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[proudmama]

Hi everyone!
My name is Ashley. I just found this site yesterday while doing more research. I am not intersexed. I have recently been exposed to this "world" and although I do not have a DSD myself, I had a child 9 months ago who does. We have fought with the doctors and the hospital to get treated and to be respected.

My baby, Skyler, was born 4/20/09. Presented with ambiguous genitalia. We spent the first couple months of her life in and out of a hospital 3 hours away from our home trying to get a diagnosis. We got a few piece of information at a time. My baby is 46 XY. We raised her as a male named Connor for the first 6 months of her life. We went in for surgery to repair the baby's hypospadias and to descend testicles ~ this is what the urologist was 99% sure was going to take place. In my heart, I knew we were dealing with something completely different, and I told the Dr. that if he found anything other than what he had mentioned to stop the surgery immediately. He pretty much scoffed at me and told me that he was "99% sure." Anyway, to make a long story short, the cocky urologist found a uterus and fallopian tubes, came out (tail between his legs) admitted he was wrong and did a biopsy of the gonads. We waited for those results for a long time. 3 months later, we have still not been able to get a follow-up with the cocky urologist, even with the help of a geneticist at the same hospital. I got a diagnosis over the phone about a month and a half after the biopsy of mixed gonadal dysgenesis. We began rearing the baby as a female based on much research and a general gut feeling on my part. I struggle daily wondering if I am doing the right thing for my child. I am confused and scared all the time. All that I want is for my baby to know that I am doing the best that I can with the information I have been given. I will let my child be whoever she (or he) wants. I don't care if this baby is male, female, gay, straight or bisexual. I want my baby to know that I will support her in whatever direction she goes. I just want her to be safe and happy.

I'm terribly sorry for going on and on and on.... I don't have very many people to talk to about this and I don't have anyone to talk to that knows what my family is dealing with. I fear for my child's future because of the way this society is. Already, my child is talked about in my town. There has been direct violation of HIPPA~ I don't know where from though. If I am not in the right place, can someone PLEASE direct me to a place where I can talk to people who care and understand??

Thank you for reading my story, at least the basics :)

Ashley

[proudmama]

I'm sorry if I wasn't clear-
We spent the first week of Skyler's life in the NICU to rule out CAH. We were sent home after that but had several trips back to the hospital for different appointments and because of a hernia that they thought needed to be repaired immediately. The "surgery" that we went in for at 6 months old was because of that hernia and during that surgery the urologist wanted to bring the testicles into the bifid scrotam and repair a severe hypospadias.
I will NOT allow and genital reconstruction now that I am aware of the MGD. I have been doing a lot of research about the gonadectomy because of the high risk of many different kinds of cancer.
I am tenatively raising the baby as a female but am absolutely willing to change that if the baby decides on living as a male. I will support my child's decisions about sexual identity and orientation 100%.

[Peter]

Hi Proundmama,

Thanks for sharing your story of your child. I am impressed with your determination to love and respect your child no matter what. You might be interested to know, that following your gut instinct, you have set out along a path of nurturing that is in line with the most humane best practices being advocated for intersex children. These practices are child centered, in that your child, if not having an immediate life-threatening condition like salt wasting CAH, should be allowed to mature and make their own decision about their gender and the cosmetic surgeries that they would like for themselves. I am glad that you have done your homework. I had infant genital surgery, and in the old days, the aura of shame and secrecy surrounding my situation probably did more psychological damage than the infant genital surgery itself. If there are best medical practices, the way I was raised might very well qualify as a case of worst medical practices.

Peter

[proudmama]

Peter,
Thank you. I'm deeply sorry to hear that your upbringing would fall under "worst medical practices." Stories like yours are the reason I have my determination to not allow that to happen to my child. I will fight tooth and nail to protect my child and allow her the freedom to choose her own path in life. Anyone in our lives that doesn't support this is not welcome in our lives.
Thank you for sharing a little about yourself to me and confirming that I am doing the best thing that I can for my child.

