For husband and wife, Dr. Terry W. Hensle, director of pediatric urology at Children’s Hospital of New York, and Dr. Elizabeth A. Reiley, chief of pediatric urology at Hackensack University Medical Center.
What is ambiguous genitalia?
Hensle: Ambiguous genitalia is where you look at a baby and you can’t tell whether it is a boy or a girl.
How common is this condition?
Hensle: Probably more common than we think it is, because it is a very private issue and it is not going to be coded on a child’s chart and it’s not going to be talked about extensively.
How do you determine the sex?
Hensle: We try to maintain the gender of the gonads. A male gonad makes male hormone and ought to be gender-assigned male. A female gonad probably should be gender-assigned female. Sometimes when you try to make a judgment that is going to impact their long-term situation, we don’t make the right judgment. And we’re very careful these days, much more careful than we used to be, to maintain gonadal sex.
How do most parents handle this shocking news?
Hensle: The one thing the mom wants to hear after the baby is born is that the baby is alive. Everything else is secondary. You can tell them that their arm is on backwards, but as long as they are alive, that is okay.
How can doctors communicate with parents to minimize the impact on the child?
Reiley: Our first job with these kids is to make the family accept them. As you could imagine, if the obstetrician comes out and says, “Congratulations, it’s a boy,” and then an hour later the pediatrician comes by and says, “Well, maybe it’s not a boy,” and then an hour later, I come by and say, “We’re fairly convinced it’s a girl,” you are angry. You are confused. You just want information.
At what age do you see these kids?
Reiley: We see kids as babies with congenital adrenal hyperplasia. And then we see lovely young ladies who are teenagers, who come to the office with their parents because they have not gone through all the pubertal changes. They have not started having their menses. And they are found not to be young ladies, but to be young men.
Generally they are about fifteen to sixteen years old. Those are the difficult ones. The babies, in most cases, particularly those with congenital adrenal hyperplasia, will be normal. They are going to reproduce, they are going to get married and have normal intercourse.
But the older young ladies who are not young ladies will need other surgeries so that they can perform sexually.
Are most of these young people currently in therapy?
Reiley: More than the children, their parents need help. If you could imagine bringing your child in as a teenager…and finding out that it is not a young lady at all, that it’s a man—they feel guilty. And they want to do what is best for their kids, so they need help, whether it is therapy or clergy.
Steve Adubato is an Emmy Award–winning anchor for channel 13/WNET and host of One-on-One With Steve Adubato on the Comcast Network.
Article from September, 2005 Issue.