Stories of Parents of Children with Hypospadias or Epispadias

Happy at Six Months

My son had hypospadias with chordee repair recently at six months of age.  I was a little scared, anxious, and worried with the realization of a potential three hour long surgery on such a young infant. However, I am so happy that we decided to have the surgery done at six months versus 8-9 months of age. If was crawling or scooting himself around it would have been so painful! So, anyone who is contemplating the age to best repair the hypospadias--I would definitely go ahead at six months old!  He is currently healing well and happy!

Name Withheld

Our Son Looks Perfect

My son was born with a hypospadias. When the pediatrician that examined him the morning after his birth told me, she briefly explained what it was and said, "But don't worry. After surgery he'll have a beautiful penis!" (My husband was not there -- he had gone home to get some well-deserved sleep.)

When he was three months old, we took my son to see a pediatric urologist, who I did not like. He had no bedside manner, which led me to have no confidence in him. My husband has been in the health care industry for quite some time. He asked around and the guy had a good reputation. However, we moved a few months later and prepared ourselves for finding another doctor.

We both work for a hospital system with its own health plan. There is not a pediatric urologist on staff, but there is one urologist who handles all the hypospadias corrections. Regardless, we requested that our son be referred to a pediatric urologist, but our request was denied. Off we went to see the guy on staff...

The doctor was confident that he could correct our son's level 1 hypospadias, so when our son turned 11 months old, he had the surgery.

I couldn't believe my eyes when I removed his diaper for the first time! Everything was black and blue! And because we had to double-diaper a squirmy little boy, I lined up people to come and help me that week he was recovering.  (Just to have someone entertain him while I changed him.) As the week wore on, everything started to look much better. After eight days, the catheter was removed with no complications.

On his follow-up visit this April, the doctor told us that the surgery was so successful, we would not even have to tell him he had a hypospadias -- that he looks no different than other boys. My husband and I were, quite frankly, relieved. We will make that decision as he gets older. Our concern is that he NOT grow up with the stigma that he is different from other boys.

I must admit -- I read a lot of horror stories about corrections gone bad and was very worried. However, this guy did a wonderful job -- and our son looks perfect!

Shannon

Congenital Adrenal Hypospadias

In November of 2004, I was expected to a have a healthy baby girl. My husband and I bought everything pink and fluffy. When I gave birth, I had a beautiful baby. We weren't 100% sure of the sex so we had internal sonograms and chromosome testing done to determine the sex.  Sure enough, we had us a boy!! 100% male! We took him to a specialist here in the U.S. and they diagnosed him with Congenitial Adrenal Hypospadias. It was something I had never heard of before. I thought I had done something wrong. My baby, Braden, is due to have his first surgery the day after his first birthday. It will be lower his scrotum and to correct his chordee.  He has one of the more severe cases of Hypo  I've learned a little more about his condition and still have yet to talk with anyone who knows about this. None of my family nor my friends have ever heard of such a thing. The doctors say my baby will look normal, like a circumcised young boy. They say he will only be able to function normally with the surgery. I am just trying to learn as much as I can.

Tammy

Glad Postponed Surgery Until Son Was Older

My son was diagnosed with severe penoscrotal hypospadias with chordee at birth. He was never able to stand to void; he had to sit down. All the doctors told me it would be better for him to have the surgery at a young age before he turned one. We saw three or four pediatric urologists before we found one we felt comfortable with. I was very scared and uneducated about the whole procedure and the outcomes. We actually had surgery set for several different times and I always backed out of them. Then one day my son came to me and said, "Mommy, why can't I stand and pee like daddy?" It broke my heart and I explained to him and asked him if he wanted to have the surgery. I explained to him that it would hurt of a little while, but the doctor would give him medicine for the owie... So with his help we decided to do the surgery. My son was five when he had the procedure done. The surgery took about 5 long, long hours. The first few hours after surgery were ok until it came time for him to go potty for the first time. They wouldn't let him leave the hospital till he went, and it took hours before he would go.. He had to go so bad and he would start to go a little bit and then would just freeze up and scream and cry; it was a horrible feeling and then I thought I made the wrong decision on the surgery but not for long. It took him about 6 hours till he finally went to the bathroom.. The first 5 times where very very painful for him but by the next day he was back to his normal self. The only time it would hurt was the first time going to the bathroom in the morning. His surgery was only about four months ago so we really don't know the outcome yet, but his urologist says it looks great and he is optimistic about having to have anymore surgeries. One thing though is it took my son about three months to even try going to the bathroom standing up.. He was afraid to.... He thought if he went potty standing up that if he wanted to ever go sitting down again he would have to have another surgery... About the right time to do surgery is when you feel ready to, don't let nobody pressure you into it if it don't feel right.... I am glad I waited to do my son's when he was older... He at least can understand a little better what was going on and what was going to happen. For who ever reads this I want to say Good Luck and God Bless you and your children.. Children are so fragile please be kind to them....

