Intervention Timing of a Child with ARM

Timing of intervention is, is really based to begin with on what's gonna keep kidneys the safest. So, in, uh, in infancy, um, we will always assess, as Doctor Reddy talked about earlier, um, where, what is the status of your child's urinary tract? Is there any obstruction, which sometimes we can see in children with anorectal malformation. If so, what we're going to do is do whatever we need to do to relieve that obstruction in, in girls with cloaca. Sometimes that's um relieving or draining the hydrocopos, that collection of fluid that can Um, collect, um, and obstruct the ureters, the tubes that drain urine from the kidneys. Um, Other children might have ureters that insert into, not into the bladder, but into the vagina or into the ejaculatory duct so that urine can't flow freely. In that case, it might be a temporizing, um, surgical procedure, um, such as bringing the ureter out to the skin to drain so the kidney can drain safely. Um, in infancy, these kind of procedures are temporary measures to protect the kidneys because we want to protect and save function that's, uh, present when the child is born. Um, timing of, um, more complex procedures such as, um, things that you may have read about and heard about, continence procedures to, um, uh, for children who cannot achieve urinary and or fecal incontinence, um, without intervention from surgery. Um, we reserve those, um, procedures, uh, for around early school age, um, 56 years of age. We want the child to be able to be ready to participate in their care. Um, we want the whole family to be ready, so ultimately timing we. Depends on readiness of the child and the family. Um, we won't do these procedures early like age 3, but we certainly don't say they have to be done at age 5. If your child and your family is not ready for Metrofenoff Malone until they're 8 or 10, that's OK, because what's most important is that we do these things on the timetable that is appropriate for your child and your family. That's the only way we'll achieve best success. And, and that's the right way to provide care for you. I couldn't agree more with Debbie. I think that it is critical to understand that. We will strive to keep your child's urinary tract as safe as possible, but when we're going to decontinence procedures, doing a bladder augmentation when needed, or, and that's when a child is born with a bladder that's not large enough to provide a safe reservoir for urine, we can surgically make that bladder bigger. All of these things require a big operation and your child is the recipient of all of that surgical care, so we really want them to be an active participant in the decision making, and you'd be surprised how much a 5 or 6 year old child is listening to what we're talking about and um. Is going to express questions to you or us, but more importantly, the fear that they can't express and that's important for us to be able to interact with them and find out what are these concerns that your child has about what we're gonna be doing and how do we provide them with coping mechanisms to ensure that those fears are being addressed. um, I can't. Impact upon all of the families out there that it is really important to engage the child in these decisions as early as you feel appropriate and you as a parent know that better than anybody else. We do actively ask families to seek counseling before any large reconstructive surgery. I think it just makes the child an active participant, and they don't feel betrayed by the fact that you took me to the hospital and I'm in the hospital for 2 or 3 weeks. I've lost all my freedom. I can't do the things I enjoy. I'm stuck in this bed and. You know, and I'm not happy about it, and I think that getting a mental health provider, whether it's a counselor at school or a behavioral psychologist, to interact, engage, and learn more about your child and help you learn more about your child and their concerns so that all of those things can be allayed in a proactive manner, it just makes that surgical journey a much smoother journey for everybody involved, most importantly for your child. And with that smooth journey we get better outcomes, we get better buy-in from your child and better compliance, fewer complications. And I would even go on to say it is not a bad idea to think about counseling early in your child's journey, um, both for your child and for your family if you have the ability to connect with a counselor who Um, meets the needs of your child who's able to communicate with your child, who you're able to communicate with early, um, and then periodically see this provider when times of stress like surgical procedures or a change in life stages such as moving to. Uh, from preschool to regular school or moving from middle school to high school, um, occur, um, a child may have a greater need for support and assistance with coping mechanisms, so it is never a bad idea to engage that support early on in your child's care. Caring for a chronic condition, um, both for your child and for your child, him, him or herself is difficult, and I mean, I think we all know that, uh, a chronic condition adds some burden of care to the child's life and so support throughout that, um, learning to take on. Who I am and what that means for my difference from my brothers or my sisters or my friends, um, often deserve some assistance and kids are better for it, um. And it it allows them to ask those questions that, um, they might not have said out loud, um. Why am I different, um. I hate doing this. Why do I have to, um. How can I make this easier? How can I fit this into my life better? Um, all those kind of things can be, um, a helpful outcome of, of some kind of mental health or counseling support.