[M-A]

Welcome to BLO, proudmama, and congratulations on your determination to think of your children first :thumbs_up Not just in stopping the "normalizing" urges of the urologist, but also in your decision to accept and support your child to become whatever feels right to him or her. As a kid I could never find a listening ear with my parents, to talk about gender identity doubts or discuss oddities that appeared at puberty, and that's still a bit of a buried pain even to this day. So I think it's great you've decided to stay open about it with your child :)

[proudmama]

Thank you M-A! I hope that you have been able to find that listening ear somewhere. I just feel that all human beings deserve to be treated with respect and that race, sexual identity, sexual orientation, age, gender, etc. are just differences that make us all unique and interesting! I look forward to seeing who my child (children- I have an older son as well) becomes!

[Aseras]

Hi Proudmama! Welcome.

I'm glad you found us and I'm also glad for your decisions so far. I think you are very lucky your dr even bothered to come and tell you and to not have just snipped all the stuff out and been done with it. That happens a lot more often. Keep shopping around for doctors. Some are pushy and cocky, some are certain they always know best even if it isn't true. It's very hard to find a understanding and knowledgeable doctor. Take your time there is no rush, especially for life changing and irreversible decisions.

While I know things may be difficult for you and for others you have to explain things to, ultimately it will be best for your child to decide on their own.

Even with that you are going to have a lot to deal with for many years ahead. Many issues won't go away with the final assignment, but if you are as supportive and strong then as you are now, everything will be great.

You seem to get what many, most people do not. Consider yourself enlightened. I think most of the problems are centered around the fear of being different and the social consequences of that. It's all a perceived problem, not a real one until much later, or until society or a doctor makes it into one.

[proudmama]

Aseras,
Thank you for your welcome and your kind words.
Luckily, we had evidence before the urologist did the biopsy, of the uterus that he wanted to remove. I would have filed a major lawsuit had he done what I specifically told him not to do. I go into our appointments with information, education and supporting documentation so that I cannot be pushed around by the doctors who don't agree with the way that I am handling the "treatment" of my child. I refuse to be bullied into making a rash decision about my child's care. I also am lucky to have a very supportive extended family that is well educated. My mother is an RN and goes with me to nearly every appointment just in case there is something addressed that I have not educated myself about. We refuse to let Skyler fall through the cracks and be "fixed". I am just a mother doing what I believe is best for my child, and that is letting Skyler be who she (or he) was born as.
Again, thank you for your welcome!

[Zaora]

I can only echo the previous comments.. You are a very enlightened individual, for leaving the final choice up to your child!

I wish you the best!

[proudmama]

Thank you Zaora!

[notodd]

Ditto.

[Kailana]

proudmama, thank you for your introduction and sharing as much as you have of your family.

I actually want to hug you.

Anyways I am so very very happy to see a parent step and and protect thier child. Doctor's assume alot and can make mistakes easily enough, you are fortunate that he/she at least came out and told you before they continued with any further surgery.

I wish you and your family the best. You are on the right track, your child may be quite happy as a girl, and if she isn't, with your attitude you currently have, I am pretty sure that your childs choice to be male, is allready ok with you which is awesome to read. Your are a very enlightened parent, thank you once more for taking the time to learn and understand that your child really is the only one who can say whether she is a girl or he is a boy.

I don't suppose you would want to adopt an 39 year old. :-)

oh and holler if you need any additional information, i have a fair amount of information and understanding of Gonadal Dysgenesis, oh and only real worry is if actual streak gonads are present, not sure if i completely understood whether your lil girl was Pure Gonadal Dysgenesis, ie Swyers, or Mixed Gonadal Dysgenesis or if you know or were explained the difference?

[proudmama]

Kailana,
Thank you :)
I would absolutely love for you to share your information/knowledge with me. We have an appoinyment with our doctors on Feb 10th and I've been searching high and low for any and everything I can find. We are very unhappy with how they have treated us for the most part (very long story- what I posted was the very basics). We have been told MGD and that there is 1 streak gonad but because I am so unsure of their ability, we are going to ask for a referral to a bigger city (Dallas?). I would love for you to share any information that you are willing to share with me. Thank you!!

