Newbie..confused mom looking for info.

[peaceandparty]

i also welcome you and luckymom back into the conversation!

what do you lucky mom,need to hear , what questions have you got?

maybe you would like some info on what do all the words that the doctors use mean?

i am sure there is help to be found here lucky mom

this post has just got overwhelmingly complicated
can we start again lucky mom??
will you comment once more!

[Melisma]

Luckymom,

I’m so glad you’re seeking advice from intersexed people. I urge you to go it insa.org and read some of the stories written by adults about their surgeries. We all know that all you want to do is to make your child’s life as good a life as possible.

You have plenty of time to decide about surgery. Wait. Wait a few years, at the very least. If he can pass urine without any trouble, then you have nothing to worry about for the time being. You’ve been on an emotional roller coaster since his birth, and you need much, much more time than five months to make this kind of decision. It can’t possibly be an issue before he starts school, anyway, can it? The only people to see his genitals before than will be you, him, and the doctor. Even removal of the streak gonad can wait – the chance of cancer there is nil until at least puberty. The more growing that can be done and out of the way before any surgery, the better his chances will be of having less scar tissue and better function.

Get a second opinion. If it’s at all financially possible, get a third opinion. Ask your doctor to set up meetings between you and people he’s operated on before. If that’s not possible, try to get a face-to-face meeting with other intersexed people. You will hear the same thing over and over… wait, wait, wait.

I know my own mother well enough to believe that what you want for your son is to give him the life he would have had if he had been born with a body that had nothing out of the ordinary. Let me stress that THIS IS NOT LIKELY TO HAPPEN. Even if the surgery leaves him with a perfectly ordinary set of external genitals (and this is not very likely, especially if the surgery is done in infancy) I was born with a perfectly-formed set of female external genitals, and I STILL knew that my body was different.

I’m not saying surgery should never be an option, but if I were you, for the time being my focus would be on making sure he knows that his un-ordinary body is as beautiful to you as it should be to him. That will give his self-esteem a much bigger boost than surgery that may or may not make him look like all the other boys down there. You may decide to go ahead with surgery eventually, but wait a few years to reach that decision.

[LuckyMom]

I just have so many thoughts/questions/fears in my head it's hard to even begin to put them down in writing. I don't like confrontations and this situation is very tough on me emotionally as I see it is on some of you as well. My husband read this thread and I'm glad as he understands my fears a bit more. He wanted me to come back on and review a few things about our son...sorry for repeating but I just want to put it all down at once here...

He was born with ambiguous genitalia, resembling a small (but good sized according to urologist) penis & labia/unfused scrotum..also with what I would say severe hypospadias. One testicle was palpable by the urologist. My husband was present during the ultrasound which was inconclusive whether the gonads were ovaries or testicles...a partial uterus and fluid filled vagina that was sealed (?? husband thinks that is what they said) were noticed. MRI was inconclusive as well therefore exploratory surgery was performed. An undescended testicle was found on the (left?) side and a streak gonad on the right. Both sides were biopsied and turned out to both be testicular tissue. Preliminary karyotype came back as a normal "x" and abnormal "y" so fish studies were done...final karyotype I'm not even sure the official name but I think out of the 50 cells they looked at, about half had a normal "xy" and the half had an "x" and I can't remember now if it was a marker or something else...I'll be asking that among many more questions at our next appt. Oh, and SRY gene was found on the y chromosome. As well our baby was producing testosterone at birth so we know he can produce it and we know his body responds to it. Final explanation by docs (I think I have it right) is that due to the missing y in some of his cells, his body did not produce enough testosterone to completely form two testicles, therefore some of the female parts did not fully disintegrate, and his genitals did not fully form.

I know most people on this site are very against the infant surgery, but I & my husband are curious to know if anyone on here feels the opposite. I find it hard to find IS people who had surgery as a baby or child who are happy with their outcomes as most of them probably aren't searching the internet for advice/support. Maybe I'm wrong...I don't know.

We are postponing the surgery for now, at least until we speak again with both the endocrinologist and urologist.

We truly do want what's best for him and it's our job as his parents to figure that out. I do appreciate all the information and stories you have provided me with. It definitely has made me think about it and I want as many answers as possible before I make such an important decision. However, the decision is one my husband and I must make together. We can't help, as parents, to worry about him growing up and possibly being teased etc. among other things.

For now I'm trying to just enjoy my little one (he's 3.5 months now and smiling, cooing, giggling and just seems soooo perfect just like his two older brothers). As well, he seems as healthy as can be and I do feel so lucky for that.

Anyway I probably won't be posting too much but I will read any comments. I just need to take a bit of a break as it seems to be really consuming my every moment and I'm in tears at least once a day lately. I have to be strong for my children.

Thanks for listening once again. Take care.

[prince....ss?]

Respond to this post and I will be able to PM you. I’m glad you came back. It is a very important decision that you are making. Some of us that were put under the knife have thing pretty rough as adults and some of us do not. I was very close to how your son was born. I have full medical records and pictures of before after and during my surgery at ll days old. I would be happy to share my story but I rather do it by PM. One more post will open that up for you.

