Wednesday, January 03, 2007

Frozen in time?

Drudge posts a link to a story in the Guardian (UK) about a nine-year-old US girl whose parents have chosen to take measures to keep her from physically growing any further.

Before you get all up-in-arms about such a thing happening in America, consider this: the little girl was born with permanent brain damage that prevents her from ever progressing mentally past infancy.

Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life. In discussions with doctors at Seattle Children's hospital they devised the treatment: removal of Ashley's uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.

The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.

I read this, and I understand it on a deeply personal level. This little girl whose brain is permanently damaged began experiencing precocious puberty at age, what, four? five?... and so did my little girl, who also has permanent brain damage.

We took her to a pediatric endocrinologist, who prescribed a monthly injection of Lupron Depot®. Lupron brings all the body's hormonal activity to a screeching halt. It's often given to men with prostate cancer or women who, for whatever reason, need to have menopause brought on all at once (pre-hysterectomy, perhaps), and it's given to children who have precocious puberty.

The reasoning went as follows: once a girl begins her menstrual cycle, her height becomes locked-in (within an inch or so). If a six-year-old girl menstruates, she never gets the chance to have all that slow, steady growth that comes during normal childhood -- no, she gets the initial growth spurt which makes her the tallest child in kindergarten, and then she gets her period and never grows again, making her a dwarf in adulthood.

Our daughter's brain damage is the cause of her precocious puberty, and it's apparently not uncommon in childhood brain-injury patients. Many forms of brain-injury affect the pituitary gland, which is at the base of the brain. The pituitary gland is what regulates growth. In brain injury, the pituitary's time-bomb for growth is often detonated way too soon, hence the onset of puberty.

Today my daughter had a regular checkup with Dr. Grace Tannin, pediatric endocrinologist at Children's in Dallas. Rick took her to the appointment, since I had a teacher workday and needed to be at school. At lunch when they returned home, I asked him how the appointment went.

"No growth," he replied.

This isn't good news, but it's not unexpected. You see, by stopping the hormonal activity, we were hoping to "buy" as many slow-growth childhood years for her that we possibly could before discontinuing the Lupron and bringing on menses. At best, however, they predicted she'd only be about 4'6", and she's pretty close to that now. They don't think she'll gain any more height inches. She weighs about sixty pounds and just turned eleven.

The other factor which comes into play is that our daughter is also mentally and physically disabled. She functions on a first-grade level and learns very, very slowly. She is a "left-hemi" cerebral palsy sufferer, which means that the entire left side of her body is very weak. She walks (with some gait affect) and talks and reads and writes, but she will likely always be very childlike and fragile. I expect that she will live with us permanently.

And I'd be lying to you if I said I didn't think about her future.

She's very trusting and sweet, and she loves everyone. She's incredibly, extremely vulnerable to predation, and would be completely incapable of defending herself. I can't imagine what pregnancy would do to her tiny body, were the unthinkable to happen.

The quandary we're in is extremely difficult. Are we "eugenicists," as little Ashley's parents have been accused of being? Am I lazy and selfish for not wanting to have to explain menstruation and sex to my very innocent and trusting little girl, much less try to help her keep herself clean? It's not something I look forward to, that's certain, but it's not about me. It's about her, and what's best for her. Would a doctor even entertain the notion of permanently sterilizing her? And do I have the right to make that sort of decision for her?

This kind of thing keeps me awake some nights, and it's not getting easier.

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