I recently found out about a condition babies are born with called AIS (Androgen Insensitivity Syndrome). In a nutshell baby girls are born with XY chromosomes also known as intersex. There are different forms but basically their body couldn’t respond to the testosterone to be a boy so they are born all girl but with a Y chromosome, which is primarily considered genetically male. Because their bodies cannot respond to the testosterone they are very feminine. They have no uterus so they are not able to carry a child. Conditions such as AIS are in a category called DSD (disorders of sexual development). There are over 40 different types of DSDs.
My daughter is intersex…
Our story begins 2 1/2 months after having our beautiful baby. We went to the pediatrician to finish up my daughter’s two month vaccinations. While there I asked the doctor to check out a lump my mom had found in her labia a couple weeks before. I had looked it up and found it could be a swollen lymph node, and swelling in the genitals is normal for newborns so I wasn’t too concerned. To our surprise our doctor mentioned a hernia as well as ambiguous genitalia and referred us to the Children’s Hospital. We were able to get in the next day. I cried and begged God all that night for it to be nothing. My heart hurt like never before but I truly believed we would show up the next day and they would tell us how silly our pediatrician was.
At Children’s the next morning we met with a DSD team made up of surgery, urology, genetics, and gynecology doctors. They began with a physical exam finding a second lump. After a lot of talking and next steps they sent us for an ultrasound. They couldn’t find a uterus. They sent us to get blood work, telling us they wouldn’t have a lot of answers for a couple weeks but they would have the chromosome testing in the next couple days. They called two days later to tell us she was XY . . . genetically male.
For 3 days I experienced panic attacks, I couldn’t eat, I lost six pounds and I was going through the stages of grief over and over again, one moment I was in complete denial, the next I was bargaining with God. I was troubled with what the future for my daughter will be. I kept asking myself “WHY? WHAT DID I DO WRONG? WHY THIS?” I felt a great sense of loss. I felt like I’d lost all the joy of being a new mom, like all my instincts and happiness towards her had been taken from me. I also felt a lot of guilt over my grief. She is still the same sweet baby.
My mind was racing; IS she a girl? Is SHE really a boy? Do I dress her the same? Can she live a “normal” happy life? Will we live with this hurt forever? Will she want to be a boy? Will she be treated badly? Will I ever accept this? Will a boy ever love her? Will we be okay?…
All I want is for my baby to be happy with her identity in the future. Since time has passed since first finding out I found myself going through waves of acceptance; some days harder than others. I have found myself preparing for the conversations of how she will not have a menstruation and how she will be a mommy but won’t be able to carry her own child. I realize the more I accept these things the less big of a thing it will be for her because she will know no difference.
I have come so far since that day of first finding out but my hurt and fears no longer lie within me and my acceptance but that of others. As I’ve researched I have found this isn’t as uncommon as we think. I have also found out many people want to keep it private… why? Because there are people in our world who cannot understand, who would judge and might call my daughter names. The tears I cry are for the hurt she will experience because of ignorance.
I believe there is a difference between privacy and secrecy and I am sharing this today because I truly believe if more people knew we could squash the stigma that comes with being intersex and make people aware. Parents are amazing and I don’t know anyone who has heard our story that wouldn’t rally around and lift us up and support our daughter as though nothing is different about her. I am hoping my story brings that awareness. People with DSD need no longer to live in secret.
