Hypospadias - help!

[ashleybess]

Our son was born with mild hypospadias (a condition where the urethral opening is located slightly on the underside of the glans instead of at the tip). He was born a month prematurely, and we had to eschew our birth center plans to go to a major hospital, which was a horrible experience, but that's another story... he was in the NICU for eleven days. When we were discharged, the doctor said that although his hypospadias was mild, we should get it corrected, and she referred us to a urologist, with whom we have an appointment in a few months.

I hate the idea of my son having genital surgery! I can't believe now that I ever considered circumcision - my husband and I assumed we would do it at first because, well, we thought that's just 'what you do' until I began researching and realized how totally unnecessary and potentially harmful it was. But now I'm devastated that it appears he will have to have genital surgery anyway, and perhaps a partial circumcision - I'm not totally clear on how the surgery is performed, but apparently part of the foreskin is used to correct the hypospadias.

Does anyone here have experience with this? Is leaving it alone an option? I feel like this is a lose-lose situation - I feel the genital surgery will be traumatic and i fear it will have a lasting imprint on him, but on the other hand, I don't want the hypospadias to cause him problems, social, sexual, or physical, later on in life. Any advice or just sharing of experiences would be much appreciated.

[glongley]

The Hypospadias Epispadias Association website has a FAQ for parents that includes info on surgery. http://www.heainfo.org/FAQ-ForParents.html

This is from the section on "SHould I have surgical correction for my son?"

"In cases of mild hypospadias, corrective surgery may be more for cosmetic purposes whereas in severe cases with chordee, surgery may be required to prevent painful erections. If your primary motivation is to improve the cosmetic appearance of your son’s penis, be aware that no surgery is perfect and your son will most likely still be aware that he is “different” as he grows up, so it will always be necessary to talk to your son about his condition."


Here is a recent journal article on outcomes of men with hypospadias that was not surgically repaired. ABout 2/5 of the men in the study had mild hypospadias, like your son's, but the rest had more severe forms. The results are very reassuring - the overall conclusion was that "Of the adults we surveyed with hypospadias, most stated that they were satisfied with the appearance of the penis, voided in the standing position, and did not have infertility associated with the abnormal position of the urethral meatus."

For the full citation and abstract see:

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=2

I believe there are foreskin-conserving surgeries for hypospadias repair, but I do not have the references on that. Perhaps others can post information on this.

Congratulations on your new baby, and good for you for recognizing the value of leaving your son intact, and for researching your options. There is no rush in any case, so please keep looking for info so you can advocate for your son, and feel good about whatever you decide to do.

Gillian

[BlessedMommy2006]

If it's not affecting his function in any way, then you absolutely do not have to do anything. If the function isn't being affected, then doing a reconstructive surgery is purely cosmetic.

If he decides when he reaches puberty or adulthood that he wants surgery, then it will be his decision and it will also be easier to do accurate surgery, when the penis is fully developed.

[Bm31]

I would definitely take a wait and see approach and not rush into anything as long as your son can urinate fine. I basically have the same condition and you just learn to adjust how you urinate (which I'm guessing can vary from guy to guy anyways). The difference is mine got that way medically; it was moved there to correct meatal stenosis (circ complication!). I guess I have to wonder if it was ok to move mine to the underside to correct a circ complication, why i$ there such a big concern to move a "mild" condition back to the "optimal" position?? I function ok, just learned to aim a little differently. I would be very leery of the benefits of any surgical interference.

[ashleybess]

Thank you for the information! I do want to avoid surgery if at all possible, and certainly cosmetic surgery! I suppose we'll wait and see what this urologist says, and if he insists that correction is necessary, then we might seek other doctors' opinions, and certainly seek out the foreskin-saving surgery option if it does seem truly necessary. His foreskin is a little hooded because of the hypospadias - would this affect function at all? He's very talented at spraying me and his daddy when we change him or give him a bath, and if that's any indication, there seems to be no impairment of his stream! It seems to be part of the argument for correction that there's no way of knowing how it could affect him as he ages, but his urination now is totally fine, and he doesn't have chordee.

