Multidisciplinary Care for Children with Colorectal Conditions
Lurie Children's is among the only pediatric hospitals with a specialized and multidisciplinary Colorectal Health Institute for Pediatrics. This team cares for children with colorectal conditions such as imperforate anus, Hirschsprung disease and severe constipation. Learn more from two of the program’s leaders, Dr. Julia Grabowski and Dr. John Fortunato, about how their comprehensive approach to treating children with these conditions stands out.
Julia Grabowski is a pediatric surgeon with a special interest in the treatment of patients with intestinal and colorectal diseases, as well as those with anorectal malformations, including imperforate anus. She also treats newborns, infants and children with a range of conditions including congenital and acquired diseases of the neck, chest, abdomen and pelvis, traumatic injuries, hernias, adolescent breast disease, and she performs prenatal counseling.
Learn more about Julia Grabowski, MD
John Fortunato, MD is Director of the Neurointestinal & Motility Program at Lurie Children's; and Professor of Pediatrics-Gastroenterology, Hepatology and Nutrition at Northwestern University Feinberg School of Medicine.
Learn more about John Fortunato, MD
- Lurie Children’s Colorectal Health Institute for Pediatrics (CHIP) Program is a multidisciplinary clinic services children’ with complex colorectal conditions, such as imperforate anus, Hirschsprung’s disease and severe functional constipation.
- The CHIP team includes a pediatric surgeon, a motility specialist, gastroenterologists, nutritionists, social workers and psychologists.
- There are psychosocial challenges often associated with the conditions the CHIP team sees. The team helps ensure the patient and family get the care they need from that standpoint, in addition to treatment for the condition itself.
- Lurie Children’s CHIP clinic has a unique team approach and access to high-level technology, such as a surgical robotics program, setting it apart from other pediatric colorectal centers in the country.
- The program has in recent years seen growth in referrals from outside of Chicago, Illinois and even the United States.
- Drs. Grabowski and Fortunato monitor outcomes of their patients, helping advance treatment for colorectal condition in kids from a clinical research standpoint.
- Lurie Children’s Pediatric Colorectal Center homepage
- Lurie Children’s Neurointestinal & Motility Program homepage
Julia Grabowski, MD: And one of the amazing things about Lurie Children’s is our ability to have a very high level technology. So like Dr. Fortunato mentioned, we're one of the only places that has anorectal and colorectal manometry. We also have a robotics program and we also have the use of ICG, which can really help in some of these complex conditions
(Host) Prakash Chandran: Lurie Children's is among the only pediatric hospitals with a specialized colorectal center. The multidisciplinary team cares for children with colorectal conditions, such as imperforate anus, Hirschsprung's disease and severe constipation. Today, we're going to learn more from two of the center's leaders about how their comprehensive approach to treating children with these condition stands out.
Joining us are Dr. John Fortunato, Director of the Neurointestinal and Motility Program at Lurie Children's and Professor of Pediatrics Gastroenterology, Hepatology and Nutrition at Northwestern University Feinberg School of Medicine; and Dr. Julia Grabowski, an attending physician in Pediatric Surgery at Lurie Children's, Associate Professor of Surgery at the Northwestern University Feinberg school of medicine at Ann & Robert H. Lurie Children's Hospital of Chicago.
This is Precision: Perspectives on Children's Surgery, the podcast from Lurie Children's Hospital. I'm your host, Prakash Chandran. So Dr. Grabowski and Dr. Fortunato, thank you so much for joining us today. I really appreciate your time. Dr. Grabowski, I wanted to ask you this first question, and I was hoping that you could tell us about the organization of the Colorectal Center And Colorectal Health Institute for Pediatrics also known as the CHIP Clinic.
Julia Grabowski, MD: Sure. Thank you for having me. So within the colorectal center, that is really our surgical center where we focus on patients who have functional and anatomic and congenital colorectal and anorectal disorders. And that colorectal center is organized around the pediatric surgery division with myself as the director, and I have a nurse and nurse practitioner. And then, when we expand to patients who have a little bit more complex disorders or who need motility assistance, we engage with our CHIP Clinic collaborators, and that is folks from the motility clinic, including Dr. Fortunato who's here with us today.
John Fortunato, MD: And just to kind touch upon sort of our multidisciplinary team, which I think is kind of a unique aspect of the program we have, sort of from my perspective and I think from Dr. Grabowski's, is it really is the most effective way to provide clinical care, you know, having this collaborative team effort. And again, from the standpoint of even kind of a higher level with motility in general, the notion of actually having this kind of multidisciplinary team really is meant to sort of break the silos among disciplines or specialties. And so the clinic includes Dr. Grabowski, myself. We have some of our other motility providers and it's this combination of pediatric gastroenterology, surgery, nutrition support. We're trying to increase the presence of social work and psychology support for, again, patients with chronic needs. So it really, again, meant to put everyone in one place at the same time to be able to, you know, collaborate from patient to patient.
