Amanda - posted on 10/20/2009 ( 16 moms have responded )
I have a 6-year-old son, Gabe, who was born with epispadias. He didn't have his foreskin removed at birth because of his anatomy. He, basically didn't have a urethra. His penis could be opened like a book and he would urinate from his belly. His bladder neck also sits too high and prevents the muscles in his bladder from stopping the flow of urine. He's had many scopes and ultrasounds. He's had 2 surgeries (the 1st lasted 8 hours) to create a urethra, repair chordee and fistulas. His penis looks fairly normal now, other than length. But, now we're battling incontinence. He had DEFLUX injections in Feb. We thought it worked, but no. He goes to see his surgeon in Dec. when we'll probably schedule a 2nd round of injections. I hope it works. If it doesn't, he's looking at bladder reconstruction. Anyway. That's Gabe's story. I'm not looking for advice or a shoulder to cry on. I just want to talk to another mom who knows what I'm talking about.