A Mitrofanoff procedure, or Appendo Vesicostomy is a surgery that creates a catheterizable channel, an alternative to cathing through the urethra. The channel goes from the bladder to the abdominal wall, usually through the belly button.
The Mitrofanoff was our choice. The surgeon said they could put that in, and he would be able to tighten the bladder neck up a bit more, and if it turned out he didn’t need the stoma, they could just not use it.
Our doctor said it was like half-and-half of the people who chose it and didn’t. But he did say he would recommend it: that if Eric did have to cath, it was better compliance than having to cath from below…We went with the Mitrofanoff to have a better chance at dryness.
Mother of Eric, age 8
The hardest decision
We went out to Boston, met our doctor here, loved him to death. He warned us of a lot of things, more than our local doctor could, because he’s very knowledgeable – he’s been there! He’s in Boston, where he’s seeing kids that come from around the world. He explained to us that the vesicostomy was probably the best route to go, but when Jared started getting very active (and he always kind of mentioned age three), we might want to think about the appendo-vesicostomy, which is what Jared has now.
Our local doctor didn’t think that he should do that at that age – he thought more like age ten or twelve, and have him keep the vesicostomy until then. We were so adamant because our Children’s doctor was the one who sat us down originally and explained everything to us, and we’re like, “No, no, we knew at age three that we were going to go through the belly button, because there was no way that he could have a vesicostomy for that long!” He wouldn’t be able to function! If he was in a wheelchair, that’s one thing, but he was very into sports, loved to run, loved to do everything!…So we had to make a decision, and that was the hardest decision we had to make.We trusted our doctor from Children’s. We knew that a vesicostomy just was not going to work. We knew what we were going through at age two – It was only going to get worse…If you look at his belly button, you wouldn’t know any different unless you really looked really close and said “What is that?” From far away his belly button just looks like an innie!
Mother of Jared, age 6
We couldn’t hold him down
He never really [cathed through the urethra] – he was traumatized. And neither my husband or I could hold him down to give him pain. We came in to talk to the doctors about something else and they told us about this Mitrofanoff channel. And I read up on a lot of other children that had it and I said, “Mike, let’s go for it.”
Manny was part of the decision. I had to go over it with him – there were certain things that he didn’t really understand until after. And he was scared after. He felt like, “Oh, that’s probably going to hurt like the other one!” We wanted everything to turn out right and we wanted this to work. Because if it didn’t he wasn’t going to let us do the other way without a big fight.
Mother of Manny, age 10
He does it himself right through the stomach. He could sit here and cath while you and I are talking. On a road trip, everyone else has to get out – not him. He’s able to pee by himself, pretty much – independence, that’s what it is! He got used to it and does it himself! Does it with his eyes closed.
Mother of Manny, age 10
We gave him the option
They just explained the best option. They thought if we were to put an opening from the belly button through to the bladder that that would work and he could cath himself through that. And we gave him the option. I said, “These are what your options are,” and he said, “I’ll do it.”
He has an ileostomy that we tried to cath a couple times to do procedures with and you couldn’t touch that. He just totally
freaked out, so we would have to sedate him. So the concern was, was he going to be able to cath himself through his umbilical area? But he was convinced that that’s what this was for, and after the procedure was done, he looked at the doctor and said, “I’m taking the tube out and I’m putting the first catheter in and I’m the only one that’s going to use the catheter,” and he did! And the doctor was great. He said, “I’ve never allowed anybody to take it out and I’ve never allowed anybody to cath themselves the first time.” But Rob was really adamant, he was going to be doing it and he was going to be the only one doing it, and so they just told him what to do and he did it.
Mother of Robert, age 16
Going in prepared
I wanted to know ahead of time, so I called them up and I said, “I want to know what to expect when I come home,” and they said, “Well, we’ll give it to you in the hospital.” I said, “But I want to know before I go to the hospital.” And they sent me everything.
So you can ask before you go to the hospital for all the information they would give you post-op. It was great, because I wanted to prepare Robert for everything that I could possibly prepare him for. So I just got everything that they gave me – they gave me all the handouts, how to cath, what you would do and all kinds of information about the procedure, and they just mailed it to me and we just sat down and I gave him the booklets and we looked at it and talked about it. And then when we went in there they gave it to us all again, but it was a refresher because we had already talked about it and read about it. It was kind of nice going in prepared.
Mother of Robert, age 16
Dad: The operation is usually 3 ½ hours, but for him it was nine.
Matthew: They tried to use my appendix but they couldn’t use it. Apparently it was too small.
Dad: They make a tube from the bladder to the belly button using the appendix, but it was too small, they had to throw it away – so he’ll never get appendicitis! It was a 3 ½ hour operation with the robot, so when they found out they couldn’t use the appendix…
Matthew: They had to use part of the bladder, just a small chunk.
Dad: Because his bladder is just so huge, so they took a piece of his bladder and made it. So it ended up being nine hours – they couldn’t use the robot anymore. The doctor came back and he broke scrub and I thought, “Cool, he’s all done!” And his mother says, “No, that’s not a good thing. When you break scrub, there’s a problem.”
