earth was a luminous
green and the grass underfoot was cold and dank where Edmond, Rosie and
I - brother, mother and father - stood beside the grave, flinching at
the finality of those ancient words: ‘Earth to earth, ashes to ashes,
dust to dust.’ Echoing their elemental truth, the coffin settled in its
bed, oak reverberating on rock.
Like the swallows, Ollie arrived in the
spring and left in the autumn. In between, we joined him on a journey
which lasted 12 years and four months.
At first we called him by his full name,
Oliver. I liked the unhurried resonance of those three soft syllables
and it was only after something happened in his brain, upsetting
the subtle balance of sensory perceptions to the point where language
became almost impossible for him to process, that we changed to the
simpler ‘Ollie’, so much easier to hear and to say.
Now that perky, staccato name seems
inseparable from the boy we loved, synonymous with the laughter he
brought to our lives. Inseparable, too, from a kind of radiance; an
innate joyfulness which was never quashed despite the huge challenges
he had to face. So, as I try to tell the story of how he grappled with
those challenges, I shall call him Ollie.
He was born at the Royal United
Hospital, Bath, on June 6, 1991. He weighed 61b 5oz; a touch thin,
but nothing to be alarmed about. After nine months’ waiting, Rosie
and I had imagined that we knew him already, but this person was a
complete stranger. He peered uncomprehendingly at us and we stared
back at his crumpled brow and unsmiling eyes. It had been a difficult
delivery, but after three days the doctors announced he was healthy and
we could all go home to our house in Larkhall, just outside Bath.
Our love for him, hesitant at first,
burst into flower. We watched his eyes brighten and focus, while his
smile seemed to have a special intensity, engaging robustly with the
world. Soon that smile became a laugh. For him the world was a funny
place, full of delight. And the more he delighted in the world, the
more we delighted in him.
The first signs of the catastrophe that
would envelop our lives came a few days before Ollie was christened. He
was 15 months old when Rosie took him to the local clinic for his
vaccination against measles, mumps and rubella.
While I would learn much more about MMR,
at the time I was hardly aware of its existence.
It had never occurred to me that anyone
would want to vaccinate children against the common childhood illnesses
I and my brothers and sisters had experienced without problems.
Rosie was unsure whether Ollie should
have the MMR, but our health visitor said measles was extremely
dangerous: how would Rosie feel if he became blind or suffered
brain damage? And what about her responsibility to the
community: her son’s part in the ‘herd immunity’ which was designed to
ensure against outbreaks?
The health visitor was just doing her
job, relaying Department of Health policy. However, looking later at
official pronouncements on childhood diseases, I felt the whole
perception of risk had been changed, as if to justify the blanket
MMR coverage introduced in 1988.
For an intelligent, responsible mother
like Rosie, the assumption that she should bow to a uniform policy and
inject three live viruses simultaneously into her precious
15-month-old child was hard to stomach. But the scare tactics wore her
down and she took Ollie to the clinic.
The first night after the jab, Ollie ran
a temperature and had nightmares.
For a fortnight he remained
intermittently ill and the night terrors continued. He also began to
develop a slight tremor in his right hand. Over the next few months his
medical notes recorded a worrying ‘malaise’ and he suffered from a
succession of viral infections.
We still cannot be sure whether the MMR
vaccine did lasting damage. But, at the time, all Rosie knew was that
Ollie was not the same healthy child he had been before. At first, he
was fine most of the time. He was a bright, alert, laughing personality
who filled our lives with pleasure. He was learning to talk and
count and was full of curiosity. But in the summer of 1993, when he was
two, his intellectual development began to regress.
When we holidayed with friends he
appeared disconnected, either not comprehending what we were all up to,
or wilfully going his own way. Rosie became alarmed by his increasing
bouts of trembling and thirst. She noticed that his speech diminished
during these episodes and wondered whether he was diabetic, but a urine
test proved negative.
