Melanie Cole, MS (Host): Welcome to Better Edge, a Northwestern Medicine Podcast for physicians. I'm Melanie Cole, and we have a panel for you today with three Northwestern Medicine physicians here to highlight the Collaborative Advanced Reconstructive Evaluation or CARE Clinic at Northwestern Medicine, a multidisciplinary approach to reconstructive treatments for congenital anomalies.

Joining me is Dr. Julia Geynisman-Tan, she's an Assistant Professor of Urogynecology and Reconstructive Pelvic Surgery in the Department of Obstetrics and Gynecology at Northwestern Medicine; Dr. Julia Grabowski, she's an attending physician in Pediatric Surgery at the Ann and Robert H. Lurie Children's Hospital of Chicago, and she's an Associate Professor of Surgery in the Department of Surgery at Northwestern Medicine; and Dr. Elizabeth Yerkes, she's an attending pediatric urologist at the Ann and Robert H. Lurie Children's Hospital of Chicago, and a Professor of Urology in the Department of Urology at Northwestern Medicine.

Doctors, thank you so much for joining us today. This is going to be a great discussion. Dr. Geynisman-Tan, I would like to start with you. Tell us a little bit about the CARE Clinic. What specific congenital or acquired conditions do you specialize in and treat?

Dr. Julia Geynasman-Tan: Sure. Thank you so much for having us. And I do want to highlight, I mean, the reason this clinic exists is really a collaboration between Northwestern Medicine and Lurie Children's Hospital. And so, I'm really excited that my partners are here to kind of talk about this collaboration.

The CARE Clinic takes care of women and girls across sort of a wide age range. Some of whom are, you know, early in their adolescence, you know, and just actually entering adolescence probably in 10 to 11 year olds, and then all the way up through adulthood, because we take care of some conditions that kids are first finding out about as they enter adolescents, things like vaginal septums or blockages of the vagina or sometimes of the cervix. And then, oftentimes, we take care of girls a little bit later into their adolescence when they are trying to understand why they're not getting periods. And we take care of conditions like uterine or vaginal agenesis, that they're really understanding at that point. Those are all congenital anomalies or abnormalities.

And then, a large part of our population are kids who were born with much earlier diagnosed congenital conditions like cloacal or bladder extrophy, and underwent the appropriate repairs for those things, you know, really at infancy. And then, as they develop into their adolescence, they have different goals, you know, goals that have a lot to do with their body image, their sexual function, menstruation, you know, other things that they need to function as well as their bladder and kidneys needed to at the beginning of life. And so, we bring this team together to make sure that we can reconstruct or create a functional vaginal canal for those individuals.

Melanie Cole, MS: What a comprehensive clinic. And Dr. Grabowski, can you please expand on the roles and expertise of the key physicians on the team?

Dr. Julia Grabowski: Sure. We're actually a group of four. Our fourth member is in the operating room as I speak. I am Julia Grabowski. As you mentioned, I am a pediatric surgeon, so I trained in General Pediatric Surgery. And my niche is anorectal and colorectal conditions. So, that is my area of expertise within Pediatric Surgery. And so that brings me in from a colorectal standpoint in kids who are born with some of the pelvic anomalies associated with that. Dr. Geynasman-Tan here is a urogynecologist, so she comes from a little bit of a different angle. So, she has training in Gynecology and Urogynecology and really is focused on some of the reconstructive aspects of that area. Dr. Yerkes is our pediatric urologist who takes care of infants, babies, and children who have urologic anomalies, some that they're born with, some that are acquired. And then Dr. Elborno is our Pediatric and Adolescent gynecologist who really helps us deal with some of the issues with menstruation, ovarian function in some of these patients, managing menstrual suppression, as well as some of the key aspects of Gynecology in the adolescent population as well as the young adults. And we all worked together. And that's a bit how the clinic got started is that we each realized that we had these patients who really needed the expertise of other folks. And together, we could really provide them comprehensive care.

Melanie Cole, MS: Well, it's such a multidisciplinary approach and you all have such unique specialties. Dr. Yerkes, how does the clinic's multidisciplinary approach really benefit the pediatric patients specifically? Because it really is very unique.

