severe hypospadia

sorry i cannot help you, but i can relate to your son having to undergo surgery.
My son had testicular torsion and had surgery at 4 mths old.

Hope all goes well for your son.


Amy

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I think the reason the wrong sex was chosen for the children back then is because they used to just make them all girls before DNA tests came around.

Is it at all possible to wait until he has a full understanding of the procedure? I would think at 5 months it would be a bit too rough on him.

I don't know from a medical perspective - but I have to agree from a cosmetic perspective that it is much better to wait. I was given elaborate surgery on my left eye as a toddler and again as an older child (I was 2 and 10, respectively, for the surgeries) and the operations gave me the appearance of normal eyes but sacrificed all my functional vision in my left eye. I would have preferred to have a wonky eye than a blind one.

I would be afraid that by altering the tissue and structure of his body now, when it is so small with no margin for error may permanently change his sexuality without his consent.

Are there compelling reasons to do it now beyond cosmetics? I can't help but think that surgery would be better postponed later for at least three reasons:

1. his genitals will grow as he grows, and more genital tissue to work with is a good thing

2. he won't be in diapers

3. he can be in charge of the decision if it is done MUCH later (like in his teens) and decide if he is willing to sacrifice some sexual tissue for a better cosmetic appearance.

Of course if there is a geniune health need to construct different external genitals for him then I say go ahead but only to do that which is actually necessary for his health, not for cosmetics.

I am so sorry to hear of your son's problems. I know this is a terrible burden on you and your family. I wish I could give you definitive help with this problem but it is clearly beyond the scope of my knowledge because of the severity of your son's condition. However, there are a few things I can address.

First, don't let anyone rush you into a decision to do anything. Many doctors will strongly recommend that immediate action should be taken and that is not the most prudent direction to take. You have several years before you need to really do anything and that is time you can take to educate yourself about all aspects of this condition and the treatment avenues available to you.

There are many sources of information available on the internet and properly investigating them will take several months to do adequately. At first, you are going to become very confused but eventually, it will begin to make sense and the proper course to take will become self evident. At that point, you will become at least as knowledgable as your doctors if not more so. That is when you will be able to make a truly informed decision and the one that is in the best interest of your son. Some doctors recommend surgery as soon as possible and may strongly solicit you to have surgery on your son. Don't let them pull you in. Don't do anything until you feel absolutely confident in your decision.

From your description, it sounds like your son has either no penis or a very small one that could be confused with a clitoris. Many surgeons will recommend a sexual re-assignment from male to female. From everything I have read and everything I have heard, this is not a viable option. A male is a male regardless of what his genitals look like and many who have had this reassignment are very unhappy about it. They feel like a man trapped in a woman's body and indeed, many reject their assigned sex and go back to the sex of their birth. It's just more normal and natural to them. There is also the problem that goes along with it that if the re-assignment is done, the source of testosterone, the testicles are gone and your son will be on hormone therapy for the rest of his life and from the people who have gone through this, it is not an acceptable thing to do. It causes all kinds of problems throughout their life. Search the internet for information about David Reimer, Christine Chase and Howard Devore and read their stories for more information.

Join the groups like the one at Yahoo.com that are for parents of sons and men with hypospadius/epispadius. They can be an invaluable source of information and guidance in your research. Listen more carefully to the adult men who have this condition than parents of sons with the condition. The men are the ones who live with this every day. The parents are viewing it remotely and from a distance. Most of them also only have the perspective of the condition in a child and not as an adult. While their input is valuable and they can be an excellent source of information, their experience pales in comparison with the men who actually have first hand knowledge.

What ever you do, keep your son away from Johns-Hopkins Medical Center. That is not the place to go for treatment of this condition.

Good luck on your quest and on the treatment for your son. Please keep us advised on what is happening with your son.

Frank

Thank you everyone for you thoughts and well wishes, this is an interesting time of my life! I really am not sure what we are going to do, I have however joined a couple of support forums and found some great pages for researching. A couple of weeks ago (before my first post) I was trying to find info on his condition and I came across a page about intersexed individuals and my sons particular diagnosis. I was devastated, this was not something the doctors ever told us. When we saw the doctor last monday he assured me that my ds was not intersexed, that his chromosomes are in fact male. But what do you do? there are pros and cons no matter what choice we make! Have the surgeries young so that he doesn't remember going through what must be a god-awful experience, but he might resent the fact that we made that decision for him. Or wait until he is old enough to make the decision himself, but have to go through puberty and other situations where he does not look like any other of his friends or his father. And then go through what is probably agonizing pain, which may turn out results that are less than favorable. I don't know what to do anymore! I have a 7 year old daughter that was also born with a birth defect and became deathly ill in the hospital at 2 weeks of age, which left her severely brain damaged and visually impaired. She is developmentally around 1 1/2 years old, practically like a baby. And now I have my son who is mentally intact, but physically not. I just really want to cry! No matter what we decide to do my biggest worry is how to teach him that all of it doesn't matter and it doesn't make him who he is. Any thoughts on the best way to teach a child that? Here is a picture of them.
http://www.babyhawk.com/images/kaylitalen1.jpg

Oh, mama, both your babies are beautiful. I don't have any brilliant insight or advice beyond love them as much as you can, for who they are on the inside and the outside....that will give them the security they need to thrive.

