Whether Charley Hooper has any concept of the space she occupies in the world is an enigma.

She is so disabled that her mother considers her “unabled.” 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 meters tall and 24 kilograms, and will remain so for the rest of her life.

The Hoopers’ fight to get the hormone treatment — known as growth attenuation — was grueling. 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 sterilizing 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.

Controversial choice

They 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. For years, they lived in the UK, working in pubs and driving forklifts to fund their travels through Europe and Africa.

After returning home to New Zealand’s North Island, they began trying again for a baby and were on the verge of attempting in vitro fertilization 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.

They waited for that moment parents rhapsodize about — when your baby first looks into your eyes. But Charley’s eyes rolled aimlessly in their sockets.

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?

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.

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 sterilized to prevent them from reproducing. In 2013, the United Nations dubbed the sterilization of the disabled without their consent “an increasingly global problem,” and last year the World Health Organization 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. Many doctors have refused to prescribe the treatment, and those who do tend to do so quietly.

Gary Butler, chairman of the European Society for Pediatric Endocrinology’s clinical practice committee, feels there is no need to stunt the growth of severely disabled children because they often enter puberty early, which naturally leaves them smaller.

“We would never, ever resort to these invasive treatments,” Butler says. “It’s completely unnecessary and I think it’s important that one upholds the dignity and the rights of young people with a learning disability and physical disability.”

The public, too, often reacts to the treatment with everything from unease to revulsion. After all, in many families, growth is about so much more than size.

“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?”

Changed minds

Yet for Charley’s parents, that question is moot, because they have never been able to ask for her consent on anything. 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 4-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 6, she began having breakthrough bleeding, similar to what a woman can experience on birth control pills.

The ethics board approved the hysterectomy. Charley was 7 when doctors removed her uterus.

Jenn 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.

“Life isn’t about being successful, it’s about being significant. And she’s certainly significant,” Jenn says. “So many others aren’t, because they’re never seen. We make sure she is.”