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.
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