KANSAS CITY, Mo - A three-year-old Blue Springs girl is one of what could be thousands of babies in our area born with traits of both sexes.
Doctors estimate more than one percent of live births show some degree of sexual ambiguity.
Many patients may never have been told of the condition by their doctor.
“In the old days, it was customary to not disclose to the patient that she had a Y chromosome and to (not) discuss these things with the patient,” says Dr. Jill Jacobson.
Jacobson runs a clinic for Disorders of Sex Development, DSD, at Children’s Mercy Hospital in Kansas City, Mo.
Jacobson says new studies debunk old-school thinking that the news would be more psychologically damaging than helpful.
A Local Mother's Story
“The doctor didn't say, 'Oh it's a boy' or 'Oh it's a girl, congratulations',” the toddler’s mom recalls. “All I heard was, 'Congratulations'. And it got very quiet.”
Visually, her newborn had what looked like both male and female organs.
“I took her diaper off,” the mother says. “It did look like a small micro penis.”
For parents like this mother, waiting for the answer to their child's sexual identity can be agonizing.
“I wasn't sure if it was a boy or a girl,” the mother says recalling her baby’s first day. “You know, what am I going to say? How do I call my friends and family who are waiting for calls? It's a girl? It's a boy? What am I going to say?”
Twenty-four hours after birth, they had their answer. It's a girl.
While all girl inside, an adrenal gland disorder called Congenital Adrenal Hyperplasia created the confusion outside.
A nine-hour surgery waited ahead.
“They reconstructed it, I would say, to make it look more female,” the mother says.
What is DSD?
DSD is getting new attention since the high profile case of a South African runner who reportedly has both male and female physical characteristics.
Runner Caster Semenya's muscular physique and running style prompted a controversial sex test.
The results, reported by Australian media, haven’t been confirmed, but leave questions as to whether she'll be able to compete in women's sports.
At Children's Mercy, Dr. Jill Jacobson's clinic for Disorders of Sex Development sees around ten new cases like this a year. Each a different puzzle.
“One is the genetic sex, whether you're XX or XY,” Jacobson says.
Besides DNA, doctors examine hormone levels, and internal organs.
“Then another question is the external genitalia,” Jacobson says. “I try to plot out all those factors on a continuum and try to determine whether the child fits more in the masculine frame of reference or feminine.”
Adjustment Can Be Challenging
Some struggle with their sexual identity.
“One child went to her parents and asked them if she died and went to heaven would she come back in the right body,” Jacobson says.
Jacobson says in some cases, babies have fully formed organs of both sexes, while in others just a few confusing traits.
Jacobson follows cases closely, looking for children who grow up feeling their bodies don't match their souls.
When making babies appear more female by surgery, she urges caution.
“We have to be cautious about not removing too much tissue in case the child feels like a boy and wants a female-to-male sex change operation later in life,” says Jacobson.
Doctors say even successful cases can leave children displaying some behaviors stereotypical of the other sex.
The Blue Springs child appears to be adjusting well.
“She's always positive,” the mother says. “Always likes to go up and hug strangers.”
She says doctors tell her many girls with the condition grow up with more aggressive personalities.
“She's more of a tomboy with her (foam rubber) gun and her racecar,” the mother says, laughing.
Although she will need medication to balance her hormones for the rest of her life, the little Blue Springs girl will one day be able to give birth to a baby of her own.
