The ordeal and triumph of a family struck by GSK’s narcolepsy-inducing Pandemrix
By Celeste McGovern
Claire Crisp watched her three-year-old daughter bump down the stairs in her PJs dotted with blue Easter bunnies. Little Mathilda stood unsteadily on the kitchen tiles, the sun streaming in the window behind her, her lids heavy on her blue eyes, her blonde hair matted from sleep though it was mid-day. She reached her hands out and pleaded softly, “Mu-uh-Ma,” then crumpled to the floor.
Claire shouted and rushed to her daughter. She could see she was breathing but she was unresponsive and as limp as a rag doll. It didn’t look like a seizure but she couldn’t tell if her littlest child was conscious.
Tilda’s sudden bizarre collapses were becoming more frequent and they were just one of a growing list of terrifying symptoms that had begun in recent weeks. She used to sleep soundly but now she had night terrors and woke inconsolable, sometimes 30 or more times each night. She used to be so bubbly and engaging but now she slept for hours of the day, but she never woke refreshed. So exhausted, the little girl who had been bright and polite was grouchy and prone to tantrums. She complained of excruciating pain in her joints. There were disturbing neurological symptoms too; muscle weakness and head-bobbing so she sometimes looked like a dashboard doll. She had begun rolling her tongue around inside her bottom lip compulsively. Worst of all, little Mathilda, pale and dishevelled, was becoming increasingly remote and withdrawn so Claire felt her daughter was vanishing before her eyes.
The ordeal is recounted in the award-winning non-fiction book, Waking Mathilda: A Memoir of Childhood Narcolepsy. It is really a memoir of a mother struggling within a seriously flawed medical system to find out what is wrong with her daughter, to help her, to hold her family together through the onset of life-changing chronic illness and to keep her faith, and her sanity.
Her daughter, she eventually discovers through heroic perseverance, is the youngest known patient in the world to have developed the devastating sleep disorder. Once extremely rare, narcolepsy suddenly spiked in the wake of the overhyped 2009/2010 swine flu epidemic that failed to materialize. Mathilda was one of at least 1,500 people, mostly children, in whom GlaxoSmithKline’s Pandemrix vaccine triggered an autoimmune assault on a hub of neurons that control sleep and wakefulness. It left her peculiarly brain-damaged by an ongoing immune inflammation.
Epidemiological studies confirmed the uptick of cases and the Pandemrix vaccine was linked to a 13-fold higher risk of the sleep disorder which was also found in multiple countries where it was distributed. Pandemrix was pulled from the market then but the damage was already done and the greatest profits had been reaped.
For Mathilda and her family, the symptoms began within a few weeks of the shot but it was months and repeated visits to the Bristol Children’s hospital desperately seeking answers and the chance encounter with a diligent visiting doctor from India that got her diagnosis.
On the way, Claire discovered the gaps – or rather, the yawning chasms – in the medical system. Tilly’s slurred speech, her wobbly gait and sudden incontinent and sleepiness, for example, saw her quickly admitted to hospital because doctors suspected a cerebellar tumour. But when the scan came back clear, Mathilda was discharged. Their one theory shot down, the doctors sent the neurologically-impaired girl and her exhausted, worried mother home, with all the same symptoms they’d deemed urgent just hours before, without answers or further investigation.
The book is not a flattering snapshot of the UK’s publicly funded National Health Service: neurologists are unable to find a reflex hammer anywhere in a children’s hospital. Irritable nurses rig the little girl up uncomfortably to a black box for a round of sleep tests one night, but the box and its data disappear into the vortex of public health indifference and lost patient information.
Claire may portray these weaknesses as a unique feature of British public health, but any American parent that has watched their baby regress into autism or their teenager damaged by the HPV vaccine may describe similar problems with their system. Current medicine has a gigantic blind spot for damage to a hyper-stimulated immune system.
Mathilda’s story exposes the arrogance of medical practice, too. Claire learns that “there is a fine line between being a caring, responsible parent and an intense, overanxious one” and she has to tread carefully and measure her words to not set egos flaring and preserve her daughter’s care.
Like popular teenagers that turn bully when their hollowness or inadequacies are exposed, doctors can get mean. When the team of neurologists can’t diagnose Mathilda’s trouble, they send a preppy young intern to coldly announce that Tilly has a behavior problem and Claire herself is referred with her daughter for psychiatric examination. The horror of this settles on Claire who realizes that her daughter, “with a label she would probably never shake off, would sink in the quicksand of medication for the mentally ill.”
