WHETHER CHARLEY HOOPER has any concept of the space she occupies in the world is an enigma.
At 10, her brain is believed to function at the level of a newborn’s. 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 for Charley a grim future 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 (4 foot 3) and 24 kilos (53 pounds), and will remain so for the rest of her life.
The Hoopers’ fight to get the hormone treatment — known as growth attenuation — was gruelling.
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.
A doctor once told Jenn he would never do such a thing to his child. Well, aren’t you lucky, Jenn replied, that you never had to make that choice.
Difficulties
She and Mark had wanted a baby so badly for so long. The former high school sweethearts had always assumed they’d have children.
They married in 1991 and began trying to get pregnant right away. But when years passed and no babies came, they headed overseas in search of other adventures.
After returning home to New Zealand’s North Island, they began trying again for a baby and were on the verge of attempting IVF when Jenn took a pregnancy test on Christmas Day, 2004. It was positive.
Charley came into the world floppy 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.
The first few months were misery. Charley screamed around the clock.
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.
Jenn and Mark barely slept, checking her throughout the night to ensure she hadn’t choked to death. There were dark moments when they wondered whether it might be better for her if she did die.
Valium helped quiet her screams. And they found other ways to soothe her: bouncing her on their knees, giving her warm baths.
But eventually, they knew she would be too big to hold or lift from the tub. In a life of so few joys, what then?
Controversy
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 estrogen 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 Organization demanded an end to it.
Unease
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. Many doctors have refused to prescribe the treatment, and those who do tend to do so quietly.
The public, too, often reacts to the treatment with everything from unease to revulsion.
“People are really entitled to grow and to become the people they were meant to be,” says Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities.
Would you ever want this kind of treatment done to you without your consent or knowledge? And if the answer is no, then why would one want to do that to someone else?
Love
Yet for Charley’s parents, that question is moot, because 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.
Like most parents, they believe their daughter would want an extraordinary life. So in many ways, it comes down to this: What makes a life worth living, and what is a life worth?
To Jenn, a person’s life is a collection of experiences, stories and memories. Charley can’t make those for herself, so her parents wanted to make them for her — from taking her sledding to travelling the world.
But that meant keeping her small enough to go along for the ride.
The choice they made for Charley, they say, was a choice made out of love.
“We haven’t stopped her doing anything. Growing would have stopped her doing things,” Jenn says.
We didn’t take away any choices that weren’t already taken from her.
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, but 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.
After an Auckland ethics panel ruled that the treatment could only be started outside New Zealand, Jenn, Mark, Zak and 4-year-old Charley were on a plane to South Korea, where Jenn had found a doctor willing to give them the hormones.
Changes
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 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 7 when doctors removed her uterus.
“I knew it was the right thing to do, but it was hard,” Jenn says. “There was sort of a finality to it.”
It took nearly four years before Charley stopped growing.
Detached
Jenn sits next to her daughter, whose body lies immobile near the pool. She tickles Charley’s nose with one of her braids and brushes the bangs from her eyes.
Jenn has spent years searching those eyes for some flicker of recognition. A few times, Charley has locked gazes for a fraction of a second — a precious connection, but one Jenn doubts her daughter noticed.
She has never bonded with Charley the way Mark has. To Mark, Charley is his daughter. To Jenn, she is more like a patient. That’s largely because she has spent so much time focused on Charley’s survival.
She loves her, but in a slightly detached sense, the way an aunt might love a niece.
Some mornings, in the hazy seconds after waking, Jenn hears a child’s footsteps outside her room. It is always Zak, but in her half-conscious state, there’s a magical moment when she wonders if it’s Charley.
She and Mark still get up throughout the night to ensure Charley is breathing. Mark eventually quit his job as an architectural draftsman to help Jenn with the kids.
They get by on a government-funded insurance programme that supports at-home caregivers, and sales of a torso support wrap Jenn designed for disabled children.
Jenn has concluded that Charley has no idea she is her mother. Mark believes she recognises them — at least, he likes to think she does.
This is perhaps the biggest issue brought up by those who oppose growth attenuation: How does anyone know what goes on in a profoundly disabled person’s mind?
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