“Oh, my God, Deb!” On the verge of tears, my young husband is beside himself, “I don’t know how we’re going to afford all the care, the special schools!”
Special schools? Our baby is just hours old! I’m back in intensive care, hooked up to a myriad of IVs, being monitored. Steve’s been in the Neonatal Intensive Care Unit watching over our newborn. Reaching over the bed rail, I take his hand. “What is it?”
Barely taking a breath, he cries, “They said our baby will be deaf, blind, and mentally handicapped!”
“What? Who told you this? The intern?” I don’t even let him answer. “Does the baby have a rash, like this?” I show him my palm covered in a rash that looks like a blueberry muffin.*
He takes my hand. “Oh, no! You have rubella, too!” “That’s impossible! I’m immune so the baby is immune!” This is ridiculous. I need to speak to the chief neonatal resident. “Look, this is a reaction to the antibiotics they gave me. I’m allergic to penicillin. You’re allergic to penicillin. Our baby must be, too.”
My amniotic sac broke days before they finally let me deliver. That gave them time to give me steroids to try to get the baby’s premature lungs to develop. It worked; our baby can breathe on its own.
“There’s something else, Deb.” Steve leans heavily on the bed rail, exhausted, afraid, looking to me for hope. “They’re not sure if our baby is a boy or a girl.”
Steve and I meet with the pediatric endocrinologist. Our mothers come with us for moral support. The most renowned pediatric endocrinologist on the West Coast explains that our baby is an XY female, which means the chromosomes are male, but the genitalia appears female. Because it has androgen insensitivity, she recommends we raise it female.
The doctor says, and I quote: “It’s easier to make a hole than a pole.” I’m upset. This doesn’t feel right. “But what about our baby’s brain? If we raise him as a female and ‘she’ feels male, let’s say by adolescence, then won’t ‘she’ be psychologically confused and possibly damaged by adulthood?” “We don’t know. We only monitor them through childhood. We believe gender identity should match the genitalia and secondary sex characteristics.”
I’m just a neophyte nurse sitting in front of a renowned medical specialist, but her logic seems ludicrous. Before I can argue the case of transgender individuals being surgically altered to suit how they feel about their gender identity right here at UCLA, my mother asks, “What’s secondary sex characteristics?” Like a good nurse, I explain the doctor’s medical jargon. “She means that if we raise our baby as a boy, he won’t have body or facial hair.”
Sitting up as tall as her four-foot ten-inch frame allows, Mom barks, “That’s ridiculous. The child is half Greek and half Italian. The women in our family have mustaches!” Mom’s protective energy reminds me of a small dog fending off a bear, “That’s no reason to cut off anything!”
So with the support of Mom, I follow my intuition against medical advice and go with our child’s DNA, knowing that he may decide later what gender best suited him (or her, or they…)
Our baby was born intersex. Well, at least that’s the terminology used today. One in two thousand children are born with ambiguous genitalia. No one knows why. I know why I gave birth to an intersex child. Jarys is why I do what I do.
You see, I had to become a hormone specialist in order to save my child. And like Dorothy in the Wizard of Oz, I make the best of things. The tornado of birthing an intersex child and then navigating the medical system was a gift. Now it’s time to find the Yellow Brick Road.
Excerpt from Hormones in Harmony
*Editor’s note: literally a blue rash