Epispadias
Question
My son just turned 4 and has what appears to my wife and I (and our child's urologist) to be the equivalent of a hidden/concealed penis. I am glad that the Internet has provided us with some info on this situation as we have never seen or heard of such a thing before.
Our son was born with epispadias. We are still not sure if that is a common combination with this problem. He has undergone two attempts to correct this condition and will need one more (preferably with the concealed penis correction if possible).
We are looking for the most experienced physician to help treat this very specific problem. Can you comment on your level of experience with this problem?
Sincerely,
John C. - Alberta, Canada
Dr. Greene's Answer
John, I commend you and your wife for your search and advocacy on behalf of your son. As you are aware, epispadias is not a common problem. It affects fewer than 1 in 100,000 boys. For those who do have it, some form of hidden penis is commonly involved. I’ve taken care of a few children with this combination as a general pediatrician, not as a urologist or surgeon.
You are quite right that a pediatric urologist, as opposed to a general urologist, is likely to be the best doctor to perform your son’s surgery. That your pediatric urologist is also the Chief of Urology speaks highly of him, and he may be a good choice. Still, it would be nice if it were practical to at least have a consultation with a pediatric urologist who has direct, successful experience with this procedure. I would encourage this if at all possible.
A Children’s Hospital can be a good place to look for such a person. The Alberta Children’s Hospital is quite respected — though I believe it is in Calgary, and may not be practical for you. In Edmonton, the Stollery Children’s Hospital — part of the University medical center — is also respected (like our local children’s hospital within a hospital at UCSF), especially after their major redevelopment.
If it is easier to come to the States, there are a number of good choices here, such as the Children’s Hospital of Philadelphia or Boston. In my area, Stanford and UCSF are also quite good).
My best to you in your journey.
Alan Greene MD
Our goal is to improve children's health by inspiring parents to become knowledgable partners who can work with their children's physicians in new and rich ways.