This happens to the child of two highly educated people (Claire was a physiotherapist and Mathilda’s father, Oliver, is a theology professor) who are fighting hard for their child. Reading this book, you have to wonder how many other narcolepsy patients have slipped through the nets, undiagnosed, and are languishing in drug comas in the psychiatric wards of the world. And there is the unspoken question of the reason for all the packed children’s hospital wards in the book. Another mother of a seriously neurologically ill child presents a horrifying statistic to Claire on one of her first visits to the hospital: 40 percent of pediatric neurology cases are undiagnosed. How often do these illnesses get investigated by immunologists and how infrequently do they even ask the vaccine question?
By curious acts of providence, Mathilda’s diagnosis is eventually given and the vaccine cause of her injury is found. Rather than being remorseful and eager to rectify the public health injury, however, the system and the doctors seem completely indifferent and oblivious to the horror of this torment on the family. To the fact that a three-year-old girl has been struck by a condition that has literally robbed her of joy (She falls into a paralytic cataplexy every time she feels the emotion of happiness.) This child suffers the grotesque hallucinations of sleep paralysis because she was given a vaccine that was never tested on children. For a ‘false pandemic’ that did not happen.
Claire recounts the scene at the prestigious Oxford University hospital where the top sleep expert in the UK refused the most promising treatment available, a drug called Xyrem that allows patients to sleep and instead admonishes the couple to learn better parenting techniques and behavioral control of their immunologically and brain injured daughter.
The book doesn’t wade into the vaccine debate or discuss the larger significance of the swine-flu vaccine/ narcolepsy connection or the fact that Pandemrix was also epidemiologically linked to autoimmune or Juvenile Type 1 diabetes.
Readers should be able to see the blindness of doctors and a public system which fails to recognize that if a single vaccine can cause this unexpected, profound and sustained type of immune and brain assault in some genetically susceptible people, then it is not so inconceivable that a string of vaccines could induce autism. Or that other proteins in other vaccines could induce other types of autoimmunity in people with different genetics.
Claire doesn’t discuss other narcolepsy vaccine cases. There are hundreds who experience what Katie Clack could not cope with. She was the 23-year-old pediatric nurse forced to get the vaccine in 2009 whose consequent narcolepsy led to 19-hour sleep marathons and severe depression that caused her to jump from a shopping centre car park roof to her death in 2014.
The book does not discuss the ongoing battle with the UK government, that Mathilda Crisp is one of 80 or so patients jointly suing the Department for Works and Pensions which has fought tooth and nail against offering even the meagre compensation pay-out to the vaccine-damaged children. Narcolepsy is not disabling enough a condition to qualify, the agency has argued, which makes you wonder what level of Hell they think is sufficiently torturous for children to deserve the paltry compensation. And what sort of government is this stingy towards injured children yet willing to dole billions to the pharmaceutical companies who made the injuring drugs?
The book is not about vaccines at all really, although there would be no tragedy to tell without the one Mathilda received. Every mother of a vaccine-injured child will relate to Claire’s depression borne of grief, and guilt. “Many times I have imagined myself ripping the kitchen clock off the wall and turning back the hands of time, taking her to the candy store, the park, anywhere but to the clinic that would ruin her life,” she writes. “She trusted me, and I in turn foolishly trusted in a system that was supposed to keep her safe.”
Thousands of parents who have struggled with any chronically ill child, who have felt that hand Claire Crisp describes, reaching into their chest to physically rip their heart while they watch their child suffer and they can do nothing to stop it, will draw something from this narrative.
Waking Mathilda should be required reading for pro-vaxxers who think vaccine-induced brain injury is a fiction, and for doctors; those steeped in the decaying current paradigm as well as those in the emerging integrative and functional systems which are just as much in danger of losing touch with where their patients are coming from and the causes of the epidemics they are treating.
Waking Mathilda is mostly the personal story of a very likeable woman, a resilient child and an endearing family and how they cope with a tragedy foisted on their world by a beast of a machine. “For the British government and GSK, it was another pharmacological headache. For hundreds of children and families, it became a personal tragedy,” Claire writes.
Ultimately, it is a story of triumph, of a family that has come out the other side of tragedy. They defied the system and moved across the world to California’s sunshine to give their daughter treatments the UK would not provide. With medication, Mathilda is able to sleep in three-hour blocks and to stay awake and is learning and active. Her “new normal” is not what Claire would ever have chosen but she is transformed by her journey and has profound insights to offer readers. Best of all, she offers the possibility of what she and her family seem to have found again: hope and joy.