Prakash Chandran: Yeah, Dr. Fortunato, that makes a lot of sense. You were talking about this multidisciplinary team that works together. Can you talk a little bit more about how the team approach benefits children and family?
John Fortunato, MD: Couple prongs into this. So first of all, we do discuss patients in advance and it really is kind of our chance to do our homework, get a good understanding of what the individual needs of the patient and family are. So again, are these patients going to be primarily, you know, GI-related or medical management versus that transition to surgery? Are there again psychosocial needs? And I think we all know that, you know, certainly chronic illness and chronic symptoms actually do translate into family and patient stressors. And so we determine which patients need to have that type of support, which patients need nutritional support to really optimize their care. So again, it's team science and I think that's sort of the best way to describe it, is we do our preparation in advance. We have a sense of how we're going to approach the patients. We come to clinic and we see the patient and then we can reconvene afterwards to talk about our more collaborative game plan. So really, it's a nice way of playing together and working again as a team toward care.
Prakash Chandran: And Dr. Grabowski, I wanted to ask, what are the conditions of the children you treat in these two clinics?
Julia Grabowski, MD: Sure. So just like you mentioned when we began, the majority of our patients are born with an imperforate anus or Hirschsprung's disease. And imperforate anus is also known as an anorectal malformation. And that includes patients with cloacal, which is sort of a very complex anorectal malformation. We also see many patients who have severe functional constipation. So that's constipation that we really don't have a reason for. It can be due to motility disorders. It can be due to other underlying anomalies or medical disorders, but that cannot be managed with sort of typical constipation management over-the-counter, sort of run of the mill constipation management. And those are the majority of the patients we see. We also see many patients who have spinal cord anomalies or very complex medical conditions such as cloacal exstrophy.
John Fortunato, MD: And just to add one point that Dr. Grabowski brought up, we see the spectrum of patients from, you know, congenital malformation to even just functional constipation. And I think one of the things that's important in our clinic model is a lot of these symptoms, whether it's not as simple, but just as debilitating as chronic constipation, I think we sort of have that kind of platform to be able to validate, you know, the importance of these symptoms and how disruptive it can be toward quality of life for family and patients. So again, I think it's a validating thing for patients and families to have our whole team really look at this from, you know, several perspectives because either way it's clearly disruptive and causing challenges in children's lives.
Prakash Chandran: So Dr. Fortunato, just to expand on that a little bit, can you talk more specifically about the approach to diagnosing and figuring out a treatment plan for a patient?
John Fortunato, MD: I think in general and as Dr. Grabowski said, there's different conditions we treat. When there is a surgical or anatomic issue, oftentimes, it's a little more cut and dry as far as "Here's the problem," we do some basic assessment and then Dr. Grabowski and her team will be very closely involved. I think other patients, you know, particularly for a condition we call functional constipation where, again, there's not necessarily a clear-cut mechanism underlying it, we try to get a sense really, not old-fashioned, but getting a really detailed history. And one of the things that we do in the motility program as well as in the CHIP program is really putting that concentration into getting a good history. We have several, you know, questionnaires and intake instruments we use in the motility program that help to kind of frame, you know, where the problem is, you know, what are the other what are called potential comorbidities or other associated symptoms.
So really, I think, you know, that is the crux of things, is really knowing your patient and knowing the situation well in advance. Now, when other issues arise, we think about problems such as just defecation disorders, difficulty pooping. We will sometimes bring some of the technology that we use in motility, including what's called anorectal manometry to look at muscle function in the pelvic floor muscles, and basically from where you poop, so to speak. And sometimes when we take it to the next level, when the symptoms or the severity of symptoms really necessitate taking it to the next level. Even from a surgical perspective, we actually will look at the functionality of the colon and other parts of the GI tract with more advanced motility testing.
Prakash Chandran: So Dr. Grabowski, one of the things that I've heard is that Lurie is one of the best places for care for a child with a colorectal condition. What is unique about the Lurie Children's Colorectal Center and the CHIP Clinic?
Julia Grabowski, MD: Well, we certainly think that Lurie's one of the best places for patients who have a colorectal or anorectal condition. I think that what makes it unique is really the integrative approach. So like Dr. Fortunato mentioned, it's not just surgery in one silo and GI in one silo and urology in one silo, we all sort of work together. And the CHIP Clinic specifically is amazing in that it is a clinic every week with two attending providers, a gastroenterologist and a surgeon who together go into the patient's room together and hear the same history and talk with the family and with the patient about what's going on and how we can work together as a team. And I think that's very unique.