By New Year, 1994, Ollie’s bubbling
eagerness was being stifled by an unsettling rigidity. He arranged his
toy cars meticulously on the arm of the sofa, head sideways, sighting
out of the corner of his eye. His pronunciation became distorted -
‘duck’ became ‘dawk’, ‘darling’ became ‘dorning’ -and his vocabulary
dwindled. We watched helplessly as learning and language evaporated,
like files vanishing from the screen of a corrupted computer.
He was enslaved by distressing phobias,
the vacuum cleaner reducing him to screaming terror. While his younger
brother Edmond flourished, Ollie was drifting away into a parallel,
In April, Rosie took Ollie to see a
paediatrician. He came swiftly to the point: as far as he could tell,
Ollie was autistic. We walked out into the bright blossom-scented
afternoon, strapped our unique, precious, clever, beautiful son into
his child seat and drove slowly home to start our new life in a foreign
country called Autism.
As we did our best to navigate through
this country, we learned that autism covers a vast spectrum.
Nevertheless all autistic people have a fundamental difficulty with
communication. They may retreat into repetitive behaviour and are prone
to overwhelming fears and phobias.
No one knows what mechanisms alter the
minds of autistic children, but something appears to go wrong with the
brain circuitry, possibly caused by toxins. The result, in Ollie’s
case, was that his whole sensory and intellectual perception were
skewed, so that the people and the world around him became
frighteningly powers of speech. As we struggled to come to terms with
all of this, we had to adopt split personalities. However much we
wanted to fight Ollie’s condition, we had to learn to live with it.
We had to learn to love the new Ollie
and his bizarre ways, while cherishing the affectionate, funny,
sensitive, mischievous soul of the old Ollie which continued to shine
through the distorting fog of autism.
When we went on holiday to France he
screamed frantically in our cabin on the ferry, apparently
frightened by the dark confinement. When I took him on to the
upper deck, he laughed and shouted, enthralled by the wind and the sky,
and tried to climb out of my arms and hurl himself into the sea.
Of course we did all we could to see if
there was any way to reverse the damage that Ollie had suffered. We
tried so many things, from vitamin supplements and enzymes to a
glutenfree diet. Most rewarding was the educational therapy
technique developed by a Norwegian psychologist named Ivar Lovaas,
aimed at helping children to relearn the language that had become so
alien to them.
The search for funds immersed us in a
world of bureaucracy and regulations as we lobbied and pestered our
local authorities to help pay for Ollie’s treatment. Much of the
burden fell on Rosie, as my work as a mountaineer took me abroad for
weeks at a time, writing, making television films, promoting books,
doing corporate lectures, even climbing the occasional mountain; I was
one of the very few to have conquered Everest without oxygen.
The Lovaas technique seemed
effective and Ollie’s comprehension and matching skills appeared
to blossom, and with them his confidence and happiness. Life was
hopeful again, and as Ollie took the first tentative steps back to
speech, he was clearly enjoying his own success.
At times he drew in on himself to escape
all that was noisy, threatening or bewildering. But when he
responded to our efforts and smiled delightedly at his achievements, it
all seemed worthwhile. He went swimming once a week and rode
Shetland ponies with Edmond and my mother. Ollie rode with natural
ease, but he frequently jumped off without warning, as if he were
riding a tricycle.
Then, at Christmas 1995, everything
changed again. Ollie had fallen down some steps, hurting his leg. He
had an X-ray which suggested he was OK, but both his legs began to
ache. Rosie tried to take him for a walk, hoping that air and exercise
might cheer him up. He kept stopping, and years later Rosie reproached
herself for making him continue: ‘He kept wanting, me to carry him.
Then he burst into tears, crying and crying, and I realised he must be
in terrible pain.’
Back at home he collapsed into bed,
refusing food. When the doctor came, Ollie was unable to tell him what
was wrong, but his eyes seemed infinitely sad, his face was pale and
his legs pitifully thin and bruised. He was taken into hospital,
while I went to Scotland for work. I was still away when I had a call
from Rosie who broke it to me very calmly, very gently: ‘Hello
darling. I’m afraid Ollie has leukaemia.’