Carrie

Healthy Little Boy with No Physical Signs of His Condition

Hi my name is Rebecca and my son's name is Will. Will was born with severe hypospadias. At birth the doctors could not tell a gender because of the placement of the urethra and the undescended testicles. X-rays confirmed that he had no girl parts but we still had to wait for the chromosome test to come back. This was an awful experience for a new mom who was sick for 9 months of her pregnancy. The day after Will's birth we saw a pediatric Urologist. He confirmed hypospadias and told us about the surgery options. We decided to start surgery as soon as possible. We did not want Will to have any memories of this as it was very traumatic.  We will of course tell him about it, but we did not want him to remember any pain or trauma.  The first surgery was done about 9 months old and they straighten the penis, descended one testicle and laid the groundwork for the new urethra. The second surgery was when he was about 15 months old. During that surgery they rebuilt the new urethra to extend to the end of the penis, brought down the other testicle and fixed a hernia. All in all Will is a healthy little boy, with no physical signs of his condition. When he looks at himself he will not know that he ever had a problem and all he will know of it is what I tell him. I hope this give encouragement to all anticipating surgery that things can go well and we wish everyone well. Thank you.

Rebecca

Father and Son with Hypospadias

I have noted with interest the various tales told in this e group and elsewhere on the internet by people who have had some experience of hypospadias. The more I read, the happier I become because my parents had the wisdom to ignore the surgeons and do nothing about my hypospadias.

To be perfectly honest, they probably would have had something done if I had been born in the current era, as it always bothered them that they may have taken the wrong decision.  However, I am now 52 years old, and their decision was taken at the end of the Second World War when plastic surgery was in its infancy. Therefore, they probably had good advice that really, the risks far outweighed any cosmetic results they may have achieved. So I was saved the pain of the surgery, and scars and uncertain results.  I still have my hypospadias.  I eventually told my father (my mother died when I was 23) that I was very happy at what they hadn’t done, but what had hurt was that they told me absolutely nothing about it.

For the record I have a moderate hypospadias with the opening not far back from the base of the glans.And what do you know, it all works fairly well without any pain, strictures, scar tissue or misshapen erections. (If anyone wants further pictorial information, including a full erection for the record, please contact me direct). It’s not perfectly straight and it is sometimes hard to pee in a straight line and needs a lot of control but can be done. I got better at it as I got older and can control it fairly well so that I can pee with accuracy and without it spraying everywhere. I also have full sexual function and never had any problem with achieving fatherhood.Frankly I have even become somewhat fond of it. It is different after all!

I have two children, boy and girl, and they are both great kids, now 29 and 24 years old. A lady in an e-group devoted to hypospadias sufferers and their parents or partners, was amazed she could have two sons with hypospadias - a “one in a million chance” she said. My son also had a hypospadias. Although it is not strictly inherited, the chances are that, once one male in the family has it, about 1 in 14 of his direct male relations will also have it. Since the original condition has about a 1 in 300 rate in the male population, that makes the chances of two in the same family at about 1 in 4000 of male births, and since there are two births of them – that means one in 2000 chance of them both having it. Hardly the one in a million chance that unfortunate mother believed.  

