Adopting a DSD child? NEW October 2011

We are working on bringing together information for parents who are thinking of adopting a child with a DSD. In mean time, we are grateful to Sarah for writing this article about adopting her 14 year old son who has a DSD.

Intersex Kids China

Did the shocking title grab your attention? It’s actually the name of a yahoo group to which I belong. Yes, we adopted an intersex child from China, although I will admit that it wasn’t our original intention. In fact, our almost 14 year old son’s file listed his special need as hypospadia, which is when there is a urinary opening (or two) that is not in the traditional place. We read somewhere that 1 in 300 males have a form of hypospadia, so we weren’t at all concerned about his special need. However, six months of post-adoption testing revealed that our son also has Partial Androgen Insensitivity (PAIS), a type of Difference in Sex Development (DSD). Yes, our teenaged son is amazingly healthy, a super athlete, all-boy, and an intersex person. Try not to be scared of the term intersex. It is not my preferred lingo, but many people who have differences in sex development embrace the term. No, our child is not gender confused. He’s not a transvestite, gay, ambisexual (*), or feminine in any way. He has a strong sense of identity, and he’ll kick your butt if you suggest otherwise. However, he does have a difference in sex development, along with ‘ambiguous genitalia’, as do 1 in 2000 other people!!

While no on-going treatment is needed, and our son is perfectly amazing in every way, we did have to address a few specific medical concerns. First, we had to reveal to our now sixteen-year-old son that he is infertile. Since we routinely encourage all six of our children (and everyone we meet!) to consider adopting a child, the knowledge that he cannot father biological children hasn’t seemed to bother him yet. We also needed to discuss with him the various options for surgical procedures to correct the hypospadia, and perhaps have other a few other cosmetic surgeries if he chooses. We kept it simple: “If you want to look more like other boys, or if you want to be able to stand up to pee, there are operations available.” He was shaking his head no before we finished the sentence. Our son was hospitalized in China for three months (at age eleven), having who knows what kind of surgeries. While he can’t tell us specifically what the surgeries accomplished, he clearly remembers having to relearn how to walk because he was weak from being bed-ridden for months. Consequently, surgery isn’t an attractive option to him at the moment, and we support his decision.

The secrecy (and therefore implied shame) of the diagnosis is the hardest to endure. Why do I have to insist to the swim teacher that Yes, my son CAN wear a shirt in the indoor pool (he has breasts) if he wants (**). NO, coach, you are NOT entitled to know if my son has ever been treated for a medical condition, or ever had any surgeries. In fact, I just white out the handwritten line the doctor includes on our son’s physical form each year and then make copies. Our son’s medical condition does not, and will not, affect his participation in sports, and, you, school nurse, simply have no right to receive full disclosure.

Armed with more knowledge now, we are currently adopting another boy listed with ‘ambiguous genitalia’. This time we knew the right questions to ask: Has the child always been raised male? Or was his gender switched after chromosome tests? Did he have surgery? And, if so, are the medical records available? While we have chromosome results, lab reports, and photos, we have chosen NOT to consult with our pediatric endocrinologist about our new son prior to his adoption, simply because we don’t want our little guy to be subjected to more invasive tests. We’ll love him with all our hearts, even if we find out later that he is, in fact, a she.

(*) ambisexual: this is one of the words used in the Chinese medical records to ‘label’ this special need (alongside with another view reflecting how very badly DSD is understood).

(**) Note from dsdfamilies.org: we will be exploring how we can support growing boys and their families better by including more dedicated medical and psychological information; advice and suggestions always welcome. In mean time we asked the mum who wrote the article to explain the breast development: ‘The breast development is because he has extremely high doses of testosterone (without medical intervention), but his body converts it to estrogen and not DHT (DHT stands for dihydrotestosterone. DHT is much, much "stronger" than testosterone). One of the cosmetic surgeries we think he might consider in the future is a mammoplasty.’