What is most challenging about working with this population?
The challenging thing is that it’s a complex patient and it can be frustrating because despite your best efforts they may still be incontinent or have kidney damage. We have a solution for everything, but some of these things are limited and you really feel sometimes like you’re not doing enough because you just don’t have anything else to offer. That can be frustrating.
Carlos Estrada, MD, Myelodysplasia Program, Department of Urology
The hardest thing about pediatric urology is dysfunctional voiding, kids who have problems with wetting both day and night, because it’s socially extremely hard for the child. It’s not like a broken arm, there’s nothing that you can put your finger on: “Yes, your arm is broken and we can fix that.” That’s a very easy problem. Yes, surgery to fix it may be complicated, but you know what’s broken. With kids who have dysfunctional voiding, you don’t know what’s broken. It’s sometimes very hard. You can do all the testing in the world and still have no idea why these kids having accidents. It’s a multi-factorial thing: maybe there’s some underlying anatomic issue or neurologic issue, or maybe it’s social, maybe it’s behavioral, maybe it’s the environment that they’re living in. You need to put that all into the equation, and that’s not a quick visit! There’s no quick answer, which makes it even harder for the family. By the time they see you, they’re often really tired of seeing multiple doctors, and they assume you’re going to have a treatment for them: “Oh, sure, here! You’re supposed to do this and now your child is dry.” But it’s a long process, it takes time, parents get frustrated, kids are obviously very frustrated, and it can get frustrating for the physician. You sometimes feel that in a room when you’re meeting with these families, so it’s important to be as positive as you can.
Richard Lee, MD, Department of Urology
The most challenging thing is trying to get one hundred percent success rates in achieving continence. These families go through quite a bit of stress even before they try a medication, or before they consent to a surgical procedure, and if that doesn’t work out the way that we want it to, and they have a complication or they need a reoperation, or they have a major complication with a bladder rupture, these are very difficult challenges. As much as we discuss possible complications and outcomes ahead of time, they’re a big challenge when they arise. Obviously we want things to be perfect, and when things go wrong that’s the biggest challenge.
Joseph Borer, MD, Department of Urology
The challenge is that lots of times people are stressed. They come in and they want a quick fix: “What can we do that’s going to make this go away?” Often they’re pushed to come in because they’ve got to get their kids to day care, or get them to summer camp, and parents are stressed out because they’ve got to work – “How am I going to do this? I need them to be there!” – and the kids want to go…Sometimes that’s the hard piece, explaining that it’s a process, and it’s going to take time. For some families, that’s not what they want to hear. They just want this to go away. It can also be frustrating that they need to come back on a regular basis. Some people are frustrated by missed school days, and I don’t want to replace one problem for another. When I started I was doing one clinic day, and now I have two clinic days. There’s a plan to expand even more and have someone else work with me, so we can offer enough time for parents to bring their kids back without missing extra school time.
Pam Kelly, PNP, Clinical Coordinator, Urodynamics and Voiding Improvement Program
What is most rewarding?
The most rewarding thing is having the child come back to see me after instituting this program and be happy, seeing them smile and say, “It’s not such a big deal to do catheterization! I can now do many things that I couldn’t do before.” I remember one patient who is now a lovely young lady in her mid-20s and whom I’ve been taking care of for over 15 years. She started catheterization when she was in junior high school. She went through high school, getting top honors, attended college, had a very active social life in college and afterwards, and now works for Disney. She has been an inspiration, and I relate her story to many other children whom I’ve seen over the years. When I see her she keeps telling me, “If somebody doesn’t like me because I have to catheterize to empty my bladder, they’re not worth knowing.”
Stuart Bauer, MD, Department of Urology
It’s most rewarding when you see them becoming independent, and they’re so happy when they’re finally dry! This 13 year old girl who just came back, she’s so happy now, like, “I’m dry!” Then they get up and move on and they just get going with their lives. That’s what you want to see.
Richard Lee, MD, Department of Urology
The biggest satisfaction I have is when we see children become continent for the first time. We see children from around the country or world with leakage and severe rashes on their perineum and pain or difficulty catheterizing through the urethra. We see them become dry, have normal perineum skin, start to catheterize themselves. That’s the major satisfaction that we get out of this; the majority of the times we do the reconstructive surgery, that’s what we have as a result. It’s very satisfying when it goes well.
Joseph Borer, MD, Department of Urology
It’s very rewarding! I really love working with the guys because it’s just such a big push to get them over that hurdle, figuring out how they can learn. I might say, “Well, just go in an inch each day, and see how much further you can go,” and he’s like, “Okay, I can do this.” It’s about finding out exactly what they can do and building on that. Going from “No, I can’t do it!” to being able to catheterize and having decreased renal issues because they’re emptying their bladder – it’s just a very big deal.
For the kids, it’s more about being dry. Sometimes kids don’t really get the whole picture: “Yeah, my kidneys are now healthier,” or “My bladder’s now healthier.” They kind of get that, but it’s more about if they’re dry: “Gee, now I’m dry all night!” or “I’m dry during the day!” That makes a big difference to them.
Diane Manning, RN, Department of Urology
When I’m able to teach a child and they’re successful, they’re really so excited, we all have tears in the room. I am a big marshmallow, so that’s very rewarding for me. Also, when they come back for their appointment, and they show me their underwear, and they don’t have pull-ups on anymore! That is a very cool thing, and it’s all about what we do.
Rosemary Grant, RN, Nurse
This is an area I really enjoy. I really like working with the kids, and it’s rewarding. The kids come back saying, “I went on my first sleepover that wasn’t at my grandmother’s house, and I didn’t have a pull-up!” And the parents say, “There’s so much less laundry!” When you see the tension is gone from these families, and the kids are proud of themselves – “Look, you’ve been dry three days, that’s never happened ever!” I point out the little things so they can see progress, because it can be a slow process, and giving them the positive feedback is important.
Pam Kelly, PNP, Clinical Coordinator, Urodynamics and Voiding Improvement Program
It’s rewarding to see when kids thrive! That young boy who was not in a good social environment, I saw him yesterday and he’s like a different kid! He seems so relaxed, he’s more comfortable, he physically looks better, he has grown, just from the simple change of starting to cath and taking better care of himself.
Rebecca Sherlock, PNP, Clinical Coordinator, Myelodysplasia Program