Certainly, there are other places that have multidisciplinary clinics, but I think what makes us unique is that we're really they’re hand in hand with the patient with a really true team approach. And one of the amazing things about Lurie is our ability to have a very high-level technology. So like Dr. Fortunato mentioned, we're one of the only places that has anorectal and colorectal manometry. We also have a robotics program and we also have the use of ICG, which can really help in some of these complex conditions that not only have functional disorders, but also have anatomic issues as well. And so surgically, we have a lot of advances that a lot of other institutions do not have. And with that, and with our clinical approach in clinic, I think we really have a unique program.
John Fortunato, MD: And just add one part to that, I think there's an incredible team dynamic that we have. The simple way to put is I think we all play very well together. That includes, you know, both the faculty or nurse practitioners nurses, technicians. It really is a nice interplay and I think that's reflected in how we approach patients. We generally like doing this work together in this partnership. So I think that's reflected in how the patients see us working together and, again, another unique and positive part of our collaboration.
Prakash Chandran: So Dr. Fortunato, you're also the Director of the Neurointestinal and Motility Program at Lurie Children's. Can you tell us what that is and how does it round out care for these patients?
John Fortunato, MD: Sure. So neurogastroenterology, neurointestinal motility, this really all refers to the neurology of the gut. And so that's kind of what we consider ourselves as GI neurologists in a lot of ways. So what we're looking at is sort of the nerve and muscle function and functionality or movement of the GI tract for all intents and purposes. And so it's somewhat described the intestine as having its own little brain as it's been described, because has such a complex nerve system in itself.
And so really, my team and my group deals with conditions that are associated with the poor function or poor motility, meaning for instance, swallowing problems where the esophagus is not contracting or relaxing the way it should or conditions such as gastroparesis where the stomach is not emptying well or the small intestine is not moving food from point A to point B. And of course from the standpoint of what I do in the CHIP Program is colonic motility or colonic movement. And so, really it's looking at this kind of integration between how the nerves affect the muscles in the intestine and how to assess that, how to, again, functionally improve that either medically or surgical intervention.
I think the other part of the program motility in general is we use this term biopsychosocial model of care because kind of like I was saying before, there are clear biologic or pathophysiologic processes going on that need to be cared for, but it does have an impact in terms of anxiety and the psychological ramifications. So we really try to look at it as, you know, brain-gut kind of neurobehavioral health-related field. So it's that's kind of long-winded answer to it to, but it's a complex field. And I think in terms of our CHIP Program, we've been able to focus on a particular area in the colon, but also keeping these other factors in mind as we're caring for patients.
Prakash Chandran: Now Dr. Grabowksi, we've talked about a number of different conditions today, and I'm curious as to how you determine when a child needs surgery for one of these conditions and what does that surgery look like.
Julia Grabowski, MD: That's a very good question. And each condition is very different. So for a baby, who's born with an anorectal malformation. Sometimes that means that they're not born with an anus, and that is pretty clear at the time that they're born and that means that we need to make them an anus and that can be a little bit of a long process. So that's pretty straightforward.
Same thing for Hirschsprung's disease. Those patients are diagnosed with this disorder of Hirschsprung's disease is where they don't have the right nerves to innervate the colon. And so that piece of the colon needs to be taken out. And those are relatively not obvious, but it's very clear what sort of operations those kids need.
When we get to the more severe functional constipation patients, that gets a little bit more complicated. And some of the operations that we offer those patients include a cecostomy tube placement or Malone procedure. That's where we can do an operation to give them an opportunity to do an enema in an antegrade fashion. That means instead of doing an enema through their bottom, they would put the enema solution somewhere higher in their colon. And that can really facilitate the process of emptying the colon. And in some patients, they really just can't use their colon at all. And we either have to take it out or divert it for a while with an ostomy, which is where they would poop into a bag for a while. And then we do some rehab of that colon and either put them back together or, as I said, take out that piece.
So it really depends on what their underlying condition is and what would best facilitate, A, their overall health and, B, their overall quality of life. So we do a lot of different operations. And it really is very personalized to the patient's specific condition.
Prakash Chandran: So Dr. Fortunato, we've talked, you know, in detail about the Lurie Children's Colorectal Center and the CHIP Clinic and the multidisciplinary approach. Can you talk to us broadly about how the program is growing and expanding?
