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Chicagoans is a first-person account from off the beaten track, as told to Anne Ford. This week’s Chicagoan is Elizabeth Yerkes, pediatric urologist.
“I’m part of a team of specialists that works on disorders of sex development. ‘DSD’ is a relatively new label that covers a lot of different diagnoses. It refers to the condition of having something about one’s genetic material or internal or external genitalia that is not typically male or female. Some affected individuals prefer the term ‘intersex’ because they don’t want to be considered as having a disorder.
“One diagnosis is mixed gonadal dysgenesis, in which a chromosomal anomaly affects the development of the gonads. That can present as something that looks like either an enlarged clitoris or a penis with severe hypospadias, in which the urethra doesn’t develop, so the scrotum may be split and look like labia.
“Our team consists of me and two other urologists, a pediatric surgeon, a pediatric endocrinologist, a pediatric psychologist, and a genetic counselor. When we see a baby with ambiguous genitalia, we try to help the parents understand what we think the baby’s gender identity will be in the future so we can assist them in choosing an initial sex of rearing.
“The thing is, you can decide which bathroom the baby uses at school and what clothes you dress them in, but their gender identity is innate, and until they grow up, you don’t know what it is. Gender identity is the feeling that you are a man or a woman—though not everyone has to identify as one of those—and how you identify yourself may not match what’s present on the inside or the outside. We do believe that the amount of testosterone made in the body prenatally and in the early newborn period may have an impact on a baby’s future gender identity.
“Very extensive counseling has to occur for the families to elect anything surgical. We establish with the family an ongoing dialogue about how to help the baby understand, when they’re a teenager, the decisions that were made on their behalf. And we recommend long-term psychological follow-up.
“One thing that’s tricky is that with certain conditions, we know that babies heal better and remember less when they have surgery when they’re young. When they’re older and can consent, we believe their surgical experience will be a lot different. No one really knows the implications of that. So making a case that everyone should wait and have a procedure at an age where they can choose to do so may be a really good idea, but it may also turn out to result in a different sort of suffering. If a baby is born with his urethra in the middle of his scrotum, when he becomes a teen will he say, ‘Why didn’t you fix this when I was a kid?’ or will he say, ‘Thank you for not fixing this’?
“There’s a lot we don’t know, and we’re very open in telling families that we don’t know. If you come into this with the mind-set that you know everything and you can tell the family exactly what’s right for their child, that’s just not true. The good news is that, while in this country you have to assign a sex in order to get a birth certificate, you don’t have to take it farther than that. We would never tell a family that they have to give their baby a certain hormone or have their baby operated on. As long as there’s no medically dangerous situation, you can just let your child be.”