Causes and Rates of Occurrence

The causes and rates of incidence of hypospadias have not yet been definitively defined by researchers. Past studies have been small and samples have not been representative of the general population. Official reporting on hypospadias has been spotty. The news media has tended to pick up these poorly-done studies and mis-state their conclusions while exaggerating their importance. That said, we’re pretty confident that the following information is correct.

Hypospadias can occur in generations of families in a classic hereditary pattern and also as isolated cases. Most hypospadias is isolated, so while it can be passed down, it is not necessary to have a relative with hypospadias for there to be a possibility it will occur. Estimates are that there is an 8% increased risk of hypospadias if the father is affected, and 12% increased risk if an older sibling is also hypospadic. Please note that this is NOT an 8 or 12 percent risk of hypospadias in any random birth. It is an estimate of the increase in the overall background risk of bearing a child with hypospadias.

Overall estimates of the rate of occurence of hypospadias range from 1 in 300, to 1 in 125 live births, and like any other human demographic, the numbers change by location, accuracy of record keeping, consistency in classification of the difference and so on. While there is some difference in rates by race, the differences are not statistically significant. Hypospadias occurs in all races and ethnicities. Some researchers have concluded that hypospadias is increasing. Others have not reached that conclusion, pointing to inconsistent reporting of hypospadias in the past, and natural fluctuations in annual statistics.

Some things we don’t know about hypospadias:

  • There is a lot of internet content on pesticides, pthalates, phytoestrogens, DES, prescription drugs, industrial pollution and so on, and the hypothetical effects on birth defects. While we do know that certain prescription drugs can cause hypospadias, the links between hypospadias and other substances in the environment have not been proven. At this time, there is no proven single cause for hypospadias, and since hypospadias is highly variable in form and occurence, it is likely that it is caused by multiple factors.

Hypospadias (HS), What Is It

Having been born with HS at a time before the internet, it was a condition that did not have a name in my case until I was in my twenties. Thinking it was just me with the condition, I never went to the reference library to research it and my parents, sibling, doctor, etc. never brought up the subject.

There are various forms of hypospadias from mild, where the meatus (outlet of the urethra where the urine and semen come out) is on the glans, through more severe where the opening is on the shaft of the penis, to quite severe where the opening can be between the scrotum and anus. All the variation may have chordee, which is a bend in the penis, and this may cause problems when the penis is erect so that sexual penetration may be difficult. With HS there may also be a hooded foreskin which covers half of the glans; this tissue may be used in any subsequent surgical procedure.

It may be that a severe case of HS needs some surgical procedure to try to improve the chordee and/or bring the meatus nearer the tip of the penis. There can be some failures in these procedures; strictures (a narrowing of the urethra) in the newly formed urethra or a fistula (an extra hole through which urine leaks out) in the scar line may present. Mild cases may be left as they are at birth since the functions of the penis are working well.

There is the psychological aspect to consider, however, since the male individual tends to be aware of his penis from an early age. Inevitably there will be comparisons made at school or in showering after sport and just how informed the individual was made at home may well help to cope with this situation. In other words, the young person should be aware that he is not alone in this HS business and need not be ashamed of his differently-shaped penis.

I would say that two or three young adults with HS have recently told me that they have made immediate friends with people at school, both male and female, who are aware of their HS. These people have been treated with respect and understanding. This is something I did not dare do as a young adult but just shows that knowledge, and the proper use of it, can be a great help in coming to terms with hypospadias.

by an HEA Member

Hypospadias: An Overview

Stated simply, hypospadias is a mislocation of the urinary opening, below the usual place on the tip of the penis in males, or when the bladder empties through the front vaginal wall in females. This is the end of the simple part, as hypospadias is one of the most variable of birth differences and is the most common birth difference in boys. The location of the opening can vary from just below the tip of the penis, to the most severe variety in which the bladder empties just forward of the rectum. Hypospadias occurs as a part of over 100 known genetic syndromes, and can be accompanied by other birth differences such as inguinal hernia and undecended testicles.

Chordee, a bending of the penis, is frequently a fundamental part of hypospadias, although it is possible for both conditions to occur without the other. Boys with hypospadias will often have a hooded foreskin, which is a foreskin that is incomplete on the bottom of the penis. Circumcision should not be performed on boys with hypospadias, as foreskin often provides tissue necessary for hypospadias repair surgery. It is still possible to perform hypospadias repair on a circumcised child, but it may be necessary to harvest grafts from less ideal locations if foreskin is not available. Some specialists can preserve or improve the appearance or function of the foreskin during hypospadias repair, if circumcision is not desired. Chordee is commonly repaired with hypospadias in single stage procedures, but more complicated cases may done in staged surgeries, with chordee repair being first.

