Newbie..confused mom looking for info.

[peaceandparty]

gender has very little to do with the equipment1

great words

[LuckyMom]

Wow thanks for all the informative responses, positive or not I do appreciate it. It's been a lot to take in and I was in tears again last night. I had a nice long talk with my husband who is very supportive and just wants to protect our little baby too.

Peter - Thanks for your kind words. I am a lucky mom...I have three healthy children. This could have been a lot worse, as I saw at the children's hospital during our stay. Thankfully it is not life threatening. It's just hard to talk about it with people because most simply do not / would not understand it ...that is society & I suppose we are trying to protect our baby. Sounds like you are doing well which is nice to hear. I have read that most people diagnosed with Mixed Gonadal Dysgenesis are assigned as a female ... partly due to short stature?? Not sure what other reasons but I certainly don't think future height should have anything to do with it. Although I did read somewhere that in the past many IS babies were assigned female as it was easier for the surgeons...I think that is sad and things have come a long way since then. Yes he does have a sizable penis but still would require 2 testosterone shots at 5 & 2 weeks prior to surgery just to give the surgeon more to work with.

peaceandparty - Thanks for your messages..you seem to be very opposed to early surgery, like Kailana, which is fine and understandable. I like to read everyone's stories, even if they make me a little sad and more confused. Btw I'm west in the globe if you consider Ireland the center)

sofie - thanks for the links I will definitely check them out.

Kailana - sorry about your past You don't need to apologize. I could not imagine going through what you have. I actually have thought about the possibility of him at some point seeming & feeling more female than male. That is why I'm not 100% sure on the surgery. However, this whole situation has opened my mind so much and I know that might happen, and I will support my child no matter what. I think the hard part in those situations is friends, family & just people who again probably wouldn't get it. My husband was present during the ultrasound, but neither of us were there for the MRI (I had to wait outside the room). We really have wonderful doctors. They are young like us with young families and therefore we would hope they have the latest knowledge. Because it was difficult to tell on the ultrasound or MRI if the gonads were ovaries or testes they decided it would be best to do a scope surgery. That wasn't an easy decision either but it proved extremely informative as we found out that both sides have testicular tissue. Also, he was producing testosterone at birth which was another good sign (I'm told babies are born in a "mini puberty" state.)

I really hope my son does not grow up to be miserable...I hope we can help him in every way possible. I hope a strong family support will go a long way.

prince....ss? - The surgery is mostly reconstructive/cosmetic from my understanding. Fix the hypospadias, straighten the penis (it's slightly curved), fuse the scrotum. Also I believe they will be bringing the existing testicle down (I think that would be medically necessary ??). I've been told it would be at least 2 surgeries. There is a uterus present but it's not complete (more of it was noticed on the side of the streak gonad), as well it appeared there was a vagina but it wasn't complete as well (if doctors are correct then the body didn't produce enough testosterone to completely dissolve the female parts and only partially formed the male parts). I'm not sure if they plan to leave the female parts or not...Like I mentioned before I have made another appt. with our urologist so I will be finding out more. I think I've been in a daze about it for the last few months and wasn't really prepared at our first appt. since leaving hospital. I do know that his karyotype was "X" and then an abmormal "Y"...after fish studes (they tested 50 cells) 1/2 had normal xy and half had x and a "marker?" chromosome...I think that's the term. I will be asking the docs again if it is considered mosaic because after all the terminology thrown at me I just cannot remember what they said. Very confusing but I'm slowly understanding it.

Diane - thanks for your opinion. I can see where you are coming from, however I would think there have been more medical advances since you were born. But yes, from reading many articles on the web I do agree that doctors cannot tell what exactly makes a male & female..what goes into the brain & when. I understand that the exterior does not always match the interior feelings. I'm taking that into deep consideration.

Okay now that I'm halfway to writing a novel !!! I will just add this...my husband and I do love our children all very much. Our biggest thing with the surgery is to try to protect him so he can grow up confident and happy and not appear somewhere in the middle which might be even more confusing and hard to deal with. I've learned that there are many different variations of IS but in our case I do feel the doctors have provided us with a lot of info. I am not ashamed of him at all and I never want him to feel that way which is why I intend to tell him one day. Not sure when that would be.

I think in the past it sounds like these situations were covered up which is sad. Today the medical community is doing more to find the answers. Our endocrinologist told us that before they would work on getting info for several days before telling the parents anything. Now they keep us informed as they go, even if it was a bit of a roller coaster ride for us.

Please have an open mind from your end as well, and understand that it was probably not easy for your parents either. I hope I have not offended anyone. I look forward to hearing more.

[Dianne]

Your child's condition sounds remarkably similar to what I believe my birth state was (physiologically). Having the "makings" of a possible male, it was probably easier (medically) to do a little nip & stitch than it would have been to put things back to the female form. (I also suspect that the demand for and adopt-ability of male babies was also a factor.)

There were two problems with what was done.

First, the infant surgery and lack of development at puberty made later surgery more difficult and with a less satisfactory outcome (less "material" to work with).

