Summary of ARM Care

So the take home message for all of the parents that are out there is that if your child has been diagnosed with an interectal malformation, it is important to understand that this is a journey, that the care of the individual is not a static come and see the doctor once and everything is addressed. Um, because things change as the children grow, and that's the difference between being a pediatric specialist and an adult doctor is that we have to take into account all the different physiological, psychological, anatomical changes that happen from birth until adulthood, and we have to be prepared to address those changes if they are going to harm your child. The care that we provide has to be collaborative. It has to be patient and family centered and socially and culturally competent, and what works in North America may not work for a family that's coming to see us from a different country. And so we have to understand what are the societal implications of some of the treatment plans that we're going to put in place in different countries. Do they have access to catheters reliably? Do they have running water in their home? These are all things that are going to help us understand. Can the care that we're asking the family to do be provided? If not, we have to be more thoughtful in what we're asking the families to do. And the optimal and safest management is only achieved through multidisciplinary teams. We can't do this alone. The care is too complicated. No one specialty has all of the knowledge to provide your children with that safe care. And it is really important and really critical to understand that the colorectal, the urological, and for the female patients, the gynecological care has to be managed in continuity. It can't be segmented, as Debbie said, cannot be siloed because then it. It adds complexity to your child. It exposes them to more anesthetics. It adds to the burden of care and certainly adds to the cost of care, increasing complications. Most importantly, it is really important for you to understand that it's our privilege to be able to provide this sort of collaborative care for these patients, and we would love to be able to be involved in the care of your children also.