Dr. Elizabeth Yerkes: It is very unique. We do have a lot of amazing multidisciplinary work that's going on in the clinic. As Dr. Geynisman-Tan said, we have the whole range of patient ages. Many of them come from what you would consider the pediatric pipeline. And Dr. Grabowski and I have been working for years on these patients first trying to keep their bodies together, and then manage their urinary function and their bowel function and protect their kidneys. And as they mature, they have different needs. And some of those, we've been caring for and are capable of caring for, but having a more holistic approach with our whole team. Dr. Geynasman-Tan and Dr. Elborno have expertise in more of the adult perspective or gynecologic perspective. And we just have a lot to offer as a team.

So when we see the patients together in the office, we've already talked about them prior to going into the room, and then we're each able to lend our expertise and experience for the patient and their family. And I think that's particularly important for the pediatric patients where this is all completely new information, very foreign for them. And I think it's nice to have all of us there to read the room and read the needs and what's being understood with this brand new material.

So, I think it's very helpful for the pediatric patients to have both sides of the specialty, pediatric and adult, representing.

Dr. Julia Geynasman-Tan: I think that's so true. I mean, I feel like oftentimes when I first read about a patient who's coming in to see us, I have my own sort of bias lens from the adult world. And I don't even consider some of the questions that you guys bring up. And I've learned so much from this clinic in just seeing the way that you approach younger patients and an understanding of surgical history that they would've had that is just so far outside my realm of understanding. And I think that this collaboration really makes for a seamless transition for those patients. It's really nice.

Dr. Julia Grabowski: I'll add that. I think something that's really unique about our clinic is that patients aren't just coming in to see me in one room, Dr. Yerkes in another room, Dr. Geynisman-Tan in another room. We go in together as a team so that we all can have the conversation together and hear each other, speak about what our plans are, what our goals are, and the patient hears us interacting as well, so they know that they're really getting a comprehensive approach to their issues.

Melanie Cole, MS: I couldn't love the name CARE Clinic anymore, if I'd come up with it myself, because really, especially when you're dealing with pediatric patients, as you say, that is just such a passionate and caring way to help these pediatric patients. And Dr. Geynisman-Tan, how does the CARE Clinic ensure that continuity of care for these patients with complex needs? And why is this continuum of care just so important for them?

Dr. Julia Geynasman-Tan: Yeah, of course. I mean, I think that the fact that we have this clinic, and that it bridges two hospitals that are, you know, physically co-located and where we share records between the two makes for a really seamless transition for a lot of our patients. Like Dr. Yerkes was saying, I mean, a lot of them have come from pediatric clinics, and we can see those records. But then, we also might send them for pelvic floor physical therapy over at the Northwestern Medicine Hospital. We might end up doing surgery on them, either at Lurie Children's or at the, you know, adult hospital, depending on what their needs are, what kind of anesthetic plan they need, and what sort of, you know, hospitalization or follow up they might need.

And so, having both of those worlds within one building is really wonderful. And I think that we all have developed our own teams sort of through our other work, whether that's amazing nursing teams or psychologists or social workers or people that we can bring in to really make sure that the overall care for these patients is complete.

You know, I know Dr. Yerkes and Dr. Grabowski have worked a lot with the DSD clinic, which has wonderful psychologists and social workers associated with it. I spend my days working side by side with pelvic floor physical therapists that take care of so many girls and women with, you know, pelvic floor dysfunction as a lot of our patients have with these conditions. And so, we're able to kind of bring those teams together into one more cohesive unit.

Melanie Cole, MS: Dr. Geynisman-Tan, I'm sticking with you for a minute.

Dr. Julia Geynasman-Tan: Oh, boy. Okay.

Melanie Cole, MS: We certainly know that when there's pediatric patients involved is such a scary time for the patient, but more so even for the parents. I mean, we all know how parents are, right? So, tell us a little bit about the support services that are available for patients and their families that are undergoing treatment at the clinic, because I feel that's just one of the most important parts of what you guys do.

Dr. Julia Geynasman-Tan: Yeah. Well, I think that the biggest support that comes from this clinic comes from the fact that we treat this to some extent, like a concierge practice. I think all of us care so deeply about these patients and these conditions that we have a personal relationship with each of these families. You know, I think all of us know them well. We reach out to them personally. There is one nurse that works with this clinic, and one sort of scheduler who is really intimately involved in the process.