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From what I understand from what you have written, there will most likely be several surgeries spread out over years, so not remembering one is not a significant advantage. The advantage of doing it later is that your son will be able to communicate the level of pain to you and the doctor will be able to provide pain medications that should make the pain insignificant. This will not be the case with an infant and medications of sufficient strength may be too dangerous for an infant.

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I understand that frustration completely. You are frustrated because the doctor is rushing you and you don't yet have enough understanding of the defect or the surgery to make an informed decision. The doctor is not helping with this. You need to study and discuss and research until one day, the answer will become clear. You will become much more confused and uncertain as you study but one day, you will "go over the hump" and all of the bits and pieces will start falling togther and the answer will become evident.

It's like assembling a jigsaw puzzle with many pieces. As you begin, it will look like a jumbled mess and you will struggle to find a place for each piece. As you near completion, you begin to get an idea of what the picture is and the pieces start almost falling into place by themselves. It will be the same way with this. Right now, it looks like a jumble of information coming from all kinds of places and you can't see the picture yet. Keep assembling those pieces and eventually, a picture will start to emerge and your best approach will start to show itself. Then the bits of information will start falling in place and the picture will be completed.

At times, it will seem that you will never get there and it will become very frustrating. Just keep working through this and you will become an expert on this. You will then have the whole picture in all of it's detail. The answers will be self evident. Don't let anyone rush you!

Frank

Here is a Q & A from Mothering's main page by Marilyn Milos I thought you might find useful. I would definitely contact both her and Dr. Fleiss as you proceed with your research and opinion gathering.

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You must be one heck of a Mom.

First, I have to give you lots of credit for doing the research on this! I'm singing your praises right now, because for so long parents just went with the doctors' recommendations and accepted the outcome as inevitable. I'm happy that you've found the support networks as well, there should be a lot more information there than with your child's doctors (and how sad is that).

Here are my 2¢ as an intersexed person, though:
1) Doctors are nice people with the best intentions, but their view is narrow and ill-informed when it comes to gender and sex conditions. John Money (great name, eh) from Johns Hopkins was the most influential researcher on the subject of gender and children, unfortunately, he purposefully skewed his data to conform to his hypothesis that children's gender identity is based on the roles impressed upon them from their environment. Though his work has been exposed as fraudulent and harmful, it is still taught to student doctors today. For brevity's sake, please look his name up on Google, you're sure to have a few years' worth of reading.

2) Take those years of reading as a reprieve from subjecting your child to unnecessary surgeries. If your child is not physically disabled because of his condition (no problems with pain, urination, defecation, and the like), there is little cause for immediate action. In truth, early surgery can create those problems by damaging the small and immature tissues leading to lack of sensation and in some cases pain and lack of bladder control due to tissue and nerve damage. Your support group may be able to lend more examples to you of the specific problems faced by intersexed people who underwent "corrective surgery" whilst infants.

3) Chromosomes are not necessarily indicators of an intersexed condition. Chemical, hormonal, and individual gene expression influences also have a role to play in the making of an intersexed person. Chromosomally, I am a male, yet I have a period and have sired a child and identify as female. Your doctor is either ill-informed or tying to force your hand, both being his own fault.

4) There is the chance that your son may not identify as a boy, and if this is the case, then the surgeries you had performed to spare him any psychological hurt will only serve to compound it. Waiting until your child's innate gender identity expresses itself before making a decision on which surgeries to have will spare more pain than it would cause.

I apologise if this scares you, it's not meant to. I was born intersexed, my parents raised me to be a boy, and the steps they took to ensure the gender imprinting really hurt me but I recognise that they did what they thought was best. The true problem is not with the doctors, nor with you nor your child. Our failing is as a society where people born with an apparent sex variation are viewed as either incomplete or invalid. 1 in 2,000 or so births results in an intersex condition of some sort. 1 in every 200 births displays a variation in genital formation. This is a relatively common condition, and yet people are uninformed and unprepared for the possibility that their child may be somewhere outside the "norm." There is no place made for these thousands of people (millions worldwide) when all we are presented with is the unrealistic idea that there are only two eventualities: male and female.

Sex is defined as a physical representation of the male or female of a species as observed through primary and secondary sex characteristics; Gender is a component of one's self-identity and how it relates to a society's definitions of masculinity and femininity (not all societies view them the same way). Between the two polar opposites of Hyper-masculinity and Hyper-femininity lie most people. Within nearly everyone there is a blend of characteristics from both sides, and there are those who do not feel strongly one or the other and so are relatively neuter or androgynic.