Bm31, if you don't mind me asking, I assume there is no interference with sexual function?

[Quirky]

There's absolutely no need to do anything soon. It's not true that surgery is less traumatic for babies -- we have this backwards idea that everything should be done before they can speak and form memories, but there's good evidence that babies may not be able to articulate traumatic experiences as memories later, but these experiences still affect them.

Waiting until your baby is older, bigger, and stronger means better pain relief during and after surgery. It also means the penis is bigger and there's more to work with, and you can see how things change as his body gets bigger.

I personally think that involving the boy in discussions about how his penis will look and function is very important. One of the things I object to most is that parents circ their babies without any regard whatsoever for the fact that it's the baby's body and the baby's choice. Assuming that your son's hypospadias isn't so severe that it will affect him much until he's an adult, then there's no downside to waiting until he can have a say in whether and how to get it corrected.

The whole "but he won't be able to pee standing up" thing is totally overblown IMO. I make both my intact ds and my circed dh pee sitting down at home because unless you have a urinal to pee in, peeing standing up at a regular toilet can be very messy and gross no matter what your foreskin status! And in public bathrooms, there's nothing wrong with going in a stall to pee in private.

It also may be difficult to find a urologist who understands that the foreskin isn't just a source of tissue for a graft but an incredibly important part of the penis in its own right. Many US urologists are not up on the kinds of hypospadias repairs done in Europe, that focus on preserving the foreskin for both functional and esthetic reasons.

If you scroll down on this page there are a lot of helpful cites of medical journal articles as well as links:

http://www.cirp.org/library/restoration/

You've got plenty of time, don't rush into anything! And congratulations on your baby boy!

[Bm31]

Originally Posted by ashleybess

Bm31, if you don't mind me asking, I assume there is no interference with sexual function?

No, I don't mind at all. I have myriad circ complications from two botched circ's as an infant/child that do affect sexual function, but I would have to say not having the meatus perfectly centered on top is the one I least consider a problem. I suppose someone might say there could be a slight reduction in fertility because of a less than perfect aim, but I'd guess for a lot of guys that wouldn't necessarily be a bad thing, lol. I'd say the worst thing you can do for your son as far as future sexual functioning is to allow unnecessary cutting on the genitals. Hacking around down there may not always be horribly detrimental, but it surely will never do anything to enhance sensation, etc.

Good luck to you and your son!

[eepster]

Originally Posted by ashleybess

He's very talented at spraying me and his daddy when we change him or give him a bath, and if that's any indication, there seems to be no impairment of his stream!

This is a good indication that it is pretty mild, in severe cases, the pee would come out much further up the shaft and simply pool underneath him.

I would get at least 3 opinions before agreeing to the surgery, since it is only rarely necessary, but often recommended. My mother always said that Drs like their treatments, an will always go for them.

It's also extremely important to look over anything you sign several times, and be extremely clear that he is not to be circ'd. A few years ago a mother came here after her DS with hypospadia was circumcised while he was supposed to be being cordee. As horrifying as circ usually is, it was worse in this case since it made the hypospadia more visible, and meant he no longer had the foreskin to use if he wanted to have the hypospadia repaired as an adult.

[Kathryn]

One of my ds's has mild hypospadius and we got the 'you may need to have him circumcised' comments, but from our midwife. I looked him over and knew it was mild enough that it wasn't a big deal. He's 3 now and can pee just fine, doesn't have any issues at all. If he wants to get it fixed when he's older, he can choose to do that. I don't feel it's my choice.

[Ron_Low]

Originally Posted by glongley

The Hypospadias Epispadias Association website has a FAQ for parents that includes info on surgery. http://www.heainfo.org/FAQ-ForParents.html

This is from the section on "SHould I have surgical correction for my son?"