And so, I feel like a big part of what challenges parents and families is negotiating the complexity of the healthcare system and 20 different phone calls from different people with conflicting information. And none of that happens in this clinic. You know, it's really just the four of us truly who are communicating with these patients, which is great.

Dr. Elizabeth Yerkes: I would just add, as you mentioned before, we do have, you know, pediatric psychologists that are available to these families. They're not there in the clinic with us. It's more on an as-needed basis. And sometimes these families do have a very difficult time coping, but also just understanding. You know, we try very hard to present in an understandable fashion, not medicalizing this and helping kids understand that they're not alone with this new diagnosis. And I think that that is very helpful for both the patient and for the parent to see. But if they need the additional support, we have pediatric psychologists too to assist them.

Melanie Cole, MS: Such a compassionate and supportive environment. I can tell that. And Dr. Grabowski, how does the CARE Clinic integrate research into its clinical practice? And are there opportunities for patient participation in these clinical trials?

Dr. Julia Grabowski: Yes. Thank you so much for that question. We are academic physicians, so we're very passionate about research and want to make sure that the research that we're doing within our clinic and within our interests are very meaningful. And so, as we've moved through this clinic, we've realized things that we can help not only our own patients, but other patients throughout the country and the world, regionally, nationally.

And so, one of the things that we've done is developed a new technique for vaginoplasties. And we started doing that about five years ago. And as that technique has evolved, we started doing research on patient outcomes, allowing patients to fill out questionnaires to let us know how they're doing and how we can tweak their experience with this new vaginoplasty technique. We also have quality of life questionnaires to ask them about how they're doing after seeing us in clinic, after certain procedures that we're doing in terms of sexual function, urinary function, bowel function, so we can make sure that, as we develop, developing in a way that is patient-centric.

And most recently, we've gotten a grant to start biopsying some of the new neovaginas that we make with our new technique to make sure that we are able to follow what some of these cells look like and optimize how we're doing the procedure. And we invite patients to ask questions about our research, to participate in all the research projects that we have. And we think that sharing this research with our other colleagues in these fields is really important.

Melanie Cole, MS: That's really cool, and it's a pretty exciting time in your field with these kinds of developments. Dr. Yerkes, I'd like you to share some success stories with us today, or notable cases that highlight the CARE Clinic's impact on patient outcomes and patient care.

Dr. Elizabeth Yerkes: Thank you. That's a great question. We have had a number of really wonderful patient experiences that are very memorable. We think they all highlight the expertise and experience that each of us bring to the team. You know, we've mentioned some of the different diagnoses we see. Well, we may see a young girl who's barely started puberty. And all of a sudden she finds out that she's having pain, and it's because her periods are blocked. And you have a bunch of people you've just met who are telling you needing surgery in order to open that up. And that's a lot to digest.

And so, I think seeing over time how we respond to, you know, anxiousness they may have about the diagnosis and helping counsel them about different options and timing and the post-care has been very heartwarming, if you will, to see in our group. and likewise, a young woman who hasn't had her period and has now been to several different providers and has learned that they don't have a uterus or perhaps don't have a uterus, and we're going to confirm that for them. So, they're learning that they won't have a period and they won't carry a pregnancy naturally. And you can imagine how that's feeling to both them and their parents. And so again, being able to be there for that group. And although those are very uncommon conditions, they're very common for us, and we're able to share with them that they're not alone.

And so as common as those situations have become for us in the clinic, we have the very unusual sorts of patients. We take care of some very complicated children when they're young. But we've met several adults who have equally complex anatomy that has really not been repaired or has been partially repaired and they've been walking around just managing it in their adult life. And then, things start going differently, or they have a change in their priority, their priorities in life and come in seeking help. And so, that's when I think our team really shines to be able to, you know, meet this individual, explain to them their internal anatomy, explain their options for urinary function, explain kidney health, explain bowel options, and then tackle the part that the clinic is really all about, about reproductive options, options for a functional vaginal canal. And I think it's been very rewarding to have several of those patients that we're able to help, but also professionally satisfying as well. Because there are things where we sometimes have to scratch our head and say, "Okay, not everybody is the same. And how are we going to help this patient?"