I have checked my family tree and believe that it is likely that it has occurred in at least 5 other male relatives over 5 or 6 generations. Why? One person was named Charlotte at birth and mysteriously was to be married as Charles, but the marriage never happened. We have guessed that this was a severe hypospadias where he superficially looked female at birth, but became obviously male as his hormones kicked in at puberty, but then could not consummate his marriage, so it was not recorded. I also know of at least 4 other males who “never married” with little explanation. At least two of my close male relatives, brothers, also live together in seclusion never having married. My great great great great grandfather was also a foundling child (hence the funny name which we were told was made up). Was it possible that he also had a hypospadias and was rejected and abandoned by his mother in about 1780 when he was born? Maybe it is all speculation, but there is enough evidence to convince me of the 1 in 14 ratio when you count me and my son in as well.

And yes, to save my son some of the embarrassment I had as a kid growing up in school, we had his hypospadias corrected. Two operations were carried out at Gt Ormond St in London at the age of between 2 and 3, fortunately with no ill effects (he told me). I doubt that I would have done the same thing today, but at that time, I knew nothing of the risks and he has said he was glad we did it.  Fortunately, I think we went to the right place as the surgeons there were paediatric trained being the pre-eminent London children’s hospital. Still is.

When I look back on the problems I had as a child, they were absolutely nothing when thinking about the pain and suffering some kids go through for a correction - which has a failure rate above 10% for many of the procedures. I have corresponded with many of those affected by failures over the last few years, and for most of the tales I hear I cannot give any advice as they are already disasters. It amazes me the fortitude of some of them, with multiple operations having been performed with (it seems) often only worse and worse results.

I sometimes hear from adults from the Middle East or India who have not been able to have anything done as youngsters, but are now thinking about it before they get married. My advice to them is always the same. If you do not have any physical difficulty with the uncorrected penis, even if it is small and/or bent and causes you embarrassment, it is still probably not worth the risks associated with a correction. But I also emphasise that the decision is that of the owner of the penis, not mine or anyone else’s.

In other words, be aware of the risks and make your own decision based on knowledge not your feelings. If you have already reached adulthood, then the worst times for embarrassment are over. What you need is an open honest relationship with a partner where you explain to them exactly what you have before or as any serious relationship starts. Then it will not be a shock to that person when it is seen for the first time. In fact you can learn to enjoy the difference in exploring your capabilities together.

Now there will always be a proportion of women who will then run away from you too embarrassed to discuss it. That’s their problem not yours. It is better to find that out before you commit to a marriage with the embarrassment deferred to the wedding night. I told my future wife about it very early in our relationship (after about 4 weeks) and although she was mildly interested, it made no difference to our relationship and we have been married for over thirty years. This was made a little easier for me because she was also a nurse and understood what it was all about. She also now says that I am obsessed with it as she is so used to it, she cannot understand that it might still be an issue with me, if only in discussing it on the internet as I have been doing for about 4 or 5 years.

When living apart from my wife for a few years (mainly as a job I had kept us 600km apart for 3 years), I also had a second relationship with another woman who absolutely adored it and we couldn’t get enough sex. I actually needed that relationship if only to prove to myself that the hyposopadias was not an issue for me. Indeed, it seems that the very shape of the glans being wider than normal is good for a lover as it increases her pleasure. That is a positive we can tell our sons to look forward to, something they have that no one else can. You can learn to love your difference.

For adults who are thinking about getting a correction because they have been too embarrassed to approach women for marriage or sex, or even to have as a girl friend, I have in the past suggested that they rather find out about their sexual capabilities before deciding on a correction. Often the difficulties they are afraid of are more imagined than real, and should not be a reason for surgery, except possibly in the most extreme cases of chordee where the bend is so great as to make penetration either impossible or very painful.  

To find out about their capabilities or possible problems, this can be by an honest approach to the prospective girlfriend or wife to trial sex (not impossible in our more enlightened age) or if that is just not possible, even by paying for sex. This allows them to find out about their own limitations before having to discuss it with a girl friend or there being irreconcilable problems in marriage. Again, this is for each person to decide for himself based on his own personal circumstances and beliefs. It never occurred to me to go to a prostitute as a young adult, but I was lucky that I found someone understanding when I was 20, and it was then no longer an issue between us. For some of the young men I have talked to on the internet, many are coming up to 30 or older and are still virgins. They are too afraid of ridicule and have not tried to approach a woman for sex. They have not had any guidance as children or through puberty and so need psychological help much more than surgical.

