Mom of Child with Epispadias
by Erin
Hi, everyone. My name is Erin. I have a 7-year-old little boy named Travis who has corrected epispadias. We didn't find out what it was called until he was almost 3 years old. He was born in Germany at an American hospital, and they didn't have a pediatric urologist there. We moved back to the States when he was 4 months old. None of the pediatricians we went to ever were actually able to give us the name of his condition: epispadias. They thought that he just had a hidden penis and that once he lost weight, it would pop out on its own.
By the time he was close to 3, I was tired of hearing that. He was getting slimmer and taller, and nothing was changing. Our pediatrician never referred us to a urologist, so I found one on my own. We went to Dr. R in Houston. Right away he was able to tell us what it was. We never got a second opinion; we just went with Dr. R. I was very comfortable with him. He was very nice and knew what he was talking about.
Travis had his surgery 2 days after he turned 3 years old. He did very well with the surgery. I was scared to death, like every other parent of a child with this kind of condition. They gave him some purple stuff to make him loopy. He was so funny! He was all wobbly and giggly. He was not able to walk after they gave him the medicine for safety reasons. The thing I was most afraid of, and this sounds silly, was his getting the IV. They didn't do that in front of us, though; they waited till they had taken him into pre-op. The surgery lasted about 2 hours, and it produced amazing results. Before his surgery, he didn't have a penis at all on the outside of his body. I believe it is called penopubic epispadias. After the surgery, he finally had a penis on the outside of his body.
It was an outpatient surgery. Because I was so scared, I wished they would have kept him in the hospital until after the bandages came off, which was the next day. We had to take off the bandages ourselves. I had to wait until he was asleep because I knew it would be too traumatic to try to do it while he was awake. I let a very wet wash rag sit on his bandage, and that made it much easier to take off. He also had to have a catheter for a week. That was the hardest part. He was already potty trained before his surgery, and he was very afraid of peeing out of the catheter. He tried to hold it and hold it for as long as he could, but he finally had to go. He cried the first time he went, but after that he seemed fine. He didn't like taking his pain meds at all either, but I had to force him to so that he wouldn't be in pain. If we went too long between doses, he was in pain.
Now it is 4 years later. I know he will have some issues when he gets older. Right now, he has two issues, the bigger one being keeping his penis clean. He is getting to the age where he needs to be cleaning himself, but sometimes he doesn't do the best job. He gets fungal rashes around his penis sometimes, and we have to put antifungal cream on it to clear it up. He also leaks if he holds his urine too long. We have been back to the doctor for that, but we were not able to find a reason for his leaking. His bladder holds a normal amount of urine, and his bladder neck is functioning properly. The doctor feels it is just a normal little boy issue, not wanting to stop playing to go to the bathroom. The accidents are happening less and less now. I think that once he gets just a little older, he will be completely accident free.
I worry about when he gets older. Boys and men with epispadias often have a shorter-than-normal penis. I worry about other boys making fun of him in the locker room. I worry about him being rejected by girls or women when he gets to the age when he starts to have sex. I just hope to God he finds a wonderful woman who doesn't see length as an issue. People come in all different shapes and sizes. There are several wonderful girlfiends and wives on the HEA forum who make me see there are sensitve women out there. I absolutely love hearing from them. It really reassures me that he will be able to find a girlfriend or wife and have a good sex life when he is older.
The HEA website has been a huge support system for me. I love talking to all the people I have met on this site. I wish I had found it before Travis had his surgery. There are so many people who can give advice and stories from their own lives. I hope that the site continues to grow and help people!