Dr. Julia Geynasman-Tan: I think we have so many stories and, you know, part of why it's hard to hone in on one is because each of these cases is so unique. I almost, feel like telling any person's story almost gives away who it is. I mean, because truly no two are exactly the same. But I think that, you know, there are cases that we all think about as being really memorable, particularly of reoperations, you know, of patients who have had some form of surgery done at other hospitals or sometimes in other countries or places where, you know, maybe people didn't offer them the full breadth or scope of what might be available. And then, they come to us and we've, you know, been able to do something new and different, or at least really change what that surgery meant for their lifelong, you know, recovery and their function.

And I think we have so many patients who, you know, call us back or send us messages and say like, "I am, you know, happily married now. I have a partner. I'm able to enjoy intercourse" or, "You know, I had pain for years because of this blockage that nobody, you know, could tell me what was happening. And now finally, I don't have pain anymore." So, I think that there are just so many wonderful stories from this clinic.

Melanie Cole, MS: Agreed. Isn't that why you all do what you do? For just that exact reason. And it really is just a wonderful clinic. And Dr. Grabowski, speak a little bit about the typical referral process and criteria for patients to be seen at the CARE Clinic. What's involved?

Dr. Julia Grabowski: That's a great question. Many times, practitioners throughout the area will reach out to us individually and ask us a question about a patient who has some anatomic situation that they might not understand, tell us a little bit about it. And we'll say, "Yeah, that sounds like someone who could come to CARE Clinic." And then, they call our scheduler and are able to be added on into the clinic.

Then, there's also patients who are able to find us through the Lurie or Northwestern website. And we will see anyone at any age. And they just have to call our clinic and explain a little bit about what the question or diagnosis is so that we can make sure that we're not wasting their time if they're coming to the right or wrong place. We'll go through their charts. We'll make sure that we have all the imaging that we need requested from wherever it is that they're coming from. And then, they come to our clinic. We see them all together one Friday morning, and then work from there.

Melanie Cole, MS: Dr. Yerkes, what collaborative opportunities does the CARE Clinic offer for other healthcare providers and for other specialists?

Dr. Elizabeth Yerkes: I think there's a lot of opportunities within the greater Northwestern system for many specialists to interface with our team. As we mentioned, many of these patients have very complex anomalies and have been leading complex lives and may have already engaged with a gastroenterologist, for example, or a kidney specialist.

And so, there will be opportunities for us to partner together in caring for these patients ongoing. Many of our patients will have some interest in working with Reproductive Endocrinology for, creative solutions for fertility, if that's not something that can be natural for them. And so again, just based on the complexity of the patients, we certainly welcome collaboration with other specialists.

Dr. Julia Grabowski: I'll also add that there are many specialists in Pediatric Surgery, Gynecology and Urology throughout North America, who have heard about some of the techniques that we have developed and are interested in bringing their patients to Lurie or Northwestern, to do the procedures with us, to learn how to do the procedures and to have us help them take care of their patients.

Melanie Cole, MS: Dr. Geynisman-Tan, I'd love to give you the last word. What would you like the takeaways to be, the key message about the CARE Clinic, what you would like other providers to know about the amazing work that you're doing there at Northwestern Medicine?

Dr. Julia Geynasman-Tan: Well, thank you. I think that what's really unique about this clinic is, you know, as we mentioned earlier, no two of these cases are truly alike. And what makes this so unique is that we may not necessarily have all of the right answers or all of the, you know, kind of perfect flow for each patient. But because we are such a collaborative team and all of us intersect in so many other ways with other, you know, professional groups or expertise in our lives, we will figure it out together, right? Whether it's, you know, kind of creating a new procedure for this patient or finding some new combination of medication that suppresses her periods, you know, until she's ready for surgery or kind of, you know, I'm thinking of a patient I just talked to today actually from this clinic, who has a very unique and complicated anomaly and who we've sort of had to negotiate the difference between the most effective way to treat her urinary incontinence and the safest ways, you know, for her. And we all sort of come together and figure out what is best while keeping the patient's goals in mind.

Melanie Cole, MS: Thank you all so much for joining us today. What a great episode this was. And thank you for sharing your expertise and so much information on the CARE Clinic at Northwestern Medicine. Thank you again. And to refer your patient or for more information, please visit our website at breakthroughsforphysicians.nm.org/obgyn to get connected with one of our providers. That concludes this episode of Better Edge, a Northwestern Medicine Podcast for physicians. I'm Melanie Cole. Thanks so much for joining us today.