Looking for female with CAH that was raised as a male...

[Michelle]

I'm a mother of a 2 year old daughter with CAH. I met a family who has a newborn with CAH. They believed that they had a baby boy until the baby got sick and while in the hospital they were told that the baby has 46xx chromosomes, uterus and ovaries. They have not decided whether to raise their baby as a female or male. They are leaning toward having her uterus and ovaries removed immediately and having the baby placed on male hormones. Can someone please help with this situation. They want to speak with a genetically female with CAH who was raised male. Or to find some documentation to help them decide the right way to go. Thank you so much!

[Betsy]

Really bad idea. I'll expound more on why I think that way tomorrow as I am not in the right mindset to do it right now. Michelle, you mentioned that they were thinking of immediately doing it. Is there any way that you, as a sympathetic friend could get them to wait a bit and become better informed?

Where do you live? We may have doctors in our database in their area that they could call.

Betsy

[Michelle]

We live in the Sacramento area. Myself and another mom of a CAH girl are trying to inform these parents. Unfortunately they are young and have been lead to believe by the doctors that raising their daughter as a male is a suitable thing to do. They have not been fully informed of every aspect. They did not even know that they had a "daughter" until I explained how and why she has male genitalia. I appreciate any help I can get!

[Betsy]

Hi Michelle,

Do you know if your friend has been online to read any of the information that is out there?

Is there any way you could get them to see another doctor? In Oakland, there is a pretty good children's hospital that has one of the model treatment programs for intersex births. If I remember correctly for when I lived out in that area, Sacto is only a couple of hours from the Bay Area. If it's ok with you, I would like to send a link of this thread to some people that might be willing to talk to the parents.

Betsy

[Julia S]

Hi Michelle,

I live in California on the East side of Yosemite. We have an excellent ped endo that my daughter goes to. She is wonderful. I really can't express enough how great she is. She is in Reno. I'm not sure how far Reno is from Sacramento, about 2 hours? We drive 2 1/2 hours to see her and I don't want to move because we would have to give her up. She would definately explain CAH to this family in a way so that they understand what the consequences would be of raising this girl as a boy. Her name is Dr. Eckert at 1-775-784-7500. her address is 75 Pringle Way, St. 303
Reno, Nevada 89502
Fax: 775-327-5265

Please try to educate this family. I like Aimee's suggestion of reading on john Money. Try intersex society as they have a lot of info that could help this little girl.

If I can help in any way, let me know. Julia

[Aimee]

Dear Michelle:

I posted about the case of John/Joan on Mr. Carlton's message board. Haven't doctors learned anything about the mistakes of the past ? Besides John/Joan, there has been instances of people with "intersexed medical conditions that were pushed into a gender that wasn't what GOD intended them to be. Look at some of the stories that brave people have posted on this message board.


The outside appearance of what is between someones legs doesn't determine what gender they are. It's their brain that decides that.


Aimee

[Michelle]

Betsy,
They have been online to Intersex Society and said that did not like that website. I've been trying to get a hold of this family to tell them about bodies like ours. Unfortunately they aren't answering their phone nor do they have an answering machine.

Julia,
Thank you for giving me the information about your endo. I'll pass that information along. The scary thing for me is that my daughters endo is the same one that DIDN'T tell these parents they had a girl. So now I have to find another doctor for my daughter because I no longer trust this one.

I sure do appreciate your responses to my post. Please keep them coming. I'm going to try to get this family to get online and read these.

Thanks!

[Betsy]

Hi Michelle,

Wondering if there is an update to this?

(And praying it is isn't SRS Surgery on her)

Betsy

[Michelle]

Hi Betsy

Unfortunately I don't have any updates on this story. I've been unsuccessful with getting a hold of this mom by phone. I have e-mailed her but have gotten no replies. I'm not giving up quite yet because this family needs more support and information. I'm trying periodically to call and hopefully I'll get a answer one of these days. Thanks for your concern!

[Unregistered]

Don't do anything surgically!!!!
Let the child decide later in life!!!!!.
Cause if you make the wrong choice, you could ruin that child

[Michelle]

I wanted to update the board on the family I met this past August. After seeing specialists in San Francisco, the family has decided to raise they baby female. They haven't mentioned if they are going to have corrective surgery or not but I do know that they WILL NOT be performing a hysterectomy on this little baby and WILL NOT raise her as a boy! She is a genetic female with a uterus and ovaries. And is going to be raised that way.

Thank you to all who posted replies to my initial message!