Family stunts disabled daughter's growth to expand her world

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NTP: Family stunts disabled daughter's growth to expand her world
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Family stunts disabled daughter's growth to expand her world
In this Aug. 7, 2015 photo, New Zealander Jenn Hooper holds her daughter Charley, 10, in Bali, Indonesia. As their girl's body grew bigger, her parents feared her world would grow smaller - how would they lift her or get her out of the house? So Jenn and Mark Hooper came up with a radical solution. They gave their daughter hormones to stop her growth. Charley is now around 1.3 meters tall (4 feet 3 inches) and 24 kilograms (53 pounds), and will remain so for the rest of her life. (AP Photo/Firdia Lisnawati)
In this Aug. 7, 2015 photo, New Zealander Jenn Hooper, background, plays with her baby son, Cody, and daughter, Charley, in Bali, Indonesia. 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 Charleyâs 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." (AP Photo/Firdia Lisnawati)
In this Aug. 7, 2015 photo, Jenn Hooper holds her daughter Charley in Bali, Indonesia. Jenn has spent years searching Charley's eyes for some flicker of recognition. A few times, they have locked gazes for a fraction of a second _ a precious connection, but one Jenn doubts her daughter noticed. (AP Photo/Firdia Lisnawati)
In this June 29, 2015 photo, New Zealander Charley Hooper lies on a sun lounger in Bali, Indonesia. The Hoopers' fight to get her the hormone treatment known as growth attenuation was grueling. Although an increasing number of parents across the U.S., 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. (AP Photo/Firdia Lisnawati)
In this Aug. 12, 2015 photo, Jenn, left, and Mark Hooper sit for a photo with their three children, from left, Cody, Zak and Charley in Bali, Indonesia. Mark quit his job as an architectural draftsman to help Jenn with the kids. They get by on a government-funded insurance program that supports at-home caregivers, and sales of a torso support wrap Jenn designed for disabled children. (AP Photo/Firdia Lisnawati)
In this June 29, 2015 photo, New Zealander Charley Hooper has her fingernails painted in Bali, Indonesia. Though Mark and Jenn don't believe she has any concept of her mortality, they try not to talk about it in front of her, out of respect. "We don't expect her to live forever. We don't want her to live forever. Who wants this life forever?" Jenn says. "So we give her the best life we can while we've got her." (AP Photo/Firdia Lisnawati)
In this June 29, 2015 photo, New Zealander Mark Hooper, center, plays with his daughter, Charley, and son Zak, right, as his youngest son Cody, left, is carried by a nanny in Bali, Indonesia. The Hoopers' fight to get her the hormone treatment known as growth attenuation was grueling. Although an increasing number of parents across the U.S., 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. (AP Photo/Firdia Lisnawati)
In this June 29, 2015, photo, New Zealander Mark Hooper carries his daughter Charley in Bali, Indonesia. Due to her disability, the Hoopers' decided to give Charley, now 10 years old, a hormone treatment to stop her growth which is considered as a medical miracle by increasing number of parents across the U.S., Europe and New Zealand. Others, on the other hand, see that the very idea of stunting and sterilizing the disabled as a violation of human rights. (AP Photo/Firdia Lisnawati)
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BALI, Indonesia (AP) — Charley Hooper is so disabled that her mother considers her "unabled."

At 10, she cannot speak, walk or see anything beyond light and dark and perhaps the shadowy shape of a face held inches away. As she grew bigger, her parents feared she would eventually become too heavy to take anywhere.

So Jenn and Mark Hooper came up with a radical solution. The New Zealand couple 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 (4 foot 3) and 24 kilograms (53 pounds), and will remain so for the rest of her life.

A small but increasing number of families across the U.S., Europe and New Zealand are turning to what is known as growth attenuation in an attempt to improve the lives of their disabled children. The practice is highly controversial: Many see the very idea of stunting and sterilizing the disabled as a violation of human rights. But parents such as the Hoopers say it helps their children preserve their quality of life.

"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."

Back in the 1950s and 60s, growth attenuation — which refers only to the hormone treatment — was sometimes prescribed for girls who were expected to grow very tall. But the first known case of stunting a disabled child to ostensibly improve her life popped up in a medical journal in 2006. A Seattle couple wanted to keep their daughter, Ashley, small enough to participate in family activities as she grew up. So doctors gave her high doses of hormones that pushed her body into early puberty and stunted her growth, and removed her uterus and breast buds to prevent discomfort.

More and more doctors have since received requests for growth attenuation. In a recent survey of the Pediatric Endocrine Society, most of whose members are in the U.S., 32 of 284 respondents said they had prescribed growth-stunting hormones to at least one disabled child.

But the practice is by no means widely accepted. Many doctors consider the treatment invasive and unnecessary, and refuse to prescribe it. The public, too, often reacts 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?"

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 what their daughter would want.

Charley is a jumble of uncontrolled limbs with a floppy head that needs supporting. Her parents try to interpret what she feels by the pitch and volume of her moans, and whether her freckled face is relaxed or contorted in a gaping yawn because of intense muscle contractions. The warm sun on her skin can trigger a smile, but is it a sign of joy or a reflex?

After reading about Ashley, they convinced Paul Hofman, a pediatric endocrinologist in Auckland, New Zealand, that stunting Charley would help her. But the local ethics board dismissed the treatment as unnecessary.

So Jenn proposed a compromise: If she started the treatment outside New Zealand, could local doctors continue it at home?

The board said yes. The family found a doctor in South Korea who gave them the hormones.

Within days, they say, her seizures stopped and her stiff limbs became more pliable. Hofman says that may be because estrogen changes neurological activity and can relax muscles.

At 6, she began bleeding now and then in the way women sometimes do on birth control pills. Worried that she would have severe period pain like Jenn, the Hoopers discussed a hysterectomy. She would never be able to consent to sex, they reasoned, let alone to pregnancy.

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

It took nearly four years before she stopped growing.

Today, Charley joins her family on trips to the mall and vacations to Bali. Her parents soothe her by cuddling her in their laps and carrying her in their arms. None of that would be possible, they say, if she was bigger.

When Charley was 5, she almost died from a chest infection. Jenn began to wonder what they would say at her funeral; they couldn't talk about her laughter or her favorite games. So they wrote up a bucket list for Charley with experiences they imagined a little girl would enjoy: Being a flower girl, meeting the Queen.

Would she actually like those things? They don't know. But they believe she'd prefer checking items off the list to being stuck at home.

"We don't expect her to live forever. We don't want her to live forever. Who wants this life forever?" Jenn says. "So we give her the best life we can while we've got her."

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