. . . "Of the adults we surveyed with hypospadias, most stated that they were satisfied with the appearance of the penis, voided in the standing position, . . . . "

For the full citation and abstract see:

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=2

There is no indication whether these happy campers were mostly intact or fully cut to effect the repair.

I think the whole idea of peeing standing up is WAY over-rated. I sit whenever I can. It's cleaner (less splatter).

If he has a foreskin and the urine is discharging within it, he can direct the flow of urine with his "nozzle." Removing it (creating the problem of not being able to direct urine) to let him point and shoot is silly.

And HOW DOES mild hypospadias even get diagnosed if doctors are following AAP guidelines and leaving the foreskin alone?

[Kathryn]

Ron, in many many cases of mild hypospadias (my sons included and it sounds like the op's son as well), the foreskin is 'hooded'. The top of the foreskin is there, but the bottom, from the bottom of the glans (sometimes further down) and up, was not fully formed. It's usually not attached to the glans like it is supposed to be and it doesn't have the sphincter on the tip like normal either. Usually, the glans is split as well, from where the urethra should be to where it is.
Therefore, you can tell even if the Dr's don't touch it. A Dr wasn't even the one who pointed it out to me, it was my midwives. They only noticed because he was born breech and it was pretty darn obvious that his foreskin and penis weren't fully formed, as he being born. No one has ever retracted his foreskin (not that it would matter, it's not attached at all like a typical child's would be) and you can tell just by looking at him.

As for using the foreskin as a nozzle, that's not possible because of the non-correctly formed foreskin. So the intact or not status really is irrelevant for the purposes of the study. That was from non-corrected men though, so I would assume many of them were intact.

[ashleybess]

Kathryn, what you're describing sounds a lot like our son... the foreskin is hooded and the little slit runs down the underside of the glans. The pediatrician did seem to pull back the foreskin a bit while looking at it - I didn't say anything at the time, but I thought you weren't supposed to retract a baby's foreskin...?
I had an atrocious birth experience in a hospital and he was not placed on my chest but instead whisked away immediately after I pushed him out, so I'm not sure how the nurses inspected him then...

When you say that his penis was not 'fully formed', what exactly do you mean? I thought that the hypospadias was only about the urethral opening, and that his penis is / will be normal in terms of development and size. If we leave him intact as we very much want to, will his foreskin function normally, or will the 'hoodedness' be a problem?

[Kathryn]

As long as the foreskin isn't attached like normal, which is likely is not, then it doesn't matter that he retracted to look. It's not like normal retraction, since the foreskin isn't adhered and there's no sphincter to tear. But, no, you're not supposed to retract typical infants/children.

What I meant by fully formed was just the slit, that's all.
The hood shouldn't be an issue at all. My son can retract his fully (and has been able to since he got his hands on it. ) and when retracted, minus the slit, he looks typical.

[thixle]

After I read this earlier, I found some great pictures of penis variations

I was thinking in terms of the female genitalia revolution- you know, be accepting of your vulva and how you look. Genitals come in so many varieties and none look exactly the same. It holds true for men, too.

I was actually looking for a medical chart of hypo severity. When I ran across a site that is basically photos of penii. The site is not "pornographic" exactly, but is a collection of close-ups. It's not a medical site, and you wouldn't want to accidentally click if your kids are in the room, but feel free to pm me and I'll give you the link.

I think it's worth a look at all the variations men are very, very proud of We don't see genitals very often, and people have been told recently to embrace the beauty of the vulva. Well, I think the penis deserves the same respect. The site has a couple pics of severe hypo, and while I can tell because I'm looking for it, I doubt any of his partners ever noticed. And really, it would get no more attention than seeing any other genitals for the first time... ((the slight hood will not be a problem for sexual relations. I frequent a board where this topic comes up, and never heard either partner complain about a hood-- it's much less of a problem than scar tissue))

I will be back later