My first response was disbelief that
this could be happening to our son, on top of all he already had to
endure. I hurried to the children’s hospital in Bristol to meet Rosie.
Ollie lay sleeping in a darkened room, attached to drips. I stroked his
frail, vulnerable body and then we left him in peace.
The consultant told us Ollie had
acute lymphoblastic leukaemia, the most common childhood form of
the disease, for which the prognosis was good: about 70 per cent of
children pulled through.
On his first night in the oncology unit,
I stayed with Ollie to watch over him while Rosie returned to look
after our neglected second son. I was desperately tired but he
remained resolutely awake, lying in the semi-darkness, plugged into his
transfusion line. He was terribly weak and I longed to fold his frail
body protectively in my arms, but knew he would hate that as he did not
like to be picked up.
Then came the ordeal of the
treatment. As with most cancers, the mainstay was a cocktail
of cytotoxic drugs targeted at the rogue blood cells - chemotherapy -
coupled with blood transfusions. Ollie had to face the repeated trauma
of needles piercing hands and arms, together with a baffling new
world of strange faces, bright lights, noisy machinery, crying children
and chemical smells.
His treatment was easier when he was
fitted with a portacath, a device to facilitate injections. But his
progress had to be monitored with lumbar punctures, which meant he had
to lie perfectly still while the needle was inserted into the small of
his back. At first he was sedated, but on the third occasion it induced
a fit and from then on he had to have a full anaesthetic.
So once a month he had to be deprived of
food and drink, sedated and wheeled into theatre, where I would play
one of his soothing music tapes, stroke his head and cradle its sudden
weight as the anaesthetic took effect. I left him to the experts,
returning as he regained consciousness in the recovery room All
this Ollie had to endure without, as far as we could tell, any
understanding of why it was being done to him - and unable to tell us
how he was feeling.
Photos from those days show Ollie with a
bald head - a side effect of chemotherapy - and sitting in the unit’s
family room, his huge dark eyes staring sadly from deep sockets.
Sometimes we would eat together and Rosie would settle him into his
hospital bed, say his prayers, kiss him goodnight and take Edmond
home. I would sit for ages beside him and on one occasion I tried
surreptitiously reading but when I moved my hand to turn the page Ollie
held out his thin weak arm as if to say: ‘Don’t move - stay exactly as
After a while Ollie came home, returning
to the hospital at regular intervals for his treatment. Eventually all
this paid off. The chemotherapy appeared to be working and the
consultants told us the cancer was in remission.
As for his autism, Ollie seemed to be
making progress. He could emulate some sounds when we coaxed him -
‘bheez’ for ‘please’ - and he would daub additions to his brother’s
paintings. When we all sang Happy Birthday on his fifth
birthday he laughed joyfully and ran out into the garden.
In September 1996 it was time for
school. A local primary school had a unit for autistic children and we
took Ollie for an introductory visit. A new layer of soft, velvet hair
now covered his head, but he still looked very fragile, riding a
tricycle round the playground.
For Rosie it was another terrible
wrench, handing this vulnerable child over to strangers. But he
alternated between school and home, where we had a series of helpers
who shared his care. He loved physical activities, boisterously playing
with his helpers, climbing the trees in our garden, even though I had
had to surround it with a seven-foot fence as he would run away at any
As summer 1997 approached we felt
cautiously optimistic. Ollie was faring as well as could be expected at
school, and his leukaemia had been in remission for a year.
But then came news of Ollie’s latest tests. It was as bad as it could
be: leukaemia cells had been found in his spinal fluid.
We faced a terrible decision. He
could start a new two-year course of radical and aggressive
treatment, including repeated chemotherapy injections and
high doses of radiation to his spine and brain. The prospects of
success, the consultant told us, were around one in five. The
alternative was to let him die.
It seemed impossible that a death
sentence hung over this ebullient child.
