28 Oct 2015

Family stunts disabled daughter's growth

10:33 am on 28 October 2015

A New Zealand family is making worldwide headlines after their decision to stunt the growth of their severely disabled daughter.

Mark and Jenn Hooper's little girl, Charley, is 10 years old - and just 1.3m tall. She will remain this height for the rest of her life after her parents decided to give her a hormone treatment known as growth attenuation.

Charley has less control over her body than a newborn, with no head control and no purposeful movement of any limbs. She is blind and does not recognise anyone, including her parents.

She can communicate pain, hunger or discomfort, but Mrs Hooper said it was up to them to figure out what her signals meant.

Problems with her birth meant she was deprived of oxygen for almost an hour, leaving her brain irreversibly damaged. She had as many as 200 seizures a day for years.

The Hoopers began the hormone treatment in 2009 and have now finished it. The therapy triggered an early puberty, preventing her from reaching her full height and weight (Charley is currently 24kg) and increasing her bone density.

Her treatment also involved removing her uterus - sparing her the discomfort of menstruation - and her breast buds.

"We stayed very quiet until it had finished. We knew it would be seen as controversial, so we just wanted to make sure that there was nothing standing in the way of getting her going," Mrs Hooper told Radio New Zealand.

She said she knew of more than 70 families across the United States and Europe who were pursuing the treatment for both boys and girls.

Charley had gone from having 200 seizures a day to having none at all, and - for the first time in her life - had been able to smile.

But these were not the reasons that drove the family to seek the treatment, which had to be done in South Korea after a New Zealand ethics committee was unable to provide a unanimous yes.

"We knew that as soon as Charley was too big to lift without a hoist, she was housebound. The world is not set up for this top 0.1 percent of severe, severe disability.

"Ramps and whatever, that's all one thing, but being able to change her nappy - it becomes impossible [if she were big enough to require a hoist]," she said.

"How can she experience life stuck in her room, lying on her bed, staring up at a ceiling she can't even see?"

Mrs Hooper said she did not understand why the treatment was so controversial, as all they had done was make Charley smaller.

"We have absolutely no regrets.

"And as for the disability rights groups that say that Charley has a right to bodily autonomy - they didn't worry about any of the other surgeries. Charley can't make a decision."

Parents were not expected to explain the risks of such things as tonsil removal, and were trusted to act in the best interests of their child. Mrs Hooper said this was no different.

Critics had argued the surgery could trigger a "slippery slope" in terms of disability treatment, but Mrs Hooper said that was an unfair burden to be placed on one family.

"We're not responsible for all of that - that's too much for one family. We're responsible for our little girl, for deciding what we can do best for her, in our family.

"It's far too much - nobody else has to consider the slippery slope of the entire disability population in the world when they make a decision on their child.

"It shouldn't ever be made easy to obtain that treatment, but it shouldn't be made as hard as it was for us."