Second, although my adopted father also had a form of DSD (disorders of sexual development) which probably made it a logical placement, my adopted mother's refusal to acknowledge my "psychological gender" (which was apparent by age 3 or 4) and insistence on fighting it made what could have been a "minor embarrassment" into a major disaster. Had I been allowed to express my nature without fear, at least in the home, I could have handled the awkwardness of outside social "problems" and been a happy child. The body can be changed but a person's nature can not.

From my heart I would simply ask that you be open to your child's gender expression, even if it is contrary to the decisions you make now. If you have guessed wrong, you have still acted in what you felt were the child's best interests. The doctors may know what bits and pieces you child has but only your child will be able to tell you if he's a he or she's a she and you will have to wait for that.

You ARE lucky! You have the chance to watch one of nature's marvels unfold - the emergence of a human spirit.

[peaceandparty]

my outstanding thought and remark here has to be

that......giving any human being a shot of testosterone will automatically alter the natural brain pattern of any human
now-give a few shots of testosterone to a baby
"to give him something to work with"

this is quite shocking....and in no way would i care to have luckymom think that i am anti anything
its just that i have my views and of course am listening and concerned
and in fact i will do a very private video for you so that you can hear my true self....so u can maybe understand more!!
i hope!!!

but
i think giving babies or young children shots of a hormone is too young for the baby or child....its so similar to the points raised with animal cruelty
i think real statistics(meaning ones that are not published in "real" doctors reports)
would show judging from most intersexed people who have gone through adulthood and had varying degrees of stress related problems due to their intersexness...that.....the baby should be left as best as it can be,as it is naturally born....yet society is way off from being that way......

regardless though luckymom!
your child will love you a lot lot lot
for knowing that they have loving caring parents who want the best for their child
its better you making the decisions with your doctor
rather than your doctor making the decisions......
and when your child finds out about these blogs and sees what lengths you went to to take special care of the needs of your baby-then it will happy mothers day for the rest of your life

i live in germany where the children have lots to do...and i am in their company a lot
they attract me and i attract them into playing and meeting and learning together
children are great and the feeling is mutual
you are so lucky to have the ability to have children
so till next time-thanks for the response...it means a lot!

[Kailana]

Apparently you missed something important, your child has a uteris, and a vaginal canal. with all your other statements about the undescended testes underdeveloped penis and hypospadis, its me all over again, and yes prin...cess tooo. if you look closely we both identify as your child. She was assigned female, i was assigned male. Neither of us are happy with what our parents did too us. There is no right choice at this point. i really really hope you get this point. IF YOU CHOSE TO GO AHEAD WITH THE ASSIGNMENT MAKE SURE YOUR CHILDS DOCTORS NO THAT UNDER KNOW CIRCUMSTANCE ARE THEY TO REMOVE ANYTHING THAT IS FEMALE IN NATURE IE THE UTERIS AND THE VAGINAL PASSAGE. Those are your childs to choose to do with as he/she chooses.

Now then about the marker being xy and x with a marker its just another way of saying xy/xo or 45x/46xy mosaic male i am very curious now whether or not there are ovaries as well. i think you need to get a copy of the MRI scans taken. Cause i would bet there is more there then your being told. And this again is me. I have both dont you get it, i have lived a fairly messed up life, im 36 infertile as a man because my testes never ever worked, That happens when there undescended. If any of those doctors are guaranteeing that your child may be able to father child, they need a kick in the head. There are no guarantees at all. Just as there are no guarantees your child will be happy ever with what you choose to do. That is why there are so many people like me telling parents to leave there children alone, let them decide. As others have allready mentioned any cosmetic surgery to fix urinary problems, is ok, as they may cause risk to your childs health, But i say this to you, having a vagina does not pose a threat to your child. If it did there wouldnt be woman in the world who had one. Imagine your child is you, and you are a woman, would you approve of your own parents having your vagina sewn shut. Can you contemplate the amount of loss your child is going to face if your child is a girl. Do you have any concept of what it is like to be treated as a transsexual person rather then as an intersexed person, have you any idea of the amount of discrimination i have had to face within the medical community all because my parents gave permission to allow doctors to surgically assign me as a male. I know what it is like to have been sewn shut, i also know what it is like to have an Uncle tease me about openly in from of my family and none of my parents came to my defense, My mother broke down in tears my father left the room. And me well as usual i ended up with my 2nd overdose, which i have allready posted. And the forced surgery again as an adult, only made hate my parents that much more. Your Childs Doctors are scum. Get new ones. There Butchers, sadistic, barbaric butchers and nothing more.

@%$^ #@%# #@ %#$
LEAVE YOUR CHILD ALONE- I pray for the day your child tells you she Hates you

[LuckyMom]

You're obviously very bitter and I'm not going to even try to defend or explain my thoughts and feelings anymore.

[prince....ss?]

Make 5 posts then the PM fature will open. Then I will give you my phone number and if you wish to discuss things in person I would be most willing.