John Fortunato, MD: Yeah, I think it's been growing, I think Dr. Grabowski would agree, almost exponentially. I think as we've seen more patients, our sort of catchment area of referrals has grown. So we see patients of course, in the metropolitan, the Chicagoland area, Illinois, but we do have referrals from, you know, from coast to coast now in California and New York, southeast. And a lot of it I think is sort of predicated on the idea of having this kind of unique model. Not just, you know, two separate services, surgery and GI just sending patients back and forth. We've had a few international referrals now and I think, you know, from the perspective of program growth, we're proud to say that both of our teams have collaboratively submitted a research abstract recently to our national organization that we'll be presenting next month. So again, another example of how we're getting the word out in terms of actually not just caring for patients, but learning from the patients we see to try to do things better. And that sort of starts the word on the street, sort of gets out there, so to speak that we're doing this, that we're monitoring outcomes that we're really looking at this model, not just on a clinical basis, but also, you know, from a clinical research standpoint as well. And so I think as that grows, as your team puts into the scientific literature, I think the program starts to grow sometimes faster.
Prakash Chandran: So I'm really curious about both of your backgrounds. You know, I don't think that often patients get the chance to learn a little bit about why you became an expert in the area of medicine that you are. So, Dr. Grabowski, why don't we get started with you? Tell us a little bit about your background.
Julia Grabowski, MD: Sure. Well, I went to college and then I went to medical school and then I did a general surgery residency. And during general surgery residency, I sort of always knew that I wanted to do pediatric surgery, but it's quite a long road. Nonetheless, I persevered and did my pediatric surgery fellowship in Pittsburgh. And after that, within pediatric surgery, you know, pediatric surgeon is truly like the master of all domains. We operate on every part of the body. So most people early in their career in, I was one of them, really does everything and starts to find what clicks, what research they enjoy, what patients they enjoy, what operations they find really draw them in. And when I got to Lurie in 2015, I really realized that the colorectal population was something that I really enjoyed. I liked the operations, I liked the patient population, and I really liked that for many of these patients, we meet them the day that they're born and, I guess, I'll see them until I retire, which is a really, truly amazing part of the job. And so when I decided that this was something that I was truly interested in, I got really engaged nationally in some of the consortiums, as well as reaching out to other interested folks within the field. We have a lot of collaboration with other centers within the United States and really sort of dug deep into the research and to learning as much as I could about colorectal and anorectal conditions. And then, when we really solidified the CHIP Program, that's when it took on a life of its own. And I found friends within the GI department, really solidified my interest within the Division of Pediatric Surgery and became a leader at Lurie in this area. And now, I'm just thrilled to have the position that I have.
Prakash Chandran: Yeah, that's fantastic. Thank you so much for that detail, Dr. Fortunato. I'd love for you to share the same.
John Fortunato, MD: Sure. My story's just a little bit less common or a little bit more unusual to put it mildly. So I actually trained for six years in general surgery before I went to pediatrics. And I decided toward the end my training that I had more of an interest, number one, in pediatrics and, number two in research and even in clinical care. And so, it was a monumental career change. I actually went to Johns Hopkins to do my pediatric and gastroenterology training. And that's sort of where the motility became involved. In that Johns Hopkins had a large GI population, but also has a feeding and rehabilitation program that really necessitated more functional mapping of motility in their patients. And so, because of that, we were more curious about the neurology of the gut. And I found it really required less of a black and white approach in the sense that it was thinking outside the box for conditions that were not well-described.
And so I think in some respects, the sort of objective surgical part of my life, I was able to kind of translate that into some objective parameters for motility. And as time grew and the research became more of an interest of mine, one thing led to another and there I was from general surgeon to neurogastroenterologist. And I think, you know, the nice thing about it is, again, even in the clinic model that we have, I think, we had this mutual respect for each other in the sense that I've been not as long as Dr. Grabowski, but I've been on the surgical side of things, and I appreciate the things that go into consideration from that end. And so I kind of like that unique perspective in the sense that we can really work together. And I understand some of the challenges on both sides of the fence, which I think makes it interesting. I do keep up my adult skills. I'm actually a flight surgeon with the Air Force part-time, that's actually where I'm heading this afternoon as a matter of fact, again keeping with that complexity of my career path. But I think sort of, again, all those things, I think, kind of bring together an interesting perspective on how to approach patients and maybe thinking about things a little bit differently than someone else might.
Prakash Chandran: Yeah, there's no question about it. You know, one of the other things that I see here is that you both do research together. Dr. Grabowski, can you talk just broadly about what that looks like?
