Daughter's growth stunted to expand her world
In order to provide their severely disabled daughter Charley with a more fulfilling life, a New Zealand family has chosen to stunt her growth.
Charley Hooper is 1.3 metres long - "long" not "tall," her mother says, because she cannot stand on her own. She weighs 24 kilograms.
At 10, she has stopped growing. Her parents worked hard to ensure this happens, giving her hormones during the past several years to stunt her growth.
"We had an inkling of what life would be like for her," her mother, Jenn Hooper, 44, said.
"I thought: if I was stuck in a newborn baby's body, what would I prefer? Would I prefer to be hoisted or would I prefer to be held and comforted and carried?
"It came down to two questions: is there anything she would gain by being allowed to grow big, or is there anything she would lose by being allowed to stay smaller?" For both questions, Mrs Hooper said, the answer was "no".
A botched birth left Charley with a massive brain injury. She cannot see or speak, nor sit or stand. She cannot chew her meals; she pushes them down her throat with her tongue.
"We haven't stopped her doing things. Growing would have stopped her doing things," Mrs Hooper said. "We didn't take away any choices that weren't already taken from her."
It started in 2007 when the couple, from Hamilton, New Zealand, read a newspaper article about a severely disabled girl in Seattle who had undergone growth attenuation, a controversial medical practice that involves administering estrogen to stop bone growth. Doctors gave the girl hormones and then removed her womb and breast buds to keep her from experiencing menstrual pain, according to a diagram on her website.
In a recent survey from the Pediatric Endocrine Society, 32 of the 284 physicians who responded said they had prescribed such treatment to at least one disabled child.
But medical ethics remain a primary concern.
The American Association on Intellectual and Developmental Disabilities has called the practice "ethics-attenuation intervention".
In its position statement, the association's board condemned it, claiming it creates unnecessary risks for questionable rewards.
"We are stunned and outraged by the very fact that the relative merits of growth attenuation could still be, in 2012, a topic for serious discussion in any reasonable forum," it said.
But for the Hoopers, growth attenuation made sense.
After reading about Ashley, they convinced Paul Hofman, a paediatric endocrinologist in Auckland that stunting Charley would help her. But the local ethics board dismissed the treatment as unnecessary.
So Mrs Hooper 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, her seizures stopped and her stiff limbs became more pliable. Dr Hofman said that might be because estrogen changes neurological activity and can relax muscles.
At six, she began bleeding in the way women sometimes do on birth control pills. Worried that she would have severe period pain, 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 seven when doctors removed her uterus.
It took nearly four years before she stopped growing.
To her parents, Charley was in many ways a miracle child. Mark and Jenn Hooper had been trying to have a baby for eight years when Mrs Hooper discovered she was pregnant. Throughout her term, she kept a video journal, chronicling every moment - up until the one when her water broke. She hoped to show it to her daughter one day - but she never would.
On September 7, 2005, Charley was born "dark grey in colour, floppy and making gasping movements", according to a report from New Zealand's Health and Disability Commissioner. She was not breathing and, Mrs Hooper said, the midwives who delivered her botched the resuscitation - first forgetting to clear her throat and then incorrectly administering a breathing tube, pumping air into her abdomen instead of her lungs.
In all, Charley went 56 minutes without enough oxygen to feed her brain, Mrs Hooper said.
She suffered a life-threatening haemorrhage following childbirth.
"They took everything. They took everything from us," she told 20/20 several years ago. "They took her smile. They even took her smile."
In her short 10 years, Charley has has a tough time.
The girl with big brown eyes and soft brown curls suffers from severe cerebral palsy, intractable epilepsy, scoliosis and microcephaly - a congenital condition in which her head is smaller than it should be - among other things.
Charley is blind, only able to see shapes and shadows. And because it is so difficult for her to eat, mealtime steals six to eight hours from each day.
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?
She has nearly died several times, Mrs Hooper said. When Charley was five, her mother had to resuscitate the girl on her own.
After that, the Hoopers decided to take advantage of every moment, creating an online bucket list to make sure Charley got to do the things most little girls would want to do. Some years later, the page is now filled with photos of Charley's adventures.
"She puts up with a lot," Mrs Hooper said. "By God, she's got a hard life.
"It's not fun to be Charley a lot of the time. It's not fun."
Not long after Charley was born, Mrs Hooper wanted answers.
She filed a complaint with the Health and Disability Commissioner, claiming that the midwives at a nearby birthing unit failed to care for her and Charley. The commissioner found that three midwives were at fault over the birth.
"The information provided in the file shows that ventilating [Baby A] became a challenge for the practitioners and adequate ventilation was not established in the first 23 minutes and probably not accomplished for a good hour following birth," according to the commissioner's report. "This would not have helped in correcting asphyxia and would have contributed to [Baby A's] outcome."
The commissioner recommended that the midwives review their practices and send the Hooper family an apology.
The birthing unit and the New Zealand College of Midwives did not respond to requests for comment.
According to the Ministry of Health, most expecting mothers are sent to midwives, practitioners who complete three years of education - a term Mrs Hooper said was not enough. She said a primary issue was that midwives did not have to be trained as nurses - and most were not.
"They duped me into thinking I would be safe," she said.
All women in New Zealand have the option to choose private obstetricians, but they must pay for services.
"Midwives are now the only choice available to most New Zealand women in the free [publicly funded] maternity service," said the nonprofit group Action to Improve Maternity.
Charley's day-to-day horrors led Mrs Hooper to dedicate her own life to fighting for women's maternity rights.
In 2009, she decided she wanted to help other women in similar situations so she joined Action to Improve Maternity as a founding member.
Over the years, she said, the organisation has helped more than 650 families find support and guidance, advising them on how to investigate botched births and explaining their legal rights to them.
"I've found time and time again that people have four questions when a disaster happens: What happened to us? How do we get an apology? What can we do? And how can we make sure it doesn't happen again?" Mrs Hooper said.
"I was no different than them.
"When you talk about what motivates me - Charley motivates me."
Mrs Hooper has had two more children: Zak, 8, and Cody, eight months. Both were delivered by midwives - but in hospitals, not birthing units.
"Everyone seems quite surprised that I didn't rush in for a caesarean section for Zak or this baby, but the hospital midwives are confident they will do their jobs well and so am I," she told the New Zealand Listener before Cody's birth.
"I'm about as knowledgeable as you can be without being a professional. I know what to look out for. I know to put myself in a safe place.
"I'm not asking for special care. I just need what I should have got in the first place with Charley."
Mrs Hooper said her hope now was that Charley, on some level, realises what her mother is trying to do for others.
"She has been given this incredible hard life," she said. "But hopefully she would appreciate that."
The Washington Post, AP