“I started looking into hypospadias on the Internet. What a mistake! I was thrown into a world of medical jargon and scary images. Too much information and not enough of it in any language I could understand,” says Amy.
In simple English, here’s what is involved. “Instead of urine coming out of the tip of the penis, it comes out of a hole that can be located near the tip of the penis, on the shaft of the penis, or even by the testicles in the more severe form,” says Dr. Clare Hutchinson, who specializes in general pediatrics and pediatric rheumatology at North York General Hospital in Toronto. “Some baby boys who have hypospadias can also have an abnormally curved penis, or testicles that have not descended from the abdomen into the scrotum.”
Usually diagnosed when babies are first born and examined by their doctor, treatment options vary according to severity. “If the hypospadias is mild, meaning that the hole for urine is quite near the tip of the penis, some boys don’t need any treatment,” says Dr. Hutchinson. “If the hole for urine is further down the penis, or if the penis is very curved or the testicles are not descended, then surgery is recommended.”
She explains that surgery is done in either one or two steps, depending on the severity of the hypospadias, and it usually takes place between six to 18 months. “It’s important to speak to your doctor before you decide to circumcise a boy with hypospadias, as the foreskin is often used during the surgery to help repair the hypospadias,” says Dr. Hutchinson.
Boys with severe hypospadias who have not had surgery may need to sit to urinate because they have trouble controlling their urine stream. They may also have erectile dysfunction or infertility when they are adults. In general though, Dr. Hutchinson says boys with mild hypospadias who do not need surgery, or those with more serious hypospadias that have been corrected successfully with surgery, can stand to urinate and have normal sexual performance and fertility.
Faced with decisions about circumcision and surgery, as well as fears about her son’s future, Amy realized that parents are usually too embarrassed to discuss the condition. So much so that she found the one book aimed at parents and read it cover to cover. Through further research, she found a support group on Facebook and met other parents facing the same issues.
“It was such a relief to find so many other people who were trying to make the same decisions, had the same worries and were willing to talk about their experiences,” says Amy. Through this support group, she became friends with a mom in England and realized they both had the same goal – to raise awareness. They are currently writing a book called Hypospadias Hippopotamus.
“It follows a boy and his toy hippo through surgery, potty training and starting school – all the things that boys with hypospadias can struggle with,” says Amy. “We are reaching out to everyone to raise awareness, with the aim of publishing the book and making it available to families.” (Follow its progress at lcmcclintockblog.wordpress.com)
“It is such an unspoken topic that effects so many families, and I believe raising awareness will help the unnecessary embarrassment that many people feel.”
Originally published in ParentsCanada magazine, December 2013.