Newbie..confused mom looking for info.

[LuckyMom]

Hi, I'm glad I found this site. My third child (I have 2 other boys) was born almost 4 months ago. At first I was told he was a girl, and then the room was a little quiet and I was told that it was actually hard to tell from looking at his genitals. We were transfered to our local Children's Hospital for the next 5 days for lots of testing. At first we thought it was CAH, but in the end it was not that...but it was hard as I started calling him a girl. It was so confusing. I had never heard of ambiguous genitalia or anything related. After several days of blood & enzyme tests, an ultrasound, and an MRI the urologist decided he would like to perform surgery to see what exactly was inside. So at 5 days old our little baby had surgery. They found one streak gonad and one undescended (sp?) testicle (which was palpable from the outside). Tissue on both sides was biopsied and were both testicular tissue. So we had pretty solid evidence that our baby was a boy. The urologist also mentioned more than once that his penis was a pretty good size, however it has hypospadias and the scrotum never fused, and of course the testicles never descended. The chromosome tests came back as one x and one y but the y was irregular(??) so they did fish studies. It basically came back as an abnormal chromosome...genetic disorder (not sure if it is hereditary but don't think so). I was told that somewhere along the way there was a breakdown in development, and he only got one testicle, which in turn did not produce enough testosterone to fully make him appear male. At the time we were discharged from hospital his diagnosis was "Mixed Gonadal Dysgenesis."

At the recommendation of our doctors (who seem wonderful btw) we have booked surgery for when he is 6 months. I'm told that it will probably take at least 2 surgeries, and maybe more "tune-ups" down the road, hopefully not. It's been a very tough decision and I'm not 100% sure about it yet. I have made another appt. with the urologist & endocrinologist as I have lots of questions still for them. On one hand I think it would better to do the surgery now, but part of me wonders "what if"...what if during development something happened that made him actually more female, which of course we cannot tell at 3 months old.

So maybe this site will give me some insight....from people living with IS who had surgeries and those whose parents opted to wait for them to make a choice. Either way I intend to be very open with my son about what happened. I want him to know that our decision (whatever it may be) was the hardest thing we ever had to do. I love him to pieces and I just want him to be happy. I don't want him to hate me when he grows up. We have a very solid family and he has two older brothers who adore him.

I'd love to hear from anyone who thinks they can help me. If you made it this far thank you for listening!

[Peter]

Hi LuckyMom,

I like the your using the name "LuckyMom". That indicates to me that you love your child. You have related much material about your child's condition. As I underwent infant genital surgery myself, and my past was shrouded in shame and secrecy, I would just like to say that having a body that is different is not such a bad thing. I have wonderful friends, a nice job, and life is generally pretty good for me. You mention that the doctors want to do infant genital surgery in the coming months. In the past, it was common to sexually assign children with mixed gonadal dysgenesis as female, and to surgically re-enforce that assignment. However, I know some people with mixed gonadal dysgenesis also grow up to reject the female sex assignment. You mention that your child has a sizable penis and one testicle. I am not offering medical advice, and only your doctor knows the details of your child's situation. It seems that early infant genital surgery should try to do as little as possible, perhaps aiding in urination if voiding the bladder is a problem, or other procedures that address some immediate metabolic issue. I know that there is a growing movement among intersex people to advise that genital surgery generally be delayed until a child can have some input into the choice of sex assignment, if the child even wants to have a surgical sex assignment at all. I would just like to say that despite the confusion and concern about intersex children, that we grow up with the same wonder and energy for life as other children do.

Peter

[peaceandparty]

hello there luckymom

i have to tell you as you can already imagine

it is and will be difficult for you and any other parent to make a choice for their babies welfare,especially if friendly doctors are very sure about the operations success

there is no easy way of starting to say what i want to say here...so:

1: its going to be difficult because
a)you want your child to be as "normal" as possible
b)the doctors seem to know what is best for you and your child
c)any action you take,you will have to be responsible for,for the rest of your life
d)when you choose to tell your child about their birth,it will be a catch 22 situation

i feel for you but greatly like your attitude
you will do your best

at least you didnt abort!
because many babies that can be termed intersex
are more and more being either aborted or cut or sewed

you obviously will do your best to look after your loving child

i cant have children because i have xxy chromosomes
called klinefelters syndrome
but dont learn everything you read
we are all different......
and you are as you say lucky...lucky to have another baby...half you and half your partner.....and half of each gender.....that is a gift...as i know

so the first reply couldnt be topped in its politeness
i think sooner or later we have to allow more babies to be allowed have their genitalia that they are born with...there are so many more cases like this that are un-reported
its not that unusual at all
especially seeing as doctors are so complacent about the whole procedure
---who knows how many are born that way a day!?
---or how many xxys there are !

