Although one in 150 boys is born with hypospadias, it receives little publicity. There are no public awareness campaigns or
hypospadias events. It is more common than many other congenital conditions, but most people have never heard of it. Why?
It's all about the penis.
"In the vast majority of cases, it's benign, but we get one case per day at least," says Dr. Joao Luiz Salle, pediatric urologist
at Toronto's Hospital for Sick Children, also known as SickKids. "Hypospadias is usually very isolated in that there are usually
no other complications present."
Hypospadias is a condition in which the hole at the end of the penis is not where it should be. Instead of ending at the tip
of the penis, the urethral opening is lower on the head of the penis or along the shaft of the penis. In more severe and rarer
cases, the urethral opening is located on the scrotum or at the perineum, the area between the scrotum and the anus. Additionally,
the foreskin does not usually completely wrap around the head of the penis and, occasionally, a curvature of the penis, called
a chordee, can be present.
The news, such that anyone is talking about hypospadias at all, is good; in the vast majority of cases, the condition is repairable,
leaving a functional and normal looking penis. And with the right support, any emotional distress is avoidable.
"In the past, people with milder cases didn't even know they had it," says Dr. Salle, noting that most hypospadias do not
affect sexual function. "It used to be that people had only one partner and hadn't seen other penises, whether live or images,
to compare with. Often they found out that something was amiss when their own sons were born looking different."
| Hypospadias |
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| Usually, the opening of the urethra, or meatus, is at the tip of the penis. In children with hypospadias the opening of the
urethra can be located at various positions along the underside of the penis. The foreskin may not completely close over the
head of the penis. The location of the urethral opening can range from just below the usual position on the glans to between
or underneath the scrotum.
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Hypospadias is a congenital defect, meaning that it occurs before birth. Although there is no definitive answer as to the
cause of the condition, it is more common in some ethnic groups, which would seem to indicate a genetic component, though
environmental factors are also believed to play a part. Dr. Salle says that all types of hypospadias are on the rise, though
it is not known exactly why. Many researchers believe that some of the apparent increase can be attributed to more complete
reporting, especially of milder cases.
These days, hypospadias can be repaired with one outpatient surgery. "Most hypospadias do not have the chordee and so the
operation is done mostly for cosmetic reasons. Not being perfectly normal is more of a problem today than in the past in our
society and many parents are concerned about that," says Dr. Salle.
Parents are often worried about their child being teased because they look different or because they can't pee standing up,
which is often a consequence of mild hypospadias. "We have a very good technique that allows for excellent functional and
cosmetic results. Complications are very low," says Dr. Salle. The surgery, called a Snodgrass procedure or tip repair, is
typically performed in the first two years of life. "It's important for hypospadias patients not to undergo circumcision.
In the operation, the foreskin is used to make a new urethra or to cover the urethra," says Dr. Salle.
"For psychological reasons, we like to do the operation before the child can stand to pee. If the penis is small, we may wait
a bit longer giving it time to grow, which makes for a better operation," says Dr. Salle. Operating on older children and
adolescents is more difficult. "Because these patients can have many and frequent erections, recovery can be more complicated."
However, even in these cases, Dr. Salle says the prognosis is still good.
Severe cases, in which the urethral opening is located on the scrotum or perineum, or that involve a significant curvature
of the penis, are more surgically complicated and go beyond the definition of a merely cosmetic procedure. "If the curvature
is pronounced, there can be penetration issues as an adult. Additionally, if the urethral opening is too low on the penis,
there is little chance of achieving insemination," says Dr. Salle of the future implication of a severe and unrepaired hypospadias.
Occasionally, the position of the urethra and the look of the penis combined can make it difficult to determine the gender
of a newborn with hypospadias. In these and other cases that affect parents psychologically, Dr. Salle usually brings in a
social worker to help parents work through their thoughts, feelings, and decision making processes.
Emotional issues and their impacts
"I've had a three-year-old say to me 'I know I have a penis but I have to sit to pee. Does this make me a girl?'" says Barbara
Neilson, a social worker at SickKids, who specializes, among other things, in helping families in cases of so-called ambiguous
genitalia. "In my experience, it's always better to talk about it than not."
In an effort to avoid any negative psychological impact on the child as he grows, Neilson recommends that parents create a
'life book' that records the thoughts, feelings, and processes that occurred as a result of the hypospadias. Although more
frequent with ambiguous genitalia cases that involve some kind of intersexuality in which the gender of the child is difficult
to determine at a genetic and hormonal level, adolescents can become enraged as they learn about profound decisions that were
made on their behalf when they were infants. "Having a book that explains everyone's thoughts, actions, and feelings can help
kids understand that parents and medical staff tried to do the right thing," says Nielson. "Teens blame parents for everything
anyway so it's better to have the information ready that answers their questions why." Parents are encouraged to write letters
and take pictures so that as the child grows, they have a better sense of what the parents and doctors were facing.
Beyond the potential for a negative psychological impact on the child, parents themselves often need to talk through what
has happened. "Some parents go through a kind of posttraumatic stress disorder, especially in the more severe cases when ambiguous
genitalia are involved," says Neilson. "Parents worry about their kids being called freaks or they may worry that this implies
that their child is gay. We offer to introduce parents to other parents if they want and we give them information through
web sites and so on."
The good news is that most boys with hypospadias grow up to be perfectly normal adults without any negative social or emotional
effects. Being open about it likely helps that process. Still, some parents worry about the effects of early surgery.
"People weigh the pros and cons of early surgery; trauma now versus trauma, and often trauma with a psychological component,
later. Most people agree it's best to do the surgery early," says Dr. Salle. "We do about 250 repairs a year at the hospital.
We are comfortable about the surgery. I tell parents 'if it was my own child I would do it.'"
For more information on hypospadias
For a detailed and interactive description of the physiology of hypospadias, please visit How the Body Works: Hypospadias.
In May of 2006, SickKids is hosting an international workshop on hypospadias. The gathering will generate a wide discussion
on the issues. Dr. Snodgrass, who pioneered tip repair surgery, will be in attendance along with many other experts, both
surgical and otherwise, from around the world.
