Cincinnati Children's PUV Approach

One of the concepts that we have adopted here at Cincinnati Jone's Hospital from the Jesuits is this concept of coura personalis. As I mentioned, that postnatal valves, while they are a condition that originates in the urinary tract, the impact is on the whole body. And so our care has to take that into account that we're dealing with the whole individual, not just the urinary tract. And so coura personalis is a Latin term, um, and it's an Ignatian Jesuit principle of care of the whole person. And today in modern medicine we've become so specialized that sometimes we forget that that is our mission is to take care of the whole person and so here we are reintroducing that concept of that our care really has to be holistic and taking care of everything that goes on in the individual. Modern medicine as it's become more and more specialized has created unintentionally created silos and silos are where we have these pockets of expertise. So, uh, example of a silo would be, I'm a pediatric urologist. I'm working in my pediatric urology clinic, and Doctor Clay is a pediatric nephrologist working in her clinic, but if we never chose to speak to each other, we'd be doing the child a big disservice because together we are an awesome team and we're there to protect the child's kidneys and overall health. And we know it's not just nephrology, urology that has to come together. We need a whole team of experts in order to ensure that children with post fetal valves truly get the care that they deserve so they can really live up to their full potential. So our goal here is to work together as a team and in that team are also the parents and grandparents because you're also part of the health care team that's gonna be taking care of your child so we welcome you to be part of our team we educate you about what's gonna be required and help facilitate the care that you're gonna be providing for your child. And this is a, uh, uh, you know, just a pictorial example of what our postcial valve center looks like here. Centered around the child, we have the pediatric urologist, we have nephrologists, we have neonatologists, those are the doctors that take care of the newborn baby. We have seen that there's a higher incidence of some developmental delays in these babies, so we've recruited a developmental pediatrician to monitor and intervene as needed, a pulmonologist to understand the state of the baby's lungs and ensure that the lungs stay healthy. And living with a chronic illness can be very stressful for the family and the child, so we've got uh behavioral health and psych uh psychiatrists available, not just for the patient but also for the family members. And just as importantly, on the other side, we have the coordinator of the post fetal labs program. And that's in our program, that's Nicole Click. She makes the magic that makes all of the individual providers come together and make beautiful music together. So, she's the conductor of our team to make sure that we're all working in coordination together. Children who have kidney damage sometimes cannot assimilate nutrients well, so we have a nutritionist there to help understand what is going on with the baby, ensure that they're gonna grow properly, a social worker to ensure that you, the family have access to resources and, um, uh, instruments, medications that your child needs, uh, sometimes even setting up transportation if you're coming from out of town, providing lodging, all of these things that are also just as important as the care that we provide. We also wanna make sure that we're providing the best care possible and we only can do that if we're monitoring how we're doing and so we have an outcomes coordinator to ensure that every child is receiving the highest level of care that we can and when the child's kidneys do fail and we have to have a kidney transplant plan in place, we work with the transplant coordinator and the transplant team. So it really is a huge team of individuals that we've brought to bear to ensure that the child with the diagnosis of post-lethal valve, that when they come to Cincinnati Children's, that we are providing them with the highest level and safest level of care that we can. And it's really very simple because we want that child and every child that we take care of to be able to live their life to their fullest potential, and that means having appropriate kidney health, minimizing complications that might arise from this diagnosis, ensuring that they can achieve toilet training so they're out of diapers at an age appropriate time. Having the anatomy be as normalized as possible and yes, we are thinking about your child's sexuality because living with a chronic condition, especially if there is something going on with the urinary tract, can impede normal uh sexual function, so we're thinking about that. Even before a child reaches that age because we wanna make sure that anything that we can do to ensure that is an appropriate aspect of their life later in life is being taken care of, our ultimate goal is to ensure that the children can become independent adults and care for themselves, and we can only do that when we function as a team. So the ongoing management when we have a child with posturethral valves is to make sure that if their kidneys at risk, we understand what those risk factors are, mitigate them. Is the bladder at risk, mitigate those, make sure they're getting appropriate nutrition, appropriate psychosocial health, and ensuring that they are being monitored closely to ensure that they get the best possible outcome.