interesting

and thanks for your story

[Sofie]

Hello LuckyMom

There used to be a supportgroup for parents of a child with »Mixed Gonadal Dysgenesis«

You could try
http://www.xyxo.org/
or
http://health.groups.yahoo.com/group...syndrome_xyxo/

From what I've heard from parents, hypospadias-repair on infants is ususally not succesful and has to be repeated many times.

[Kailana]

Hi there.

I see you are trying to do your best, and it is likely you may be doing what is best for your child. I actually really hope everything works out.

But, as i am one of the very angry people who doesnt agree with what my parents allowed doctors to do I really have to say this.

Just because your child has a functioning testes, and has a Y chromosone, does not mean that he will grow up to be happy as a boy. There is a possibility that he may be quite happy and have a pretty good life as a man.
On the other hand, what if he isnt happy? I ask this only because doctors made fairly clear to me as a young teen that i wasnt a boy. The constant asking if i was happy as a boy over and over made it pretty clear to me that something wasnt right. Each and everytime i told them i was miserable i was ignored. Each time i told them and my parents i usually got a response "your just a silly little boy" from my parents. My family pediatrician actually told me i was female but after he talked with my parents and called me back into the exam room, he wouldnt tell me anything else. I am not technically what people would expect, I am XY/XO to make it simple some of my Y chromosomes went wondering off and some anatomically female things developed. At birth i was like your son, Thought to be a girl, all the male things were still inside, hypospadis like your child too. And much like your child i looked like a girl, my early medical reports tend to say female, she, her in them because that is what they saw, only later to have everything repositioned and lowered. I however do not identify as a man and never will. I didnt find out tell 22 that i was intersexed. My family wasnt so kind or caring as you seem to be. from 22-35 where my worst years imaginable. Constant depression, several suicide attempts, another forced surgery without my consent at 31 years of age. I am now 36 1/2 and am transitioning female, I am one of a few intersexed people who identify as both intersexed and transsexual. I consider myself transexual not because i am transitioning now, but because as I see it. The gender assignment to make me male as an infant is what makes me transsexual. My gender, the way i was born was altered. I know many intersexed don't really like to think of there reconstructive surgeries to feminise or masculanise there genitalia to count as making them transsexual. I however do, I am a true hermaphrodyte, with both ovaries and testes, two complete sets. <<<------ That is my gender, that is how i was born, that is what makes me what i am and drives me to be who i am.

What i would like you to truely think about is that if you allow your child to be surgically assigned as a boy. Lets say as a teen or as a young adult, your child says he isnt a boy, but is a girl. Will you be able to accept that? Will you be able to comprehend that your child may not ever come to accept the choices you are making now for him. I am asking, only because the love my parents once had for me, i know longer feel, there actions pretty much prove just how much they don't care for me. In all the things i say or do or what i read in your post. I want you to know that i am not judging you as a bad parent. I think your sincerety in caring for your child is awesome. I just hope that down the road, should your youngest not be happy you will have the same understanding you now are sharing with us. Because there is nothing worse then coping with the fact that your parents don't care for you. That there words when they talk to you only causes more and more pain. that there little snips, critiques, judgements just whittle you down more and more.
I hope you will have the same love you have now, should your child chose to change there gender later. It is just a possibility, I am definately not the only almost male, who disagrees with the gender assignment forced on them as an infant.

Best wishes to you, your child, and your family. I really do hope your child is happy. But many IS children grow up only to be very miserable, for many different reasons. I hope what you are doing now works out for your child. But i fear your child will grow to be another one of the miserable people who struggle day after day with what they are.

Good luck.

[prince....ss?]

I was born with something similar.

My first question is what kind of surgery? What do the doctors want to do? What other sex organs are present?

I will tell you that when I was 11 days old they reassigned me to female. I am 46xy and they removed all the male parts put a dress on me and called me a girl. So I would be interested in the plan before I make any comments. I am willing to answer any question you have…first off relax…you have time to decide things.

