If the patient is seen as a newborn, and I know that this child is going to need to be catheterized at some point in his or her life, I bring it up right away. I say, “Listen, this is going to come as a shock to you, you’re not going to understand this right away, but we’re going to try and help you understand as much as you can. We don’t expect you to be an expert at this, but we want to introduce things to you now. You might not need catheterization now, but the earlier you know about it and the more you know about it, the more support you can get, and when it is time to start, you will be ready and your child will be ready.” Because I find that in pediatrics, you never just deal with the child: you’re dealing with the whole family. If the family is anxious, the child is going to be anxious; it goes hand in hand. So in my mind, you have to really treat that caregiver first, and get them mentally prepared to be able to do this, and then everybody can do it.

So that’s our job – we’ve got to teach them how to do it, but not only the physical aspect but also the mental aspect. I find that really important.
I think it’s important as providers to have some foresight to bring it up early and say, “This may happen, I don’t know when. This is what it means, here are videos, people you can talk to, support groups…” I think that helps a lot. The hardest families are the ones who aren’t prepared, and you meet them later on in life, when the child is five, six, seven, eight, nine. That is difficult because now you’re dealing with two issues: now you’re going to have to convince this child to cath, and that is difficult.

Introducing it to older children is tougher, because the older they are, the less open they are to the idea of catheterization. In those cases you really have to hammer into them the medical need: you have to give them a justification, why they want to do it. Because if you think about teenagers, the way we all grew up, it’s like, “What’s in it for me?” It’s a very self-centered time in development, and so you have to develop a way for the kids to understand this is benefiting them. And if you’re saying, “This is going to prevent you from having kidney failure!” they don’t get that, because they have a sense of immortality about them. So you have to explain to them in really concrete detail about pain, about being very, very sick, about ways that not cathing could hurt them – going in that direction rather than being so abstract, long-term.

Hiep Nguyen, MD, Department of Urology