Whether Charley Hooper has any concept of the space or place she occupies in the world is an enigma.
She is so disabled that her mother considers her “unabled”.
At 10-years-old, Charley’s brain is believed to function at the same level of a newborn child.
She cannot speak, cannot walk, cannot see anything beyond light and dark and perhaps the shadowy shape of a face held inches away.
As her body grew bigger, her parents feared her world would grow smaller. How would they lift her or get her out of the house?
They saw a grim future for Charley of hoists and machinery, of isolation and loneliness, of days spent trapped in bed, staring up at a ceiling she couldn’t even see.
So Jenn and Mark Hooper came up with a radical solution. They gave their daughter hormones to stop her growth.
Then they had doctors remove her womb to spare her the pain of menstruation.
Charley is now around 1.3 metres tall (just over four feet) and 24 kilogrammes (53 pounds), and will remain like that for the rest of her life.
Every year the Hooper family escape the bleak winters at home in New Zealand by staying in Bali where the warm sun can trigger a smile. But is it a sign of joy or just a reflex?
Everything about Charley is a guess. Her parents try to interpret what she feels by the pitch and volume of her moans or whether her face is slack, smiling or contorted in a gaping yawn when she suffers through intense muscle contractions.
It’s been like this throughout her young life.
Charley was born in 2005, and came into the world floppy, grey and not breathing.
Midwives bungled their attempts to resuscitate her, and by the time specialists arrived, she had been deprived of adequate oxygen for nearly an hour.
Her brain was left irreversibly damaged.
After five months, doctors delivered the diagnosis: Infantile spasms, a severe form of epilepsy. The chances of her ever walking or talking were virtually nil. And she was blind.
Charley suffered constant seizures, and vomited everything up. Cerebral palsy weakened her throat muscles, making every swallow potentially lethal.
The Hoopers were desperate to find a way to make what they believed would make life easier for their daughter.
Then one day Jenn found an answer to their dilemma in a newspaper article about a severely disabled Seattle girl called Ashley.
This first case of growth attenuation on a disabled child popped up in a medical journal in 2006.
Ashley’s parents wanted her to remain small enough to participate in the family’s activities as she grew up.
So doctors began giving her high doses of oestrogen via skin patches, pushing her body into early puberty, accelerating the fusion of her bones and curtailing her height.
The most controversial part of the “Ashley Treatment” was the removal of her uterus and breast buds.
Her parents wanted to eliminate the pain of periods and the risk of pregnancy if she was ever abused, along with the discomfort of breasts since she spent so much time lying down and strapped into wheelchairs.
Growth attenuation, which refers only to the hormone treatment, is in itself not new.
In the 1950s and ’60s, doctors occasionally gave hormones to girls who were expected to grow very tall.
And the debate over Ashley’s hysterectomy and breast bud removal was a familiar one, given the early 20th century era of eugenics that saw tens of thousands of disabled people forcibly sterilised to prevent them from reproducing.
In 2013, the United Nations dubbed the sterilisation of the disabled without their consent “an increasingly global problem,” and last year the World Health Organisation demanded an end to it.
What is newer is the idea of stunting disabled children to ostensibly improve their lives.
More and more doctors have received requests for the treatment.
A recent survey of the Pediatric Endocrine Society, most of whose members are in the US, showed that 32 of 284 respondents have prescribed growth-stunting hormones to at least one disabled child.
But it is by no means widely accepted.
Although an increasing number of parents across the US, Europe and New Zealand consider it a medical miracle, others see the very idea of stunting and sterilising the disabled as a violation of human rights.
Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities, believes the crux of the issue is “that you’re keeping someone small for the convenience of those around them not so the individual is able to have the most fulfilling life”.
Nygren believes if there was more support for families like the Hoopers they wouldn’t need to consider something as drastic as growth attenuation.
Charley’s parents, however, believe they are doing the right thing for their daughter.
They have never been able to ask for her consent on anything. They have always had to imagine the person who exists inside her broken body, and what that person would want – and ultimately they have to decide what would be best for her.
Jenn believes they didn’t “stomp on her human rights” – and that in fact they did the opposite, giving Charley what they believe is “the right to live as good a life as she can.”
Most of all they family say the choice for Charley was made out of love.
Growth attenuation had never been performed on a disabled child in New Zealand, but the potential for a fight hardly dissuaded Jenn.
They approached Paul Hofman, a pediatric endocrinologist at Starship Children’s Hospital in Auckland, New Zealand. At first, he didn’t like the idea.
“The whole process of making a child permanently into an infant and a small child seemed wrong to me,” he remembers today.
It took just one meeting to change his mind.
He could see the Hoopers wanted to give their daughter a good life and in the end he felt growth attenuation would help her.
Hofman explained the possible risks: High blood pressure, blood clots, stroke. Then he sought an opinion from an Auckland ethics panel.
They dismissed the treatment as unnecessary.
“There are well developed ways to manage severely disabled people in New Zealand and to assist family members,” the panel wrote. “To consider alternatives raises the concern that these are less than ideal.”
Jenn was livid. Those “well-developed ways” were hardly ideal.
Few public places have equipment to move disabled people in and out of wheelchairs.
They already had to change Charley’s diapers in the car, or across the seats in a plane. What would they do when she was fully grown?
So she proposed a compromise: What if she got the estrogen patches from a doctor overseas and started the treatment outside New Zealand? Could a local doctor continue the treatment once they returned home?
The panel agreed. If Charley was already receiving a medication, local doctors should continue to treat her, for safety reasons.
It was the break the Hoopers had been waiting for.
Soon, Jenn, Mark, Zak and four-year-old Charley were on a plane to South Korea, where Jenn had found a doctor willing to give them the hormones.
Within days, the Hoopers say, they noticed changes: Her seizures stopped. She began smiling.
Her stiff limbs became more pliable. Hofman says that may be because estrogen changes neurological activity and can relax muscles.
After six months, her breast tissue began growing, then flattened.
At the age of six, she began having breakthrough bleeding, similar to what a woman can experience on birth control pills.
Concerned that Charley would have severe period pain like Jenn, the Hoopers discussed a hysterectomy with her gynecologist. She would never be able to consent to sex, they reasoned, let alone to pregnancy.
The ethics board approved the hysterectomy. Charley was seven when doctors removed her uterus.
It took nearly four years before Charley stopped growing.
Jenn says that today she sees people gain perspective just by meeting Charley.
She sees other disabled children benefit from the support wrap she designed for Charley.
She sees women helped by the advocacy group she launched to improve maternity care after Charley’s botched birth.
Most importantly the Hoopers feels that Charley is living the best life she possibly can despite her severe disabilities, joining in on holidays and being part of the family, even though she will stay a child effectively the rest of her life.