Transcription:
Complex Congenital Anomalies and the CARE Clinic

Melanie Cole: Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole. Joining me today is Dr. Margaret Mueller. She's an expert in female pelvic medicine and reconstructive surgery, and an Assistant Professor of Obstetrics and Gynecology at Northwestern Medicine. She's here to discuss how she cares for young women with complex congenital anomalies, her work, and the very unique program at Northwestern Medicine.

Dr. Mueller, it's a pleasure to have you join us today. I'd like you to start by telling us about the unique philosophy and approach of the CARE clinic at Northwestern Medicine. Tell us how it came about. Tell us what it is.

Dr. Margaret Mueller: Yeah, thanks so much. I'd love to. So the first thing I want to do is just describe to you exactly what the CARE clinic stands for and it's the Collaborative Advanced Reconstructive Evaluation for young women, girls, adolescents with complex GU anomalies. So really this means any young woman, girl, adolescent that has a difference in the development of her genitourinary tract is the perfect patient to be seen within this clinic.

The clinic really does take a multidisciplinary approach to caring for these women and girls. We have a pretty diverse team to help meet the needs of our patients, including reconstructive pelvic surgeons like myself, reproductive endocrinologist, pediatric surgeons, pediatric urologists, physical therapists, as well as sex counselors. And again, that's really just to address the individual needs of our patients.

This clinic came about actually after a patient experience where there was a young woman that had a pretty complex GU anomaly that had received a lot of surgical management from infancy throughout her adolescence and then actually managed to become pregnant and had several complications during her pregnancy related to some of the surgeries that she had.

And it actually just amplified or exemplified this need for kind of some transitioning in care for these women that have very complex histories with complex surgical needs. So that was the impetus to develop this clinic to, again, care for young women and girls that have these anomalies, but also be a home for young women who have had surgical management of these complex issues that can cause other problems in terms of their reproductive lifespan, just fertility concerns, obstetric concerns, gynecologic concerns like pelvic organ prolapse or the development of pelvic floor disorders. So that's the history of how this clinic was developed and a little bit about our philosophy and approach.

Melanie Cole: As you mentioned the specialists that are a part of your multidisciplinary and transdisciplinary team, who leads the charge for the care of these patients? How do you all work together to make decisions and treatment decisions for these young ladies?

Dr. Margaret Mueller: That's a great question. So I lead the clinic and assemble the care. And as I mentioned, we have reconstructive pelvic surgeons, pediatric surgeons, pediatric urologists, reproductive endocrinologist, and then a host of ancillary team members like physical therapists, nurse practitioners, and sex counselors.

We'll meet before clinic to evaluate the new patients and develop our preliminary treatment plan of who should be seeing the patients. Oftentimes patients that are coming in with a surgical need will certainly be cared for by the reconstructive pelvic surgeons, pediatric surgeons and occasionally the urologists as well.

But we are also pretty attuned to the needs that are not surgery. So even a woman that is coming in for a surgical procedure, oftentimes the young girl or parents might not have a ton of questions related to the surgery, but really what they want to know is how is this going to affect her reproductive potential, how is this gonna affect her fertility? And that's where we bring in some of our other specialists, like our reproductive endocrinologist, et cetera.

Oftentimes the surgical procedures to manage some of the anomalies to correct them are going to require additional therapy after surgery. So specifically, a lot of times we're teaching vaginal dilation to keep the vagina open or the caliber of the vagina normal to allow for functional intercourse, et cetera, in the future. So that's one of the large roles our nurse practitioners will play in clinic is to actually provide that dedicated vaginal dilation therapy and education to the young woman, girl, as well as her mother or support person that might be, going on this journey with her.

Melanie Cole: Isn't that a comprehensive approach! So tell us about urogynecology and pediatric surgical faculty, how they're working collaboratively to provide this care. What have been some of the benefits of evaluating these young women together?

Dr. Margaret Mueller: Yeah. So I think just the fact that we're coming from different backgrounds has really led to this very rich collaboration. So we see things differently because we've had different experiences and our training is different. So I think that we can come together to solve problems from a couple of different angles, which has been really nice. And we've been able to take care of some very complex patients and offer them really cutting-edge surgical care with this approach.

I'm an educator at heart as are my counterparts, and it's very exciting to work with the different trainees. So working specifically with the urogynecologic fellows as well as the pediatric surgery fellows to develop this relationship and this unique niche, because we're hoping that they will go out after they finished training at Northwestern and they might be developing similar programs, again designed to meet the very complex needs of this patient population.