Be easy on yourself!!!

[Dianne]

We are SO GLAD that you came back! It is far too rare that parents have the courage to seek information beyond their immediate medical circles and it is such an important area.

It is likely true that those of us who are vocal probably do so because we were in the majority who were "mis-assigned" or have medical issues arising from our IS. I would suspect that there are other IS who were raised in a gender that suited them and who have no significant medical issues and who live quietly and anonymously. I also KNOW that there were IS who's medical or home-life condition were so bad that they did not survive to adulthood.

I think that the most important point that we (IS) need to get across is that gender isn't about body parts - it is about the brain/mind. The best current understanding is that gender is set inutero in the first month of pregnancy and most likely related to the hormone levels present during the critical formation of the brain. The physical attributes of sex develop around the 7th week of pregnancy and are triggered primarily by the chromosomes. (Others here are more knowledgeable in embryology than I am so I stand to be corrected.)

That you want your child's body to appear "normal" is understandable but you should be aware that your child's spirit, personality, may not turn out to be that of a boy. (I was probably physiologically closer to "normal male" but by an early age it was apparent to anyone who chose to see that I was not at all "a little boy"!) The greatest harm for an IS child is not what is done medically but what is done psychologically - by people with "good intentions" - in not accepting and respecting the child's own expression of who and what they are. The medical aspect of IS can be managed and treated but how your child identifies is part of their inherent Being and is unchangeable - it must be accepted as-is and nurtured.

Thank you for coming back and for sharing with us. You have no idea how encouraging it is for some of us to encounter parents with an open mind!

[RW]

There's something that I haven't seen being said here - or at least not so strongly - which I'd like to add:

Luckymom (and husband) - Congratulations on the birth of your child. A brand new human-being has entered this world. How wonderful is that! I can't think of anything more amazing.

And to your child... Welcome! I hope we (the other people in this world) can show you around and make you feel at home.

(Please don't think that by saying this I'm ignoring the difficulties of the situation - I just think that this needs to be said loud and clear.)

RW

[peaceandparty]

absolutely
regardless of how this will turn out

it has turned out great already
your other children have another brother/sister and this time its an extra special gifted child


i truly believe that intersexed born people have a lovely way about us
regardless of being xx or xy or whatever-we can be very caring individuals

i had a feeling you were still reading luckymom!
and i am sooooooooooooo happy that you kept reading

maybe come back in a month and we will try and set up a page for you
so that you can read this page and read only tips and advice instead of all our thoughts emptying into yours
especially after your pregnancy....you dont need the added stress
please know that i am new here to blo too
so we are welcoming eachother here!
and i hope you will check in with us occassionally through life just to let us know
because we care
we care a lot

tell us what you want to hear!?
if thats possible...lol
have a lovely week!

[Melisma]

>>I know most people on this site are very against the infant surgery, but I & my husband are curious to know if anyone on here feels the opposite. I find it hard to find IS people who had surgery as a baby or child who are happy with their outcomes as most of them probably aren't searching the internet for advice/support. Maybe I'm wrong...I don't know.<<

>>We can't help, as parents, to worry about him growing up and possibly being teased etc. among other things.<<

That's a good reason to ask your doctor to put you in touch with other families he or his colleagues have worked with. However, the fact that there's no anecdotal evidence of people who were happy about having this surgery done as infants would be setting plenty of alarm bells ringing in my head. It doesn't seem likely to me that this is the case, given:

We live in a society where people like to debate
The Internet gives us a place where we can anonymously do so
THere is so much information out there from people who wish they hadn't had infant surgery

If there were people out there who were glad they had had it, I can't imagine any reason why they wouldn't be chiming in to the discussion.

I didn't have infant surgery myself; as I mentioned earlier, my outsides looked unexceptional. But I've talked to enough people who have had it to know that no amount of teasing could possibly be worse. As others have pointed out - as much as we'd like there to be, there is no completely reliable way to predict how your child will develop. Could avoiding teasing possibly be worth the risk of having him develop in a way the surgeons couldn't predict?

I know plenty of non-IS boys who peed in the bathroom stalls instead of the urinals, just out of a desire for privacy. Nobody has to see your son's genitals unless he wants them to.

[JOS]

LuckyMom you have a very lucky baby.... great parents who are trying to look out for him.... and great timing since these days people are given more information by their doctors. Subsequently doctors get more feedback too.
I don't know if this helps much, since you don't know exactly which IS condition your child has, but my own searches over the past few days revealed this paper.

http://www.hawaii.edu/PCSS/online_ar...ensitivity.htm
(sorry if the link doesn't work but I'm still fairly new to this)

The article is quite hard going but it does demonstrate that secrecy and shame surrounding IS can be extremely detrimental. Ive put this extract in because I really identify with it...

"After learning the truth, one of the first questions that patients ask has to do with whether their parents had known about the condition. Secrecy is considered a breach of trust and is harmful"

In my opinion a child born with an intersex condition will always have an intersex condition no matter what surgery s/he does or doesn't have. Your child is lucky because both of you will be able to explain that it's ok to be different to the majority and tell them that there are other people with an anatomy just like theirs.