What happens if a patient cannot tolerate traditional Catheterization?

Some kids have more sensation than others, and spina bifida is heterogeneous in this way. Some kids are paraplegic and have no sensation below a certain level. Some kids have a lot of sensation, so that will impact catheterization and the comfort one has with it. For those with reasonable sensation, or a damaged urethra from years of catheterization, we can offer them an alternative means where we use the appendix or a small segment of intestine, connect that to the bladder, and connect the other end to the belly button. It’s continent, so it doesn’t leak, and they can catheterize through their belly button. So that’s an elegant solution to either pain with catheterization, or inability to do so, or inconvenience with catheterizing.

For kids in wheelchairs, cathing is a pain in the neck, it really is. They have to transfer out of the chair – many of these kids are obese or overweight because their physical activity is limited – you have to transfer out of the chair, prep the area, catheterize, empty, get back in the chair. When you have this alternative means of catheterization, you just wipe the belly button, stick the catheter in, drain into a cup, done. It’s a dramatic improvement in lifestyle for a lot of these kids. I tell families early on that catheterization may be great for them without trouble, but if they ever do have trouble, we have surgical means of making it easier down the road.

Carlos Estrada, MD, Myelodysplasia Program, Department of Urology

 

Sometimes there is difficulty catheterizing, even if the child is participating and is compliant with that need. Other times a child is not tolerating catheterization through the urethra at all: it’s too painful, too anxiety-provoking, it just can’t be performed. In those situations, an alternate route for passage of the catheter to intermittently empty the bladder would be an ideal solution – although it’s not always 100% possible to know that a child is going to be okay with passing a catheter through an opening in their abdominal wall when they weren’t comfortable having a catheter pass through the urethra.

Joseph Borer, MD, Department of Urology

 

I think a big part of our role as nurses is to advocate for the family, and our physician team works collaboratively. If we spend a lot of time working with a family – Diane may have a chart on her desk, and she’s worked hard, spoken with the pediatrician, maybe they’ve had an appointment with a psychologist, and the child just can’t get to that point, we recognize that we need to do what’s best for them health-wise too. Often times we will sit down with the physician and say, “We’ve hit a wall. It’s so stressful and so traumatizing for this little girl or little boy to try to pass this catheter.” In males, catheterization can be quite painful until they learn how their body functions, how to relax the sphincter muscle and pass that catheter so that it slides into the bladder. It’s a big deal to do, and for some males, maybe because they have a congenital anomaly, they might not be able to get to that place to be able to relax their muscle and accept urethral catheterization.

We want these kids to feel good about their bodies, we want them to be dry if they’re wetting, we want them to have healthy kidneys. So that’s when we go back to the table as nurses, to our physician team and say, “This family is just not going to do it, we need to talk about the next step,” which would be somehow, someway creating a catherizable stoma. And at the same time, we also provide some preparation for parents. We have pamphlets, booklets, packets, and family match – there might be an opportunity in clinic where you have two kids who cath a stoma, or one who caths and one who they’re trying to make that decision, that you can make a nice family connection. So I think that is a huge part of our role here as patient advocates when we hit a wall.

Rosemary Grant, RN, Nurse