Melanie Cole: Well, they're certainly learning from the best. So how common is it for you to treat a patient who's already undergone surgery for a complex congenital anomaly?

Dr. Margaret Mueller: The different complex anomalies can really present themselves at different time periods. So there are some very complex anomalies, for example, cloacal exstrophy, a condition where oftentimes an infant will undergo several surgeries in infancy as well as need recurrent surgeries throughout their early childhood adolescence, et cetera. But oftentimes we are seeing some anomalies that are presenting themselves in adolescence around the time of developing periods, et cetera. They might not have been operated on as an infant, but they're being operated on as an adolescent.

I think that we have a unique approach to make sure that the anomaly isn't just managed, but it's continued to be evaluated. So what I can say about that is once we operate on a patient, we're going to be making sure that she is undergoing the appropriate type of therapy to prevent things from happening down the road. For example, to prevent vaginal strictures or scarring in the vagina, which can lead to trouble down the road or addressing the pelvic floor that might be dysfunctional as a result of the surgery that she's had.

So that's our approach. And I can tell you that oftentimes we certainly do see many complex anomalies that, you know, young women that have had multiple surgeries in infancy, and they're coming to us with recurrent problems or some conditions or concerns, for example, fertility concerns or pelvic floor concerns or the need for future surgeries. And that certainly can be something that we see.

Another type of a patient that has previously been operated on that is common for us to see are those young women or girls that are suffering some complications from their previous surgeries. So for example, I mentioned we have a pretty holistic approach to making sure that the vagina stays open after these surgical procedures. And there certainly are scenarios in which we're caring for young women who had been operated on in the early teenage years, but then weren't really shown how to keep the vagina open or dilate to prevent some of the vaginal scarring or stricturing. So oftentimes we're doing revision surgical procedures to best meet the needs of these patients so that they can have a functional vagina for intercourse, fertility, et cetera.

Melanie Cole: Such an interesting program that you have there. So how should a physician determine whether his or her patient is an appropriate candidate for the CARE clinic? Tell us some of the aspects of the clinic that you think are important for referring physicians to know.

Dr. Margaret Mueller: I think that any physician that has a young woman, adolescent or a girl that has any differences in the development of the genitourinary system, those patients are perfect for this clinic, especially if the patient has multiple needs. So I'm really proud to say that we really are able to address all of the needs for our patients. And it is more of a holistic approach.

So we're not just doing one thing at a time. We're not just surgically correcting, for example, a septum. We're going to surgically correct that septum. We're going to get her through this period postoperatively. We're going to make sure that she's plugged into our system for reproductive endocrinology care down the line. Honestly, addressing these concerns up front oftentimes gives the family a lot of just comfort to know that some of these things, they might not actually present a problem, but if they do have a problem, they can be addressed down the line.

Like a really great example for this are our vaginal agenesis population patients. So these are young women that are born without a functional vagina or born without a vagina at all. Oftentimes this diagnosis is made in early adolescents. You know, young girls or family members have a lot of questions about future fertility, what needs to be done, do they need to take hormones or they just need a refresher in anatomy, just in general. And obviously our surgical management really hinges on creating a vagina or a neovagina for these young girls. And while that's something that's very necessary for them as they enter adulthood, I think probably the more pressing question that all of these families have in our experience is how can she build her family? And we have reproductive endocrinology experts that really have a lot of great information to provide them regarding assisted reproductive technology and techniques to help them build their family and present to them there are a lot of different ways to build a family, et cetera.

So I think that if a referring provider has a patient with any difference in development of the genitourinary system, and they really want their patient to receive holistic care, they should definitely come to the CARE clinic.

Melanie Cole: Do you have any final thoughts? Something you'd like to leave us with that would really send the message about the CARE clinic, how much you actually care about these young women and what you're offering at Northwestern Medicine.

Dr. Margaret Mueller: Yeah. So I think we do care and we really want to be a home for any young women, girls, adolescents that have GU anomaly. These anomalies are complex. They affect a lot of different facets in a young woman's life. And we really are able to address all of these concerns that a young woman or her family members may have. So we really consider it one-stop shopping and that destination for a woman that has a GU anomaly.

Melanie Cole: Thank you so much, Dr. Mueller, for joining us today and sharing your expertise. To refer your patient to the care clinic at Northwestern Medicine, please visit our website at urogynecology.nm.org to get connected with one of our providers. That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians. Please remember to subscribe, rate and review this podcast and all the other Northwestern Medicine podcasts. Until next time, I'm Melanie Cole.