I believe that living with a hypospadias need not be the end of the world that the doctors seem to think it will be, and it is a lot safer than their rather discredited operations. When I try to discus this with them, they cannot believe that anyone with hypospadias wouldn’t want to have their wonderful ops!!!  I cannot understand why they always recommend that youngsters have the corrections done so early. I was not aware of the difference until I was at least 8, so there really is no rush to make any decision, and by 8 you can also involve your son in any decision making, quite apart from the fact that the penis is bigger and easier to work on. But you do have to talk to your son about it from day one, in the same way that you will slowly introduce him to the facts of life as soon as he can handle them. I have never ever felt suicidal over my hypospadias, but I have spoken to some with butchered penises who have certainly felt that their life was ruined and have contemplated it.

Remember there is a risk with any op and a depressingly high failure rate is well known (at least 8%). From what I read, there is an even higher rate for what many have described to me as “problems” needing follow up surgery (eg fistulas, scarring etc), but may not actually be called “failures” by the doctors which they seem to reserve for complete breakdown of the repair. Sometimes the penis can become devitalised and be lost altogether. A very high price to pay and it has happened over things as simple as circumcisions (that was the reason John was surgically turned into Joan in the now descredited John and Joan case). Just remember how hard it is for someone with problems in this area, just to take it to a surgeon to ask for help or for further painful work on it. From what I read from others, quite often they have all the problems of the surgery and the original problem, a urinary meatus on the shaft of the penis, has not actually been fixed.

What a young boy with hypospadias needs is what I did not have. Information early on about what it is, and a connection to others with the condition, so that they do not think they are the only one. So when your sons are old enough to understand, encourage them to find out about it as much as possible and talk to others with the same condition. The internet is so useful to be able to do this impersonally. This will help them to get through the difficult times whether it is corrected or not. Then they can talk to an old bugger like me and learn that they can live with it. Only when they are old enough to understand the risks, should you and they together take decisions on whether they want to do anything about it or not. Don’t do it just to make little Johnny right to be able to show your friends. Whose penis is it anyway?

As I said before, I only started to realise I was different from the other boys at school at about 8. This was when a group of us tried to put out a small fire we had started using the only means of spraying water at our immediate disposal. I somehow managed to pee on the foot of my best friend, and everyone became a bit curious as to how it was that mine peed downwards when pointing horizontally. I could not tell them why it was like it was and the incident was soon forgotten by them as a mild oddity, and they had no further interest. However I was very confused as to why I was so different. I had grown up with my sister and I knew what SHE looked like. What was I? Was I some sort of hybrid?

It was noticed a few more times at my senior school as I grew up. We had a gym and indoor heated swimming pool at the ‘all boys’ English public school I went to. We were expected after gym to take a shower in the open communal shower (no privacy) and then plunge into the pool, still naked, to swim and cool down. Again it was noticed a few times (no more than two or three times) and generated some local interest and some finger pointing. At those times I would be embarrassed but simply go and dry off and put on my clothes. If my classmates discussed it any further they didn’t ask me about it.  It however never hurt me physically and I got on with the more important things in my life, probably becoming progressively more shy as time went on. On one occasion I was at the pool on my own with another much older boy and he came up behind me and took my penis out of my trunks. I didn’t know what to do and got an erection as he handled it. He asked me why it was like it was and I explained it was like that when I was born. After satisfying his curiosity, (he had probably noticed it from a distance previously or heard about it from others) he left me alone and I heard no more about it. That is the sum total of my embarrassing experiences over 12 years of school. Painful at the time, but certainly not enough to have justified any risks in correcting it surgically.

I also remember going to an agricultural show with my father at about 14 or so and the men’s toilet was a hessian screened off area with an open trough at ground level. I remember being embarrassed at having to pee into that with everyone else watching as I couldn’t get it to go in the right place, but I don’t know if anyone else actually noticed it or not. On the way out however, I noticed someone peeing into a corner and looked as I went past. I was amazed to see he (an adult) also had a penis that looked exactly like mine, except it was much bigger and fatter (possibly as he had a slight erection as well). By this time I was fairly obsessed with the idea that I was unique and used to take every opportunity to try to see others. I had seen many of my school friends in the showers, and some with strong erections showing off, but to my disappointment never saw anything like mine. So when I finally saw another one at the agricultural show, I was exultant as I knew at last that I was not the only one.

