our incredible boy

January 29, 2010 ambiguous genitalia, anorchism, intersex, Urogenital System 0 Comments

by a mother of a boy adopted from China with a SN of ambiguous genitalia

I first fell in love with his photo. I saw it on a Waiting Child listing. When I read the paragraph of background information and saw the words “ambiguous genitalia,” I didn’t really know much about the condition. At the time, we weren’t planning on adopting, so I just casually read a little more on the topic. Two months later, we requested his file.

It contained very little information. We knew he was healthy. We could see from photos and read from the description that his genitalia was different from that of other boys. We started thinking about adoption.

I contacted several doctors, including a pediatric urologist and a pediatric endocrinologist. The endocrinologist filled in a lot of gaps, explaining several possible diagnoses that would have led to his condition. Both doctors told us that they would do further testing after our son arrived home. After we accepted his referral we received the results of a chromosome test that a previous prospective family had ordered. The test revealed XY chromosomes that matched the gender in which he was being raised. But our endocrinologist explained that a lot more goes into gender than chromosomes or organs. She explained how a person’s brain “feels” male or female based on in-utero exposure to hormones. We learned that we could not rely on his chromosome test or his internal/external organs to completely determine gender. Our doctors told us that they would work with us to make the best possible decision on his gender after he arrived home. (Based on what we learned, I now believe that pre-adoption testing for children with disorders of sexual development (DSD) is rather pointless. Sending countries do not have the resources to adequately test children and invasive procedures subject children to unnecessary trauma. Our son was definitely traumatized by endless blood draws—requested by earlier prospective families—that really told us nothing of consequence.)

During our wait, I worried a bit. What if we got “him” home only to be told that he should really be a “her?” What would we tell people? How would people treat him?

Worry was a waste of time. The moment we met him, we knew he was “all boy.” Further testing revealed that he was born without testicles; they’d “vanished” in-utero, giving him the brain of a boy. His small phallus will grow with hormone supplements and he should lead a relatively normal adult life. Best of all? He is an extremely happy, healthy child who loves life and his family.

I’m aware that many consider this a “mental health” condition, assuming that children with DSDs will grow up to be unhappy adults. Previous generations of adults with DSDs were raised in an era where children were often surgically altered at very young ages to force them to look like one gender or another. As professionals and parents understand the importance of waiting to make irreversible surgical decisions, the future looks different for those with DSDs. Professionals estimate that 1 in 1000-2000 births are affected by some type of DSD. It’s common.

The number of waiting children with “ambiguous genitalia” is astounding. They are healthy children who just happen to have a difference in one part of their body. I can’t imagine life without our beautiful son. If we adopt again, we will adopt a child with a DSD.

Support groups for families of children with DSDs:

Yahoo Group for Intersex Kids from China

Yahoo Group for AIS/DSD Parents

Consider reading:

Fixing Sex: Intersex, Medical Authority, and Lived Experience by Katrina Karkazis

DSD Guidelines, a project of the Consortium on Disorders of Sex Development.

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