Hypospadias is a term some specialists prefer to reserve to describe the male condition; in females, vesico-vaginal fistula (a passage from the bladder to the vagina) is the preferred diagnosis. In rare cases, this passage is the urethra. Diagnosis would depend on whether there is a normally located native urethra in addition to the fistula, the presence of which would exclude hypospadias. Girls with fistulae or hypospadias will urinate from the vagina, often with discomfort due to the irritating properties of urine. Children of both genders may have frequent or recurring urinary tract infections and in these cases follow-up investigation is often indicated to determine if urinary tract anomalies exist, or if reflux is present at the kidneys.

Hypospadias can occur in generations of families in a classic hereditary pattern and also as isolated cases. Most hypospadias is isolated, so while it can be passed down, it is not necessary to have a relative with hypospadias for there to be a possibility it will occur. Estimates are that there is an 8% increased risk of hypospadias if the father is affected, and 12% increased risk if an older sibling is also hypospadic. Please note that this is NOT an 8 or 12 percent risk of hypospadias in any random birth. It is an estimate of the increase in the overall background risk of bearing a child with hypospadias.

Overall estimates of the rate of occurence of hypospadias range from 1 in 300, to 1 in 125 live births, and like any other human demographic, the numbers change by location, accuracy of record keeping, consistency in classification of the difference and so on. While there is some difference in rates by race, the differences are not statistically significant. Hypospadias occurs in all races and ethnicities. Some researchers have concluded that hypospadias is increasing. Others have not reached that conclusion, pointing to inconsistent reporting of hypospadias in the past, and natural fluctuations in annual statistics.

Some things we don’t know about hypospadias:

  • There is a lot of internet content on pesticides, pthalates, phytoestrogens, DES, prescription drugs, industrial pollution and so on, and the hypothetical effects on birth defects. While we do know that certain prescription drugs can cause hypospadias, the links between hypospadias and other substances in the environment have not been proven. At this time, there is no proven single cause for hypospadias, and since hypospadias is highly variable in form and occurence, it is likely that it is caused by multiple factors.

Arthur: Douglas J

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.

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

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

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

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

Teen with Epispadias

I am 16 yrs old and I was born with epispadias. Growing up with the defect has been really hard for my family and me. You find yourself always trying to hide the facts. I have to wear pads because of my incontinence and I find it hard to do things normal kids do. I must always watch what I do. When I was 14 yrs old I told my best friend my condition and he was fine with it. He understood the problem. When I turned 15 I felt the courage to tell some more friends that were close. They didn’t take the news as well as my best friend. They ended up not talking to me and I was alone. It is very hard growing up and hiding the facts. School would probably be the hardest. Knowing that if you slipped on your words or news got out you wore pads or have epispadias just imagine what might happen. Sports are another issue. I can’t do crew or swim because I’m afraid of what others might think of me when they see me in a Speedo or tight pants. I know I can’t just run and jump in a pond if I wanted because I wear pads. So things are limited to us who have the problem. You find yourself have problems with doing stuff with friends. I currently have a girlfriend who doesn’t know. I don’t really know when the right time will be to tell. We all know high school things happen, I don’t want a sexual time to come up and her not knowing about my problem. So this is a word of advice to parents or kids who have it. Watch what you say and know who you say it too. Always have confidence in everything you do. So parents sit down and talk to your kids about their problem consult doctors.

Josh

Hard Life Challenge

I was born in northern Colorado back in 1980 with hypospadias and I had a surgery when I was about 1 year old. In my surgery they repositioned my urethra to the top left side of my penis from the bottom side. When I was little in about 3rd or 4th grade I remember a kid in school laughing at me after seeing me in the bathroom peeing out of the side of my penis. From that day on I new I was different from all the other kids. This has been a very psychologically hard to deal with problem while growing up and is still to this day. I have never really had any sort of sexual life due to the possibility of being rejected or turned down due to my condition. While growing up and watching friends get girlfriends, going on dates and eventually getting married and having family lives, I was living and still am living a very secluded life. I have been living with this for 28 years now and am still trying to get by day by day. After doing some research about this condition I have found that this is becoming a more common problem in newborns today. But even at that I have never in 28 years meet a single person with this condition. I would like to meet others with this condition and see how they have coped with this problem. I hope you post my story because this has been a really hard life challenge to deal with.

John