As for gender identity, it is usually evident between 3 and 5 years of age, when the child begins to realise the social and physical differences between men and women. favourite toys and games are some indicators, mannerisms copied off of adults are another. For whatever reason, we tend to gravitate toward the social constructs of feminine or masculine in our manner. Of course, the parents can artificially push one or the other onto a child through reward and punishment. Just watch and listen to parents everywhere reprimand their little girls for being too boy-ish or vice-versa, especially vice-versa. Children aim to please, and the positive and particularly the negative responses children receive inform their self-expression. This is why it is important not to impose too much gender bias upon a child of possibly indeterminate sex.

I've heard the arguments that the child will feel ostracised or even that the child will not know love if they are not "corrected." This is all a crock. If a parent cannot love their child because the child's genitals are atypical, then the parent needs to be relieved of duty. I do admit that the child will probably feel uncomfortable being unclothed around others of the same gender, but how uncomfortable would the little boy feel in the company of girls were he not one?

This is a tough situation, and I feel deeply for your plight, but I feel more deeply for your child and what s/he will have to face in the coming years. happiness is dependent not on the shape of his/her genitals, but on the love you show him/her. I wish I had a more definite answer for you, but there is none yet. Your child is perfect, love him. I encourage you to wait until s/he is older and identifies him/herself as such before you take any medical action. Raise this child to be whomever s/he wants to be, just like any other child. There will be plenty of time for tossing the ball or playing with dollies or whatever classically gendered play you want later. Right now, you have an infant, and they're all pretty much the same.

Peace to you and your family, and above all advice, follow your heart.

~Melanie~

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Dear Melanie,
Thanks for sharing your story. I just have one tiny question-----do you mean that you gave birth to a child, or that you impregnated a woman? Because the word "sired" means "fathered."

http://dictionary.reference.com/search?q=sired

PS. Please forgive my ignorance. Maybe you really do mean "sired," as in "fathered." But given the rest of that phrase......periods, identify as female, I was confused about the "sired" part. But maybe that's just part of what I don't understand about intersexuality.

Hi,
I wanted to post although it's a while since you first posted. I have a 3 1/2 year old with coronal hypospadias and am also the vice-president of the Hypospadias and Epispadias Association. The website is www.heainfo.org . Hypospadias is really a complex issue that needs a lot of care when addressing it. It sounds as if your son is male. There is a difference between intersex and a boy with severe hypospadias although the reason your son developed hypospadias could be because he does not recieve the male hormones the way a typical boy does and those hormones also make a child feel or behave more masculine or he may have developed the hypo from environmental or other genetic reasons.
The reason surgery is recommended at a younger age is because the body heals much better and there are less complications. Unlike a circumcision,pain is managed well. When a male is older they get more and larger erections and surgeries can come undone or have more problems because of that.
The most impotant thing is that you find a very experienced surgeon. Severe hypospadias is a very complicated surgery. Where are you located?
Most people I know have their sons' severe hypo corrected although I have a friend who has not and could put you in contact with her if you want. Since our son wouldn't have functional problems and would just have to aim a bit higher to pee, we decided against surgery although most surgeons think all hypo needs correcting.
I wrote in to Mothering asking them to do a story on hypospadias but they don't think it's common enough. I tend to disagree.It is the most common birth defect in boys and occurs in every 125 male births. Most of these parents aren't getting the information they need to raise emotionally healthy boys.
Please contact me if you need help with anything.

The definition is correct. I am the "father" of our child though I am not 100% male.

Physically, I am a mix of the sexes, my genitals bear signs of possible surgery, but I have no memory of them, otherwise they are configured as male currently. I have small breasts, wide hips, and facial hair with a pronounced brow. I don't actually look strange or misshapen, more androgyne. I identify, and always have, as female but my current legal status is male.

Some people's gonads are undifferentiated or poorly differentiated, sometimes referred to as ovatestes, or one may have developed as an ovary, the other as a testicle. Not having had a biopsy (OUCH!) yet, I'm not sure how mine are configured, but I produce moderate amounts of estrogen and testosterone, and *very* few sperm, as in only a couple of hundred per ejaculate, and not all of them are correctly formed or moving.

I have also had a monthly and regular menses. The MRI I had done showed some odd configurations in my pelvis - mal-formed tissues between the urethra and rectum and underneath the bladder. Again, without a biopsy, the nature of the tissue isn't known. My mother claims she doesn't remember anything about what the doctors may have said after my birth (though she can remember the name of the woman and her child in the next bed), and my father didn't do hospitals. The hospital's records are all destroyed after 10 years as part of its policies, and my birth doctor (Dr. Polite - what a great name!) has passed some time ago. I sometimes wish I had more to go on so that I could be ready with a definite "this is what happened to me" explanation when people question me. I probably could go through a battery of tests, but would rather have insurance pay for some of it - they do not cover "transgender" tests, medication, or anything related to conditions that are not documented birth defects. So without documentation, I'm left to prove it myself.

I hope this clears some of your confusion up, I'm still trying to uncover the whole truth, myself. With so many people born this way, you'd think that the issue would be more public. It's more common than Downs Syndrome, but virtually uncovered in any parenting classes, books, or web sites. Let me know if you have any more questions.

~Melanie~