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Disabled girl's parents defend growth-stunting treatment

By March 12, 2008 - 10:06am
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Found this story on CNN this morning ...

NEW YORK (CNN) -- It's been a year since the parents of a severely disabled child made public their decision to submit their daughter to a hysterectomy, breast surgery and drugs to keep the girl forever small. Today, the couple tell CNN, they believe they made the right decision -- one that could have a profound impact on the care of disabled children worldwide.


Do you agree with the parents' action? Do you think they are helping her? Do you think they are liberating caregivers?

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I remember discussing this on a parenting forum last year when the surgery was first conducted.

Sometimes I think the expression "walk a mile in my shoes" is a convienient way to not have to answer for our actions. But in this case - I can't imagine having to care for my child on this kind of 24/7 basis for life.

We all have human rights and the right to dignity and rights over our bodies. These parents made decisions for this girl about her body and future without her consent but she wasn't able to consent and as her primary (and lifelong) caregivers, they have to make certain decisions that parents of healthy children will never have to make.

They have no regrets which is good. But this decision cannot have been easy.

Their detractors have said that they had no right to make decisions for a child that can affect her whole life but don't we as parents do this all the time? From the moment of a child's conception, we make decisions for our kids that will affect them for life. Will I drink or smoke in pregnancy? Will I take my prenatal vitamins? Epidural or natural? Vaginal birth or c-section? Breast or bottle? How about vaccinations? Homeschooling? Regular school and if so - public or private? Meat eaters or vegetarian? Religion? What kind of neighborhood will we live in? Will I give my kid a sibling? Will I give her birth control when she is 16? It goes on and on...

I do have some ethical issues only because modern technology can change someone's health circumstances within a few years. So the changes they have made now are irreversible regardless of technology or 'cures' down the road. A scary and definite possibility.

But I believe these parents did act within the best interests of this child as they see it. I don't know the child and don't know their daily lives but I do know it is non-stop care and parents need as much help and support as possible.

I do hope they made the right decision because it was a huge one. But I don't believe they are 'playing God' anymore than a woman who uses fertility treatments or a man who has his hips replaced.

March 12, 2008 - 2:17pm
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