Management Goals for Children with Anorectal Malformations

Here in Cincinnati, we have some very simple goals of management for the urinary tract in children who are born with anorectal malformations, and this assessment, it begins right at birth. And so at birth when we are called to assess a child who's born with an anorectal malformation, we're starting off to understand what is the degree of involvement of the urinary tract. Are the kidneys OK? Do they have both kidneys? What's going on with the urinary tract in terms of the bladder and the ability of the bladder to empty? And we understand that a lot of times the children are born with healthy kidneys, but if the bladder is not working well, then that bladder can destroy the kidneys. And so we're very cognizant of this, and we try our best to get a good assessment on the baby and ensure that we're putting in place a safe plan. As pediatric urologists, we have 3 simple goals for all the children that we take care of, and the first one is to protect the kidneys. As I mentioned, a lot of times the children are born with healthy kidneys. The second goal then is to ensure that at an age appropriate time that the child is able to develop social continence, and social continence is not just a urinary incontinence but also fecal continence, and we mean that the child can be dry during the daytime for about 3 hours and can sleep overnight without the need to empty their bladders. And whether this means that the child can do that by themselves, urinating in a way through their native urethra, whether the child needs to be taught intermittent catheterization. Whether the child needs surgical intervention to reconstruct that urinary tract to enable that social continence, those are the things that we won't know right at birth, but we do stand behind the commitment that whatever we do to ensure social continence, we're going to ensure that the kidneys are safe. And then our last goal, just as important as the first two goals, is to ensure that whatever we've done to enable protection of the kidneys, to enable your child to have that social continence, that they can then do that with a normal quality of life and be independent in their care. So that is kind of an overall viewpoint of what we're going to be doing. In the care of your child and at different points in time, we are enabling or involving different team members of our collaborative care model to go ahead and activate certain aspects of the care model. And at our program we can Engage with your child up to age 21. Around 16 years of age, we begin this process of transition of care where we're now going to say, at age 21, you are going to be transferred over to an adult facility with adult providers, whether that is here in Cincinnati or whether that's in your hometown. Or your, uh, your, your region of the country or the world that you're from, we're going to facilitate that over a 5 year process so that handoff is a safe, very thoughtful, purposeful, planned handoff that everyone's comfortable with and it's not going to be just slamming the door in someone's face and saying, thank you very much for letting us take care of your child till age 21, you're on your own now. That is absolutely the worst thing that anybody could do, and we certainly don't want to be a part of that process. We want to be a thoughtful progression of this handoff of care.