And I would be happy to adopt you :) However, I'm not sure how you would feel about a younger mother.... I'm only 25 myself :)

Ashley

[Kailana]

ok, I am not sure if they have done surgery allready internally to remove that streaked gonad?

if they haven't then make sure they show you before you let them do anything. A steak Gonad is a poorly developed gonad nothing more then a bundle of fibrous tissue. If a normal appearing Gonad is present then your child does not have a streaked or streak Gonad.

It is possible that she could have an ovoteste present, those are still called dysgenetic though I question why? as gonadal dysgenesis actually states that it would be a streak gonad. And a ovoteste is not a streak gonad, but the terminology is still used.

A great many idiot doctors would remove an ovoteste but they don't need to. What should be done is to have the testiclar tissue present frozen and removed from the gonad which will leave behind a healthy ovary which may indeed be capaple of normal function.

Anyways MGD typically means Mosaicism, XY/XO in most instances though there is alot of genetic variation. Along with a normal appearing teste or ovary or both gonads are ovotestes. And again there is very little danger with ovotestes as long as the testicular tissue is removed then she should be fine. Most surgouns don't understand that ovarian function can be saved if they take the proper steps to keep the ovarian tisssue. Alot would just rip them out and say they are Streak gonads. It is real easy to see a streak gonad they stand out as they dont have a normal appearance at all.

let me know if that helps if not i can take some time later and hunt down some good articles for you.

well shoot I will probably do that in an hour anyways, cause i do think you should know what to watch out for.

[Cazz333]

Welcome, proudmama. you are extremely brave and I hope you and your child aren't suffering too much. Being a religious person I ask God to watch over you both and that you have the strength to continue on the path you have set yourself ad your child. I hope you find Bodies Like Ours a helpful and informative site.

I also hope you meet more understanding doctors. Honestly they shouldn't be legally allowed to do that.

[fraulein_Maria]

[QUOTE=proudmama;22537] I got a diagnosis over the phone about a month and a half after the biopsy of mixed gonadal dysgenesis.

>>> there is a Swyer's gal here (AKA Mixed Gonadal Dysgenesis) named "acheverta" who may (or may not) be interested in talking to you.

I think she would not mind me telling you that she is happily married, and is currently in the process of getting pregnant. :)

You'll find the best information here about it on the AIS board which is were they tend to hang out, and AIS-USA is the support group that has taken this tiny sub-group of female XY people under its wing. :) <<<

[galens47]

Welcome Proudmama,

Cheers,

Galens47

[sharonk868]

Hello !
I am also a new member. Would a newcomer be warmly welcome here? Good day you guy !

[louisev]

Hi Sharon,

I think we all would like to see new folks here. Intersex conditions are rare enough that there are only a certain number of people who have them, and even fewer who get a proper diagnosis and treatment. Are you a parent of an intersex child, or are you one yourself?

[proudmama]

Hi Sharon! Welcome! I hope you have received a warm welcome here like I did :) Have a wonderful day!

[uncle festa]

Hi proudmama ,
As others have mentioned, you have time to look for the right doctors, who are wiling to listen to you and don't live and work in the past. Good doctors do exist and when you find the right one, hold on to them and you won't go far wrong. When I was diagnosed xxy, it was done by a dinosaur of an endocrinologist and the, then family doctor of how many years I don't know. As far I was concerned they didn't explain it to me in a way I could understand and insisted on only addressing my parents (I was 17 at the time). When I moved out of my parents house, I went looking for my own doctors and now have a brilliant GP (family doctor) and endo. When I see them and say "I've been on the internet and found this" they are both always willing to discuss my suggestions.

Don't for one minute think that 'all' doctors know everything about every known medical condition, cos they don't and there are a new breed of doctors out there who welcome modern thinking and technology.

Matthew.