During the weekend Rosie and I grappled
with our predicament. I felt we had to respect Ollie’s joyfulness. He
had an extraordinary ability to bounce back from pain and suffering, to
seize enjoyment, to grasp life. I argued that we had to take the chance
of success. Rosie was reluctant, desperate to spare Ollie more
pain, but in the end that is what we decided: we would go ahead with
That summer was dominated by Ollie’s
oscillating health. When the chemotherapy regime allowed it, Ollie went
to school, but he was now struggling to cope with its demands. Some of
his fellow pupils had extensive speech and were beginning to spend
time in the mainstream school.
But even tasks such as simple jigsaws
seemed to defeat him, and the frustration made him tearful.
Nausea, itching and stabbing pains, induced by cytotoxic drugs,
intensified the frustration.
At home, banging his fists against the
side of his head, he would advance on Edmond, grinding his teeth,
pressing his face angrily against his brother’s.
Several times, thwarted over forbidden
food or a locked cupboard, he tried to bite us. The best response was
calm avoidance, holding his arms firmly, and manoeuvring him to a
quiet place where he could sit and recover. Rosie would gently stroke
his head and Edmond would often sit with him too, comforting his elder
As 1997 came to a close, there was a
pervasive sense of struggle; of Ollie finding everything too difficult.
He seemed increasingly distressed by attempts to make him conform to
‘normal’ life. For all his efforts at school it was too much for him.
His illness hadn’t just destroyed skills. Its relentless assault on
mind and body seemed to have beaten down even Ollie’s boisterous
Most distressing of all was his soured
relationship with Rosie. At times he could hardly bear to look at her,
perhaps blaming her for all the frightening treatments inflicted on him
over the past two years. It was hard not to feel bitter when we learned
about other autistic children progressing. With Ollie we were
simply surviving from day to day, just trying to make life
bearable for him, not knowing how long that life was likely to
But Rosie was not to be defeated. Ever
determined and resourceful, she found a new education programme
based on trying to enter the autistic child’s world and reinforce
his every positive move. We decided to withdraw Ollie from school and
care for him at home. We designed a special Ollie-proof room that was
his private haven and enlisted a new roster of helpers, paid for by a
mix of local-authority funds and donations from charity.
We played with him, doing our best to
encourage and reassure him. He might romp with me or one of the team,
or spend two hours sitting on a shelf staring down at one of our
helpers. We rejoiced at his increasing ability to accept strangers into
his life, his faith in fellow human beings restored.
He became more confident and more
playful. During his now rare visits to hospital, as the leukaemia
treatment approached its end, doctors and nurses commented on his
increasing eye contact.
In March 1999 came more reason to hope.
His cancer consultant told us it was time to stop treatment. The course
was complete, although he would continue to have occasional blood
checks. We all knew the odds on another relapse were high. But for the
moment Ollie was free from the relentless cycle of oncology. He
looked fit and strong and we had to base our life on the assumption he
would stay that way.
Throughout this time I had been making
videos of him, recording what are now treasured moments in his life;
the setbacks and the progress. One sequence captures his delight at
birdsong and light shining through an empty bottle.
In another, Rosie takes his feet in her
hands and jiggles them. Then Ollie flings himself into the foetal
position. Rosie lies behind him, snuggled into the same position. Then
suddenly Ollie leaps to his feet and a new activity begins.
This was a child who six years
earlier, before neural unravelling set in, had been talking in
sentences and starting to read. On the face of it we had little
progress to report. There had been no sudden, Biblical bursting back
into speech - barely even a repeat of the incremental learning achieved
during the behavioural Lovaas experiment. But we had to avoid such
comparisons - forget about who Ollie wasn’t and celebrate who he
We had to admire his serenity and
emulate his delight in tiny, apparently inconsequential details. We had
to cherish his laughter, thank him for every smile. And applaud his
gigantic efforts to articulate words as he tried so hard to make the
connections between brain and facial muscles.
Above all we had to be thankful that,
after the trials of the past three years, he seemed happy.
Adapted from Ollie, by Stephen
Venables, published by Hutchinson on March 16 at £14.99. To order
your copy for £11.99 plus £1.95 p&p, call the Review
Bookstore on 0870 165 0870
NEXT WEEK: ‘No more needles. I
don’t want him to suffer any more.’