I just learned my child has HS/ES. What do I do now?
First, take a moment to relax. It’s frightening to learn that your child has what some call a birth “defect” but human beings are all different and no one is defective. The bodies of people with hypospadias or epispadias followed an atypical path during a few weeks of their development as fetuses. Their genitalia and possibly other organs may look and maybe function differently that other people and these differences may require some adjustments in meeting the child’s needs. It is good to remember that parents of very bright children or those with asthma or those who are quick to get angry need to make some adjustments too.
Even the most severe cases of hypospadias or epispadias are rarely, if ever, life threatening. You don’t have to make any decisions immediately, and you have time to research the condition and get medical opinions from multiple experts before you do make a decision. Use the vast amount of information available on the internet to educate yourself before making any decisions. More importantly, get second (or third) opinions from medical experts so you can get a consensus opinion. Consider not having any HS/ES surgery for your child, a viable option for many or most children. Consider waiting until your child is old enough to take part in decision making about surgery. Finally, get comfortable with the likely possibility that your child will always be at least a bit different and practice open communication, as it is key to minimizing feelings of shame and poor self-esteem. Find out how to make yourself and your child more resilient to all of the different challenges that life has to offer. Read “How do I deal with my child’s condition as he or she grows up?” below.
Can you recommend a good doctor/surgeon for my child?
HEA cannot make recommendations on specific doctors or medical procedures. For general tips on picking a good doctor/surgeon, please read “How do I choose a good doctor/surgeon?” below. Feel free to join HEA’s message board and ask other members their opinions about specific doctors, but bear in mind that one person’s opinion may not be representative, and none of the opinions expressed in the message board represent the views of HEA.
How do I choose a good doctor/surgeon?
The only way you can find the right physician for your son is to talk to several in person. Even if the first one you talk to seems perfect, get a second (or third) opinion. The extra insight and opinions will be invaluable. Ask each surgeon how often he/she performs corrective surgery on boys whose condition is similar in severity to your son’s. Get precise numbers (once per week, twice per month, etc.), not vague terms like “often” or “all the time.” Ask whether the surgeon will actually perform the surgery himself/herself or will simply supervise a less-experienced surgeon. Ask how many stages (separate operations) will be required for repair and how much recovery time there will be between operations. Find out how frequently the surgeon’s operations fail and need follow-up surgery. Again, ask for precise numbers, not subjective terms like “rare” or “occasionally.” Ask if the surgeon has any before-and-after photographs. Narrow down your choices to the surgeons with the most experience treating hypospadias and epispadias and the lowest failure rates. Then consider which surgeon you feel most comfortable with and are not intimidated by or afraid to question. Be wary if a surgeon makes promises that seem to good to be true. If one surgeon promises a one-stage repair whereas all the other surgeons predict a three-stage repair, ask probing questions to explain the discrepancy.
Should my son be circumcised?
If possible, your son’s foreskin should be left intact, because the tissue may be needed for surgical correction. Even if you decide against surgical correction, surgery may become necessary later in childhood, or your son may choose it on his own as an adult. Therefore, unless there is a medical reason for it, circumcision should not be performed.
Should I have surgical correction for my child?
There is no right or wrong answer that can apply to all situations, but there are several points to keep in mind while deciding on the issue. Realize that it is rarely necessary to make an immediate decision, so take the time needed to research the issue thoroughly and talk to different physicians. Always seek out second and third opinions, and ask each physician about the expected benefits and risks of surgery and the consequences of not performing surgery, as not every physician may offer the same advice. 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. There is no magic fix that will make your son’s penis perfect and allow you to pretend that the condition never existed.
What does corrective surgery involve?
The precise method of surgery is constantly evolving, and there are several different surgical techniques for hypospadias and epispadias. However, there are two basic goals of corrective surgery: (1) To straighten the penis (if chordee is present); (2) To extend the urethra to the tip of the penis. Straightening the penis typically involves cutting tissue that is pulling on the tip of the penis and causing it to bend toward the shaft. Extending the urethra can be more complicated, depending on the severity of the condition. Tissue grafts (often from the foreskin) are typically used to create an artificial urethra that will be inserted inside the penis, joining the existing urethra to a man-made opening created at the tip of the penis. Mild cases may be treated in a single operation, whereas more severe cases typically require multiple surgeries.
What are the possible risks and side effects of surgery?
In addition to the risks associated with any surgery, the most common potential problems include stricture of the urethra (narrowing of the urethra typically caused by scar tissue which restricts urine flow), fistulae (holes that may form along suture lines through which urine may leak), hair growth inside the urethra (if the grafted tissue contains hair follicles), and formation of scar tissue which may lessen sexual sensitivity. In some cases, a surgical operation may fail completely, in which case the grafted tissue will have to be removed, and the operation repeated.
At what age should surgery be performed?
Discuss timing of surgery (or multiple surgeries) with your physician. Some medical professionals recommend performing surgery at a very early age because long-term memories are not yet formed (although research backing up this claim is lacking), healing times are shorter, and formation of scar tissue is diminished. Except when there are blockages, the condition of hypospadias is not generally an emergency requiring a rush to surgery. Often the surgery can wait until the child is old enough to take part in the decision making about surgery.
How do I deal with my child’s condition as he or she grows up?
Be open and direct with your child about his or her condition, in an age-appropriate manner. Do not lie to your child or to others about his or her condition or the reason for childhood surgeries. Otherwise, your child may develop a sense of shame and embarrassment, and may be reluctant to tell you about any problems he or she may be experiencing. Young children quickly pick up on differences and can be very cruel, so evaluate how well your child’s school meets his or her privacy needs in restrooms and locker rooms. Ask school officials to make any accommodations that you think might be necessary. However, keep in mind that children will always tease each other, and a child instilled with self-confidence is less likely to be bothered by teasing (which in turn makes him or her a less appealing target for those doing the teasing).
Your child may have special concerns at the onset of puberty, so be sure to address his or her condition as part of his or her sex education. Because your child may try to conceal problems out of fear or embarrassment, it is advisable to have him or her examined by a urologist at the onset of puberty even if your child’s condition was mild, and even if he or she does not complain of any problems. Depending on the outcome of the examination and the severity of your child’s condition, a follow-up visit as a teenager may also be a good idea. Growing up with an awareness of being different and undergoing genital surgeries can be very difficult. If your child’s condition is severe, if your child underwent multiple surgeries, or if your child continues to undergo surgery as a teenager, consider arranging professional counseling to help your child deal with his or her condition during the teenage years.