hypospadias and mild cordee

[marija]

My son is 8 months old and our pediatrician told us that he has hypospadias (the opening is where the glans and shaft meet) and mild cordee. We knew this when he was born. He has the hooded foreskin.
Our pediatrician is suggesting that we have the surgery before our son is 2. She says that if we wait longer he will remember it and will have psychological problems later on or may have problems with gender identity?!?
We have been referred to a pediatric urologist who is supposed to be very good at repairing the above conditions. However, I am not sure if I want my son to have the suregery, unless it is truly necessary, especiallly when he is so young.
Does anyone know if surgery is necessary when there is hypospadias and a mild cordee?
We had been postponing the appointment with urologist because I was afraid that the sooner we saw him the sooner we were going to be talked into surgery. After rescheduling 3 or 4 times we are finally going to see him this Friday.
Any suggestions on what to ask the urologist? I have so many questions written down but I am afraid I may leave out something important.
Is there any info on what is the best age (psychologically and physically) to have this type of surgery and why?
I am concerened about the risks of anesthesia and surgery itself on an infant, however I have read some research paper abstract on PubMed that the tissue heals better and there is less scarring if the surgery is done before the age of 3.
And then, there is so much conflicting information on the psychological impact that is associated with the sugery that I am very confused.

[Quirky]

Welcome to MDC! I am sorry you are facing such a stressful situation. Whatever the doc says, though, remember YOU are the parent, you make the decisions, and you are in charge of your son's healthcare. Even if healing does go better when young, you still have plenty of time to do your research and make your decisions.

Here are some threads that might be helpful:

http://www.mothering.com/discussions...ht=hypospadias

http://www.mothering.com/discussions...ht=hypospadias

Here is a Yahoo group that might be helpful:

http://health.groups.yahoo.com/group/hypospadias/

p.s. From re-reading your post, I would be tempted to ditch the doctor who is giving you the heavy-handed pressure of "your child will have psychological and gender-identity problems." Your child's condition sounds mild, not something that is likely to create huge gender identity issues, and this doctor sounds like he's operating out of a very old-school mentality.

[Frankly Speaking]

I'll agree with forgetting about psychological and gender identity problems. That is simply a scare tactic so that the doctor can get his money now. Same with rushing you to get it done young. If you do decide on the surgery, the scarring will be minimal and will be hidden in the ventral raphe area where it will not be noticeable.

There is a link in the other threads that does not include circumcision. Since he has a hooded foreskin, circumicison may not be an issue but reconstructive surgery can often fashion a complete foreskin so that your son can enjoy his full sexual function. This is something to dig deeply into and thoroughly research. Do not take a doctor's statement that the foreskin can not be repaired or reconstructed at face value. Make sure you are absolutely positive. Old school doctors will tell you that the foreskin must be forfeited to provide donor tissue for the hypospadius repair. This is absolutely not true and a circumcision in conjunction with the hypospadius repair will just make a much larger wound for your son to have to heal from.

Take your time and research it thoroughly. There is no rush for the surgery. From your description, you may decide that it is not necessary or preferable at all. Certainly, there is no rush to get it done before a certain age limit. When you get to the point that you don't have to ask the doctor more than 2 or 3 questions, you will know you are adequately prepared.




Frank

[alegna]

As long as your son has no problems peeing I would wait until he is old enough to decide if he wants the surgery at all.



-Angela

[claud]

Hi,
My 3 1/2 year old son has coronal hypospadias (where the glans and shaft meet) as well with mild chordee. We have had 4 different opinions and have cancelled surgery 3 times. We decided that surgery was more of a cosmetic issue and since hypospadias surgery is very complicated,(although no surgeon will let you know that), we would not have the surgery. It was the hardest thing we've ever had to go through. I've attended the last 3 Hypospadias and Epispadias Association conferences and they have really helped me have confidence in raising a son with genital difference. You've probably been on the HEA website but if not the address is www.heainfo.org . There are chats, forums and other resources. I am on the board of directors and we are working hard at getting information out to those affected by hypospadias and epispadias.
I believe you need to see at least a couple of surgeons and come armed with questions and knowledge so that when the surgeon says things like "we'll schedule surgery at this time" you can say "so he has chordee, what is the degree of bend?" and "would surgery be done for cosmetic or functional reasons?" Each family has different reasons for chosing surgery just as each boy is different. If the chordee is severe, there could be pain with erections and that would be a reason to have surgery. I have asked a top surgeon in the field of hypo repair what is an acceptable degree of chordee would be and he said 10-20 degrees should be left and not corrected. Some boys might have what seems to be a mild hypo but the chordee is quite severe. When being corrected the hypo also is more severe because once the chordee is released, the urinary hole moves further down the penis. If you could imagine when you bend your finger a bit and think of the urinary tract running on the under side. If it starts out right below the head, as you straighten it, the hole would move down the shaft. If the chordee is mild, there probably won't be pain with erections or intercourse but a regular pediatrician won't be able to tell you that. You need to see a highly experienced pediatric urologist who only works on children. I would ask the surgeon how many repairs he does a year. If he says something like 20, run. The top surgeons in the country are doing over a hundred a year.
You can pm me if you have any other questions as I know how stressful this is especially when you first are dealing with all the options and translating all the hypsospadias terms.
It's great that you're doing your homework before jumping into surgery.

[Trishy]

Hi Marija,

My ds1 has mild hypospadias. The urologist found it when we went because ds1 was having a lot of UTIs. We had to travel 1 1/2 hours to see him and I had never heard of hypospadias before. Ds1 also had a inguinal hernia and needed to have a VCUG for the UTIs. I went ahead and scheduled the surgery, since we had travelled so far and I intended to have the hernia repaired and the VCUG. I came home and researched for hours. I talked to my dh and my parents and shared what I had learned. In the end the decision was mine to make and in my heart I felt that ds1 did not need the surgery to function properly. When he is older he can decide if he would like to have it done.

[marija]

Just want to thank everyone who has responded to my post!!!! Thanks for the links, opinions, and shared experiences!

I am so gald I found MDC! I feel am not alone in dealing with my problems and people seem to be so sincere, supportive, and helpful. I came to MDC first before joining any other support group for hypospadias because I wanted to hear from other people who had a bit less mainstream philosophies than the "fix it if it does not look right" and "fix it before they know it" attitude. And I feel I came to the right place!

Thanks again, everyone!

[marija]

Hello, Diaper Lady!

I was just wondering if you had your ds1's inguinal hernia repaired and if you were able to find out the cause of his frequent UTI's?

[PuppyFluffer]

Marija,

Welcome!

I am glad you are getting such helpful information here. This really is a wonderful community!

Best wishes to your and your son.

[jessjgh1]

bumping up, Sorry to be brief, we are all sick and I'm miserable)-:
I'm referring another parent with a similar problem and I want this to be on the first page

Jessica

[LeslieB]

Just caught this thread. Thanks for the info. My son also has Hypospadias and a mild chordee. He's only 10 weeks, though, so he is going back for another evaluation in October. I also don't want to do the surgery if it is only for cosmetic reasons. I would do it, if the chordee becomes so much that it could cause him pain during erections in the future. I will look at more of the information you have posted. Thanks!