Monday, June 29, 2009

The Artificial Woman-pt. 6--The real girl becomes an artificial woman

The fact that Rainbow was different from other girls was not lost on her family doctor--a country doctor with a hunch.

By the time Rainbow had turned 13, she still had not even started puberty--no growth spurt, no menstrual cycle, no breasts, no anything that would be of any interest to a boy going through puberty. These facts combined with Rainbow's puffiness, bad eyesight, constellation of moles over her body, and overall physical anomalies gave her doctor pause.

Without explaining why, he ran a blood test during a routine checkup. Rainbow's fear of all things with needles had not subsided, still she submitted to the mystery blood test.

When the results of the Mystery Test were in, the doctor called Rainbow's parents and asked them to come in for a chat, sans their daughter.

Not liking the unknown, Rainbow fussed and tried to determine what was so wrong with her that her doctor had to have a private conversation with her parents. When her parents came home they told her: A blood test called a karaotype revealed a rare genetic disorder called Turner Syndrome, and as a result, among other things, Rainbow would not be able to bear children, and would need to take pills (hormones) to gain "secondary sexual characteristics".

"But mom and dad," she said, "I like guys."

Rainbow's mom, a nurse, broke it down for her. "Secondary sexual characteristics are what make you a woman on the outside," she explained.

As to the what and why of the condition, Rainbow studied a booklet given to her parents called, Good Things Come in Small Packages. On the cover, was a sketch of a girl who had a very similar shape to Rainbow--short, soft shoulders, puffy hands and feet with arms sticking out. The book said that about 1/2000 girls have TS. In general, girls with TS have 45 chromosomes instead of the standard 46. Being only 13, not all of it sank in. Thankfully, the book had a question and answer section:
  • Are girls with TS retarded? Answer: no more than anyone else (whatever that means);
  • Are girls with TS promiscuous? Answer: no (presumably this question was asked because nothing says, "pork away pal!" like a girl who can't get pregnant);
And the book went on about some of the potential health problems associated with Turner Syndrome, including heart and kidney defects. There were two options available to Rainbow and her parents for treating TS and helping her get her boobs, period and maybe even height. The boobs and period could be covered by taking a mix of estrogen and progesterone for most of the month, at the end of which, a period (monthly visitor/horror, Aunt Flow) would appear, and Rainbow could experience the joys of being "on the rag".

It turns out these hormones would add some inches, but not many to her height. In order for Rainbow to grow to a "normal" height, the doctors offered up the idea of taking male hormones (androgens).

All of this confused Rainbow, so her parents took the lead and decided "yes" to the period and boob hormones, and "no" to the male hormones, as they could endow Rainbow with male secondary characteristics, such as a deep voice and facial hair, that wouldn't go away.

And all of this was shocking, but the part of the TS news that bothered Rainbow the most was the fact she would never bear children. She thought that's what all girls grow up to be--mothers--all girls except for her.

up next: ultrasound and a visit to the "crotch browser".


Yukon said...

I so remember all this. I was so confused and worried and, in typical fashion for me, wanted to "fix" it. Ah well.... Regardless of your whacky chromosomes, you are still a WONDERFUL WOMAN (not to be confused with WONDER WOMAN, whom I've never met except through Sat. morn. cartoons!)! Don't forget it. And things turned out OK. You are a Mom to a great kid!

Polly said...

My TS daughter is 20yo, a college student and working toward being a pro snowboarder. She is the most extraordinary woman I have ever known.

She makes so many references to "hoping I can get pregnant" that it stirs my heart. She says she's plans to adopt too, but...

This girl is so cool, she's so great with kids and puppies. She's pretty high maintenance but still manages to have boyfriends.

Then there's my genetically perfect 22yo son... We tease alot that we hope he ends up living under a nice bridge. He has no drive. My daughter got it all.

Polly said...

BTW, Kyla was diagnosed prenatally.
I was never close with my mother but our relationship is amazing.
When she moves away from home my husband will have a choice: put me in therapy or get me puppies and/or a pony.

Eden Jones said...

Thanks for reading the post. I wish your daughter well Polly.