Julia Grabowski, MD: Sure. You know, people do research on all sorts of things within colorectal and GI. And so we wanted to focus a little bit more on how our overlap is. So one of the things we focused on recently is some of the patients that we have placed cecostomy tubes in, as I mentioned before, that's where you do an enema from above. So, put a little tube into the colon or make a little way for a tube to go into the colon and patients do enemas from above. And one of the things that we were wondering is what within our patient population makes them successful. What are we doing that makes them have success and either be clean and continent with that, or get off those enemas. And so we looked at our patient population and looked at all of the very sort of granular detail about aspects of their preoperative workup, their postoperative care, some of their demographics and things along those lines to see what we could do to figure out why are we having such great success and how can we tell the rest of the world about that? And also how can we make every single patient successful? So that's one of the most recent papers we have been writing, one of the abstracts we'll be presenting.
We also published about our experience in doing procedures in the operating room together. So a lot of times patients will have one procedure with GI and then realized that they need something else with surgery or something with surgery, and then realized they also need some other procedure by GI. And so we looked at our experience in doing procedures together in the operating room and how that can improve the patient experience, improve quality of life for the patients and also give us a little bit of more information because we're doing it together. And those are some of the most recent works that we've worked on together that we're pretty proud of.
John Fortunato, MD: And just to piggy piggyback off that a little bit, you know, not to say that every patient has to be a study patient, you know, but it's kind of incumbent upon us to learn from patient outcomes. And so one of the things that I think will be continuing to develop over the next few years is our clinical registry. The motility program actually has, I think, one largest motility registries in the country now where we have over 400 plus patients participating. We also have subgroups that actually look at constipation and again bowel management-related patients, but there's so much to learn from all this as far as how do you improve quality of care outcomes?
And so I think that's the exciting part, is we've learned even just from looking at some of our patients in the past how we cannot just tweak things, but maybe improve upon things. And so that's kind of the fun part of what we do. So I really anticipate that growing as this program continues to grow.
Prakash Chandran: Yeah. So you kind of touched upon sometimes where you were doing procedures in the operating room together. And it made me think of just something I want to close on. Dr. Grabowski, I guess we'll start with you. Can you tell us about a time in the OR or clinic that reminds you of why you do what you do and what fuels your passion for this line of work?
Julia Grabowski, MD: Sure. Well, Dr. Fortunato, knows as well, I have a patient that we have known since the CHIP Clinic began when he was about six years old and he came to us sort of struggling with constipation after an operation for anorectal malformation. And he has been hospitalized multiple times with I impactions, he needed an operation to get a stoma, he needed an operation to get part of his colon taken out. And I've seen him every three months since I started at Lurie. And now, he is continent. He is doing well. He no longer needs cecostomy flushes. And every time I see him in clinic, he gives me a giant hug and I get so excited when I see that he's coming to clinic, because I know that he gives me so much joy. And I know that we have helped him. He appreciates it and he is just a joy patient to have. And he is one of the reasons why I love my job.
Prakash Chandran: I love it. Dr. Fortunato, what about you?
John Fortunato, MD: Yeah, I think just to go with the theme of patients I've been taking care of for a while, there's a patient I've been taking care of for now 17 years who was effectively an infant and now starting college. And she and her family have kind of followed when I moved to Lurie. You know, again, we're working together in the operating room, this is a patient that's been complex for a number of years. I really have kind of valued having Dr. Grabowski involved, because I think it made a huge difference in terms of us working together, making decisions real time in the same place. You know, for me, to have a patient that long means I may be getting old but I think it's something that Working together like that really, I think, has really added value to caring for this patient, has now resulted in a, you know, young woman who is in college, you know, doing well. And like I said, that's to me, just very satisfying that I was able to kind of work in partnership and talk to my colleague, get an opinion. And just when you see the outcome of that, like what Dr. Grabowski was saying with a patient we're taking care of for years who is successful, they're doing well in life now. Yeah, it's very gratifying. And we do take care of patients that we've taken care of for less than, you know, 17 years, but I found that this care really sort of took off more by the two of us working together. And that was just very satisfying. I think the family appreciated it and I think both of us are kind of proud of our work mutual together.
Prakash Chandran: Well, Dr. Grabowski and Dr. Fortunato, I think that is a perfect place to end. Thank you so much for your time today.
John Fortunato, MD: Great. Thank you for having us.
Julia Grabowski, MD: Thank you for having us.
Prakash Chandran: Thanks for listening to Precision: Perspectives on Children's Surgery, the podcast from Lurie Children's Hospital. To learn more, you can go to luriechildrens.org or to make an appointment, you can call 1-800-KIDS-DOC. That's 1-800-KIDS-DOC. My name's Prakash Chandran. Thanks so much for listening and be well.