You have a huge decision to make. I can not tell you what to do but perhaps my personal experiences would help you feel better about the decision that you make.

There are some serious pain and anger associated with this decision. But nothing is ever black and white.

Hang inthere luckymom your doing fine!!!

[JOS]

Hello LuckyMom.
I'm so pleased that you have such a brilliant attitude towards finding out about the issues that will affect your child. I really hope that you can keep your strength of will to relay all that happens to your child.
This is probably quite a confusing time for you and I highly recommend you write everything down when the doctors tell you things. They won't mind if you do this, in fact they should welcome it.... after all they want you to understand the decisions you're making.
Medical opinion changes over time as more is learned, so what they say now may not be the only approach possible in the near future. Please please check that the doctors advice is based on medical facts and not personal opinion (as I have experienced). If you decide to alter your childs appearance on the basis of asthetics this will affect them for the rest of their life, no going back. That's 60-90yrs (or longer hopefully) living with a decision which their parents felt forced to make for them in the few months following a diagnosis.
Also every anaesthetic carries a risk. Please just stick to what is for health only.... you wouldn't operate on your child now if a large nose was the issue and that's an organ always on show. Perhaps you could decide that your child is not 'male' or 'female' but instead 'inter' and that this is OK.
I'm so glad to see your side of the story, it helps me to see how emotional my own parents would have been and reminds me how much they could ONLY rely on what a handful of doctors advised them was for the best (they didn't have the resources we have today and didn't understand half of what they were told). I know that my mum can remember very little of what she was told and wishes dearly that she had kept a record of everything so that she could better explain why she made the choices she made.
So thank you

[Kailana]

I apparently have upset you. I am not so sorry to have done so. What i want you to really think about, as this is extremely important.

Your child has allready begun developing, the entire time in your womb, with a lower amount of testosterone. Regardless of the reasons why, your child who you see as a little boy brain, has allready been lead on a path all its own. Currently there is a debate as too when a child developes its gender identity. Most would say that it has allready developed. In the past it was assumed and child could be raised as a boy or girl as long as Dr's were allowed to do surgury, Time has proven that hypothesis wrong. Brainn developement doesnt work that way.

Right now it is still a guess, hypothesis, as this hasnt been proven. Fact is in the science world, a hypothesis itll remain untill years from now when the medical community decides tha a hypothesis it is no longer and now using fact- they will claim its a theory. As a theory it is not a law. In the scientific world a theory is something that is believed to be true. But has not been proven be on all doubt. When and if this hypothesis is ever deemed a LAW, then perhaps people will stop letting Dr's cut there children up without there consent.

Ok now that may not have made sense. And yes Lucky Mom i am very upset. As i see your words, and as i hoped you would understand, you came here for your childs well being. But after reading a few of our horror storys and seeing just how mad we are with what our parents have allowed dr's to treat us you run away and hide. Your child is going to have so many issues later in life, that your going to feel far worse about then then you do now. Here we are trying to open your eyes and get you to think about what you are allowing Dr's to do. We are the ones with the knowledge. We are the one living with what has been done. We are the struggling day after day with finding a place of normalcy. For many of us its a never ending struggle. A great many of us dont have the support of family, A great many of us are afraid to tell the people we care about about us, because our experiences tend to show just how badly family, the medical community, and religous groups treat us. As for society, everyday people on the street, there very understanding. But it takes huge amounts of courage just to be able to talk to them most will never know why i look the way i do. People on the whole are a great deal kinder then Dr's are telling you.
There is no rush no urgency to make your child appear as a normal boy or appear as a normal girl. That is why i am telling you to leave your child alone. People will understand, people will accept your child as a kid. just like they treat there own. When your child tells you hes a boy, or shes a girl, thats when you should be worrying about having any cosmetic surgery done.

I really do hope you read this, as i mentioned before your voice is desparately needed. I fear though as i have scene this before, from both mothers and fathers, you come in looking for advice, usually ignore what your told, surgery is performed, and then you dissappear, never to be heard from again. After all this time, i wonder, if any of them will ever come back. Is it guilt afterwords, is it shame, that keeps them from speaking. Are they so tied up in admitting they were wrong, and should of left there children alone. One of the main reasons i come here, is to provide some semblance of normalcy to those who need it. I hope some little bit of my knowledge catches some little shred of humanity and klings in peoples memory. Last night was rather trying for me. As i am nearing my 5 year anniversary date for my last surgery i am not coping so well, but that is not important right now. What is is that people see read feel what i am trying to say. I am an intersexed person, not male, not female, just intersexed. An odd combination of both. I have feelings just as you do. I can cause hurt too, just as you can. I am far from perfect in anything i say, or anything i do. But, i try to help where i can. Perhaps what i write isn't what you were hoping for. I only have my experiences to draw from, and my experiences arent anything anyone would want to have. So far i am in agreement with most other intersexuals, leave your child alone, do as little cosmetic surgery as possible, and for the best interest of you, your child, your family, let your child decide what is in his or her best interest.