Finally, when I was 17, I found out from a biology text book in the school library that I was not only not unique, but had a well known condition. It was the first time I learned what it was called and that it was also fairly common (although I couldn’t pronounce the name). I think that was the point when I also started to live with it and stop worrying, which reached finality after I left school, went on to university and I lost my virginity at 20. I have also all my life been much more comfortable in the company of women and find it hard to make friends with men. I think this stems from both growing up with a sister and my uncomfortable days at my all boys school, where I withdrew from the bulk of my class mates and only trusted a very few of my closest friends with a close up view of my “secret”. I soon found women to be much less judgmental and therefore easier to get on with and I could trust them more.

The rest of my life has been totally uneventful as far as the hypospadias is concerned.  Although I would not have discussed it with anyone except my lovers (there have been one or two over the years) until a few years ago, I have subsequently discussed it over the internet with many people, and face to face with one or two good friends (all female of course). I never could discuss it with another man unless he already knew what it was. Even then I would start the conversation about my son having it first and wait till the penny drops that I know a lot about it because it has affected me too.

I have also learned that it can be caused by many different things and is not just something that my family or others pass on from time to time to the unlucky boy. I an environmental scientist and have become involved in the debate over endocrine disruptors which appear may be causing the increase in incidence of hypospadias amongst other things. Interestingly, from the CDC study, it is the frequency of the more severe forms of hypospadias that are increasing – not the milder forms like mine that are most probably hereditary.Therefore, it is imperative that we bring our debates further and further into the open, so that those who are unaware of the condition and the possible causes become familiar with it and our sons can avoid having surgery purely for cosmetic reasons as it will be seen just as one extreme of the natural range of variation. 

I remember talking to someone at a conference where hypospadias was mentioned as a result of endocrine disruption in the mother, that I and my son also had it. A woman listening to our conversation eventually asked me privately what it was. I explained and she rushed off in embarrassment, probably wishing she had never asked. But the incident left me totally unaffected and I felt sorry for her as she was someone working in the field and had obviously not realised that such things could occur. She needed the help in coming to terms with it, not me. The more people know about it, the more it will also not be an issue for our sons.

For those of you who are thinking about surgery, please pause awhile and think about involving your son(s)in any decisions. There is no hurry - it is not a life or death decision and take the old carpenters adage - measure twice and cut once.

If anyone wants to discuss this privately with me - send an email.

Cheers,

Ken

Mother of Boy with Hypospadias

Hi I am Ky and am the founder of the yahoo club Mums with hypospadias kids.

My son was born in 1992 with moderate hypospadias, back then I had no access to computers and didn't do any research into the topic, I was just told that it had to be fixed (and who was I to argue I'm not a doctor), boy if I only knew the things I know now. Don't get me wrong I would have still had it corrected but I would have had the power of knowledge at my side to fight inexperienced doctors.

My son was 7 months old when he was operated on, and all went well although at postop appointment a doctor stated to me "Oh! he has made a bit of a mess with that one" this was all that was ever said.

When my son was 2 years old I noticed that he looked like he only had one testicle, this had to be repaired by surgery, not one doctor had picked up on it before I noticed it.

 As my son grew I noticed that he was very embarrassed by the way his penis looked, mind you there was so much skin around the head of the penis it almost looked like a hammer, so I understood his embarrassment.

When my third son was born in 1999 he was born with an undescended testicle, so since I had to go to a specialist anyway I decided to take my first son along too and ask the doctors opinion. While she was having a look we found three fistulas, what were these holes from, I had no idea ( I have since learnt that fistulas are like blow outs in the uretha ), now it wasn't a question of whether to have him neatened up or not he had to have surgery anyway. Both sons were operated on the same day Feb 2000, what a horrible day that was.

My first sons catheter dropped out twice and was reinserted twice, at the postop appointment we found that one of the fistulas was still there and leaking, it was devastating to think that he had to be operated on yet again. It has been 5 months and we have recently discovered that the fistula has closed over, YEAH !!!!

I now have a club where I help other mothers learn through my experience and try and help them by offering support, knowledge and most importantly friendship.