Matthew, age 19, and father
High risk for renal failure
He developed a phobia where he wouldn’t cath himself anymore. What happened was he went through a period of time where he would cath himself and it would be painful and he would fight me on it. I caught him where he said he had cathed himself but he really didn’t. At one point I would have to stand in the bathroom and watch him do it, and then he would just get really upset and it would kind of set him back. And it became a very upsetting thing for him to do.
Something happened at school or at his father’s house, because when he came home on this particular weekend, he just wouldn’t do it. He wouldn’t let you go anywhere near him, he wouldn’t let you touch him, he just would not do it. We took him to see a psychologist to see if she could help him with that and how to cope with his fear and phobia, and that didn’t work. At that point it had gone on for four to six weeks and his urologist decided that he was at high risk for renal failure and that he needed to have the surgery done.
Mother of Ethan, age 13
That procedure was a lifesaver
I was all for it. Ethan was so happy to be having it done, because I explained to him – I was very honest with him, “This is what’s going to happen, this is what it’s going to do to you. You’re going to be in a lot of pain if you don’t get something done. I understand you’re scared, we’ll do what we can to help you.” And he got very stressed and frustrated, and then the morning of the surgery when he was waiting in the waiting room to go for the surgery, he started crying. I said, “Honey, what’s the matter?” and he said, “I’m just so happy!” It was the thought of knowing he was going to have another way to take care of himself where it wasn’t going to hurt and he wasn’t going to have to go in his private area! He felt this was something that he could handle. And he knew he couldn’t get over this phobia and he was devastated by it. Just the relief and his self-confidence went completely back up. He went through a small bout of depression when he was dealing with that, so that procedure was a lifesaver. I don’t know what they would have done if he didn’t have that done.
Mother of Ethan, age 13
I think that obviously the disadvantages are that it can close, you can create a false passage like he did, you can have some trouble catheterizing that way – but I do think that though we went through all of that and going to the doctor all the time, I think the advantages are way more. He is more apt to actually cath, and his levels were so high before because he was refusing to cath or lying to us and saying he was and he wasn’t… I’d say it saved his life because I didn’t know not to get it in his head to cath! It was just such a bad stigma to cath through the urethra. Really, the advantages definitely outweigh all the trouble or any doctor’s visits or whatever it took, because I know that he is actually draining his bladder now.
Mother of Dylan, age 16
Absolutely, let’s go for it
His doctor suggested creating the stoma in his belly button so he can catheterize through there instead of his penis and it’s a little bit less stigma and easier for him. I was apprehensive about it because I know it was such major surgery but we were thrilled too and relieved because I knew it would be easier on Dylan, cathing through his navel instead.
We said, “Absolutely, let’s go for it.” As soon as we knew that was an option we started to talk about it, and it was months later until even the doctor said “Yes, I definitely think this is the way to go.” There was really no hesitation at all…
Like I said, it was major surgery. We thought we were prepared for it, but it was a little harder on Dylan than we thought it was going to be. He had a lot of pain in his abdomen from it. He bounced back well and he recovered well, but it was a process that took months for him to be back fully to his normal self for sure. He missed a lot of school but that was fine academically. I think the biggest thing was that he actually tried to do football – it was just too hard on his body, and that was one of the biggest letdowns. He thought his life was going to resume to normal 100%, and he went to the first week of football practice and he was like, “I can’t do it.” That’s because his body had been through so much he was just fatigued! That was probably the hardest part.
We did talk about it. He seemed to come to terms with it but it took him a few weeks. The school was really great and they gave him the option to help out with the team if he wanted to. They were just really great about it!
Mother of Dylan, age 16
Now it’s just second nature
With how he healed and the position the catheter was when everything healed, we kind of played around with different ways to help him get catheterized. For the beginning part, it was easier for me to have him lay down and be on his side. For a while it was more comfortable for him when he was doing it himself to sit down and do it. Now it’s easiest for him to do it standing. So he kind of played with it a little bit. It was the same type of thing: he would get frustrated, I’d have to be there with him and I would help him, calm him down, tell him he’s doing good, just relax…The other thing too was if his stomach was real distended (because he gets a lot of problems with gas), I would have to do it for him because he couldn’t see his belly button. His stomach would just blow out. So then I would have to help, and then it got to a point where he was able to kind of feel and just tell where it’s at, to do it himself, and now it’s just second nature to him. Ever since the surgery, it’s not a problem. It’s not an argument, it’s not a fight. “You need to go take care of yourself.” He’s like, “Okay.” And he goes and he just does it… If something like the Mitrofanoff had been done for him sooner, it would have been phenomenal. He would not have gone through the year and a half, two years of stress and anxiety that he did…Surgery always wants to be the last resort, but when the outcome can be that much more beneficial, it makes a huge difference.
I don’t know how that’s going to affect him when he gets older, sexually as he develops, because at this point, you can’t go anywhere near him. He won’t let you touch him, you can’t even look at him, it’s a very, very sensitive area for him. And the thought in the back of my mind is, I wonder if he would still feel that self-conscious had the surgery happened a year earlier, when he first started having problems, instead of waiting until it got so bad that it was like, “Okay, he needs to have this done now.”
Mother of Ethan, age 13