Julia’s Story

JULIA’S STORY

A Mother’s Story- The story of one girl born with atypical genitalia and her family

When my daughter was born I didn’t even ask if she was a boy or girl because we had had an ultrasound that said she was a girl.  So I just assumed she was a girl and didn’t ask the DR.  My Dad came in with a cell phone and we called my sister in and said her newest niece was born!  The nurse said that the pediatrician wanted to examine our baby outside the room.  That struck me as odd because in the birthing class they said the baby would never leave the room unless there was something wrong, but I didn’t think there was anything wrong.  I asked my husband to go with our baby to be examined. They were gone a LONG time.  My husband came back early and I kept wondering where my baby was.

The nurse brought her back.  Then she showed me how to have my baby latch on.  About 5 minutes later about 6 doctors and nurses walked in.  One woman had a box of Kleenex in her hand. (I get rapid heart rate and breathing as I recall this.)  The pediatrician introduced himself and began by saying “There’s something wrong.”  I thought we needed to move out of the birthing room for the lady in labor next door.  As he began to explain that he wasn’t sure if she was a boy or girl and that it was most likely causes by CAH and the salt wasting aspect, hormone missing, extra male hormones etc… Neither my husband nor I heard any of it!  I got extremely hot and clammy and heard a loud ringing/buzzing/waaaaaaa sound in my ears.

The pediatrician asked if we wanted to see what he was talking about so we unlatched her and unbundled her blankets to take a look.  I remember thinking she looked like a girl with a little bud at the top of her labia and no opening.  All the while the nurse was shoving Kleenex in my face and I wasn’t even crying.  That made me so angry.  I remember asking my husband once they left. “What was he saying about salt?”

I had no idea that hormones could cause ambiguous genitalia.  We cried and I said what a hard life she would have as I didn’t know she was a she and has a vagina, ovaries, and uterus!

That evening my dad, step mom and our friends (a couple) happened to show up at the same time.  They were oohing and ahhhing.  I couldn’t take not telling them when they said how perfect she was and how she looked so much like a girl.  I said “There’s something wrong with her.”  I couldn’t say that the doctors didn’t know if she was a boy or girl.  I couldn’t really face that and I just KNEW she was a girl.  I have had several strong feelings in my past and trusted that.

When I was pregnant with her I KNEW she was a girl, who liked to do outdoorsy things: a Tomboy like me!  That made me happy.  I also KNEW something wasn’t quite right although I never voiced it out loud as that would double jinx us!  But one day I saw an elderly couple with their full grown mentally handicapped child and I definitely knew that wasn’t the problem.

Anyway, I told them that she didn’t have a vagina and that we had to drive 400 miles the next day to Children’s to have tests run.  They were flabbergasted and didn’t have much to say and didn’t stay long.  I don’t live near the rest of my family so they didn’t stop by.  One of my sisters called and I let her know the half truth of her not having a vaginal opening.  I asked her to call my sister and have her call me as I couldn’t call long distance.  My other sister called right away.  She is a nurse and we are very close.  I told her the whole truth and told her we were coming down the next day.  She made me feel much better.

Most of the staff made me feel uncomfortable and seemed to pity us.  One nurse was AWESOME!  I get tears in my eyes thinking of her!  She was so genuine and comfortable and said, “There is just something sooo special about your baby!”  I wish I had let her know how much I needed to hear that, but she’s moved.  My husband called his dad who was at his sister’s to let them know of her birth.  My husband was very straight forward and said “Things are a little ambiguous and we need to go to San Diego to get her checked out.”  The drive took 10 hours and was exhausting.  The whole time we had NO CLUE that hormones could cause this; as I said we didn’t hear what the pediatrician said.  I was wondering why the hurry to go straight to the hospital.  Couldn’t we stay the night at my sister’s and go in the morning? No!

We had to go straight there.  So we checked in at 11:00 PM and the blood was drawn and the diapers were weighed.  The residents, urologists, geneticist, endocrinologist etc. came in and out.  I remember the endocrinologist saying something like “Well we hope your baby is a girl as we cannot make what she’s got into a penis.”  That was my fear that she would be genetically one way and raised another.  I just didn’t think you could fool Mother Nature.  And this was before all my research and learning of John Money’s experiments, etc.

Results from the ultrasound came in first, a vagina, uterus and ovaries! Yahoooooo! It took three days for the genetic results showing that she was a girl with CAH.  Then the endocrinologist  sat us down and sketched out the pathways and blockages that cause too much male hormones and therefore ambiguous genitalia.  We were ecstatic that what she had could be controlled and (I’m embarrassed to say) that it was heard of and known and had a name.  I didn’t feel so alone.  You mean I can look this up?  The phone network always starts with my sister who relays to everyone else (big family).  So as news came in we let everyone know the good news.  My sister meanwhile began asking her doctor friends what we should be doing, who we should be seeing and what the outlook for this was.  Well, it seems we were seeing all the right people and that outlook was positive and that surgery could correct her genitals and she has a chance to conceive as much as anyone else, in theory.

We were recommended to a urologist who was the “best”.  He said everything we wanted to hear.  Fixable, low pain afterwards, not have to stay overnight.  Then he sort of slipped in that there could be reduced sensation.

Whoa.  This is just mentioned in passing?!? No big deal? But we still left intending to have the surgery done in a couple of months.  Sooner the better, right?

Then I started researching.  The urologist had mentioned intersex activist and that they were a little off and don’t listen to them.  So of course I went right to them.  I gathered many more questions and faxed the urologist my list.  He called me back right away with most of the answers.  But he couldn’t tell me about the exact procedure as he said everyone is different and he won’t know until he gets in there and that it’s hard to explain over  the phone as it’s three-dimensional.  Ugh.  I didn’t like that.  He also compared this HUGE decision with someone else’s body to not buying her a new car when she’s 16.  No biggie just one of those decisions you have to make for your child.  He made me cry for questioning the surgery.

I made an appointment for the surgery.  Then I cried every day at any time of day.  How could I do this to her?  What if she couldn’t feel anything as an adult?  How would I feel about that being done to me?  How could I cut her clitoris off?  I canceled the appointment, claiming to myself I needed more time.  I knew I couldn’t go through with it.  No way.

As my daughter got on medication her clitoris shrank in diameter and settled in between her labia.  When she’s standing you can barely see it.  She will have surgery to open the labia for menstruation just before puberty.  As for now, she has no need for a vagina. She can make her own decision about her clitoris.  We will support whatever decision she makes when she  is old enough to fully comprehend the possible consequences.  It is her body after all, not mine.

She is only 20 months so I cannot say how she’s coped with her body but she definitely has feeling!! Ha ha!  We firmly believe she knew the strengths and weakness of her body and chose it for some learning and growth to be had (as we all do).  And that helps comfort me.  She is an amazing child, bright, happy, silly and well co-ordinated.  We are filled with so much love her!

Julia

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