[Kailana]

when the scans were performed were you present?
I am asking because many parents arent told everything. Did they show you what was inside? Before you give consent to do surgery i would make sure you see what is there. Because it is possible though extremely rare that your child could have female structures internally. Before you make any permanent decisions you should see for yourself if there is any other structures present.
If you read any other posts, please read my post in the surgery section. My last surgery July 14-15 2002, was performed after my last overdose. No one asked me, I didn't give consent for it. And too this date no one at the hospital will even acknowledge what they did to me. But i have MRI scans from 2004 that now look a great deal different then what or how i was before.
As an intersexed person, with some horrendous experiences, nothing troubles me more then knowing Doctors chose to force surgery on me. Particularly as i never would of allowed that to be done to me. The whole thing about my depression, suicide attempts comes from a deep rooted knowledge that i am not nor will ever be a man. That may sound a little confusing as i have stated i am both male/female true hermaphrodyte. I see a big difference between genders of male and female. You could consider me intersexed, hermaphrodyte, even transsexual, they all apply. But please dont call me a man. That is the one thing that bothers me most. I am not, nor will i accept what Dr's thought was best. I am fighting for acknowledgement, acceptance, and really just for the right to be me.

Many intersexed people are advising parents to wait surgical assignments, because of there experiences with sugeries as well. Many of us werent given a choice, Some like me are even jealous of those who were fortunate enough to be allowed to chose as teens, with there families support. A lot of us aren't, werent so lucky. Instead we are fighting for our rights as human beings, we telling doctors to stop treating us as freaks of nature. We are urging the medical community to be open and honest with us, and with all our years of trying, searching, asking, begging for answers, very few of us can get our medical records(that havent been edited), dates of surgeries, and some like me, even our families turn away from us.

i apologies for causing any grief, anger, or thoughts of what you are doing is wrong. I am just one of many, who doesnt agree with genital reconstruction on intersexed children. Or more correctlystated, surgeries that make it even more difficult to correct later down the road, should a child/person not agree with the choices made without there knowledge. If you do chose to allow surgery, make sure as little is done as possible. Talk to the surgeons, let them know, that you are aware that some IS people grow up to not accept the surgeries forced on them and reassign later. And please keep all of your childs medical records. Because those may be of more importance than what you could possible imagine. They provide a detailed record of what was done, and for someone constantly questioning why there anatomy looks the way it does, it can clear up many questions and provide answers that you as a parent will find hard to remember.

I really hope something i wrote provides some guidance. Maybe a word of caution or something. And please respond to anything i say. it is appreciated. And may provide guidance for other parents out there who arent sure what to do either.

Sorry if this sounded mean. I didn't mean for it to do so, I am very happy to meet you LuckyMom, and am happy to see you introduce you and your family. I hope this wont cause distress, i am sure it will, but please speak about it. Nothing we do as people is without its downfalls. We needs parents to speak there minds. We need people to understand what it is like for a parent as well to struggle with choices Dr's say is best for there kids. Every little bit of information is helpfull to so many others.

All my love and apologies.

[steve/lisa]

Sorry,I guess i put my post on the wrong page.I still get confused as to which page to put it on or is it the top or bottom of the page,I put mine on either 1st or 2ed page think 2ed one anyway good luck to you and your husband and the child too.Lisa

[peaceandparty]

just responding to apple on the point of the childs level of love and acceptance for the mother:

this love level will depend on her honesty with her child

and not because someone says it WILL BE THAT WAY

no-one knows how any one will feel
but rest assured
with so much in-built hatred from intersex people in general---we are on a sad and lonely road if we continue to treat strangers like they are stupid!
plus
i believe that the best way forward is through encouragement -not blame

so i would hope that what we write here for any mom or pa is something of reality and hope

the reality being that its a catch 22
there are only two accepted sexes in the world still(even though intersexed people are a huge part of everyday society for the last 50 years or more)
so no matter what you do-you must stand by your child-no matter what!
because if anyone wants a child you cannot choose what it will turn out like(oh yeah sorry...i forgot about certain technologies like abortion)

the hope is
that moms and dads can look through the smoke screen that doctors put in front of them
and the hope is hoping that people continue to care for eachother by writing what they know
and hoping that everyone has an interest in intersex issues by the end of 2010