A difficult decision for parents

Stuff reports:

A Waikato family has used hormones to deliberately stunt the growth of their disabled daughter and keep her child-sized forever.

At 10 years old, Charley Hooper cannot walk or talk, and will remain 1.3m tall, and 24kgs for the rest of her life.

Charley is severely disabled – she has very poor vision, her limbs are uncontrollable and her floppy head needs supporting, her brain is believed to function at the level of a newborn’s.

Parents Jenn and Mark Hooper feared as she grew bigger with age, they would no longer be able to take her places and needed a solution.

They stumbled upon the controversial treatment of giving her hormones to stunt her growth.

Denied ethical clearance to begin the treatment in New Zealand, the couple journeyed to South Korea where the hormones were administered.

They were then able to continue the treatment at home.

Jenn Hooper considers her daughter so severely disabled, she is “unabled” and reasoned that she would never be able to give consent to have sex, let alone get pregnant, so a hysterectomy was undertaken.

“We haven’t stopped her doing anything. Growing would have stopped her doing things,” Jenn said.

“We didn’t take away any choices that weren’t already taken from her.” 

Without the ability to speak, or give consent, they have always had to imagine what their daughter would want, Jenn said.

They try to judge Charley’s feelings, moods and physical needs through her moans. The volume and pitch, as well as whether her face is relaxed or contorted from intense muscle contractions is her way of expressing herself.

On hormone treatment, it took 4 years for Charley to stop growing. Within days after the treatment, Charleys seizures stopped, and her stiff uncontrollable limbs became more pliable. Doctors hypothesise that it could be from estrogen, which can change neurological activity and relax muscles.

There an be few things tougher in the world than being the parents of such a severely disabled child. I think one can have theoretical debates about what is best in such a situation, but the parents are the ones best suited to decide, if the child can not.

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