Effective Clubfoot Treatment with Rebecca Carl, MD and Romie Gibly, MD, PhD

Specialists within Lurie Children’s Clubfoot Treatment Program are changing the lives of children born with clubfoot and other congenital limb deformities, through gold standard care that starts soon after birth. In this episode, Dr. Rebecca Carl and Dr. Romie Gibly, both attending physicians in the Division of Orthopaedic Surgery and Sports Medicine at Lurie Children’s, explain the timeline of treatment, handling of complications and the long-term outcomes of patients who undergo clubfoot care at Lurie Children’s.

“We have a very comprehensive treatment approach with lots of colleagues who can take care of every issue…We expect that children will have active, healthy lives and not be limited by issues with their feet.” 

Rebecca L. Carl, MD 
Attending Physician, Division of Orthopaedic Surgery and Sports Medicine 
Associate Professor of Pediatrics, Northwestern University Feinberg School of Medicine 

“I spend a lot of time reassuring parents that it's going to be okay, that clubfoot is not a permanent disability type of diagnosis. It's something we can and do manage … ​​we'll take care of it. At the end of the day, your child is going to run around and play sports and go to school and drive you just as crazy as if they did not have clubfoot.” 

Romie Gibly, MD, PhD 
Attending Physician, Division of Orthopaedic Surgery and Sports Medicine 
Assistant Professor of Orthopaedic Surgery, Northwestern University Feinberg School of Medicine 

Show Notes 

• Clubfoot is often detected during pregnancy around 20 weeks when obstetricians conduct routine ultrasounds to scan for various issues with a fetus.  
• The word “clubfoot” can be confusing. It simply means the relationship between the foot and the ankle is not typical, often leading to the foot curling inward. Despite popular misconceptions about clubfoot, the condition is quite easily remedied.  
• The Ponseti Method has been the gold standard for clubfoot treatment for about 25 years, replacing an almost universal surgical diagnosis. It consists of a series of plaster casts, braces, and a tiny incision called an Achilles tenotomy. 
• Treatment usually begins around two weeks old, or when the baby is around 7 pounds. Earlier treatment is preferred in order to not interfere with normal infant development. 
• Most babies experience little to no pain during treatment, with the most discomfort being occasional irritation, including skin irritation, from wearing plaster casts. At the same time, many children grow very accustomed to wearing the required equipment.  
• Clubfoot can also be the result of other more serious conditions such as spina bifida, cerebral palsy, or arthrogryposis, and can require more complex treatment in such cases. 
• Drs. Carl and Gibly prioritize reassuring parents that clubfoot is not a permanent disability and that their children will likely live completely normal lives.  
• Most cases of clubfoot can be resolved by around age four or five. However, occasionally there can be reoccurrences, especially for those not treated properly from the start. 

Transcript

[00:00:00] Erin Spain, MS: This is Precision, Perspectives on Children's Surgery from Ann & Robert H. Lurie Children's Hospital of Chicago. I'm your host, Erin Spain. On this podcast, we introduce you to surgeons at one of the country's most renowned children's hospitals to find out how they're transforming pediatric medicine. The team of care providers within Lurie Children's clubfoot treatment program are changing the lives of children born with this common congenital birth defect, allowing most to enjoy a healthy childhood without a trace of the condition. Two experts on clubfoot from the program joined me today to explain how they treat the condition. Dr. Rebecca Carl and Dr. Romie Gibly are both attending physicians in the Division of Orthopedic Surgery and Sports Medicine at Lurie Children's. Welcome to the show. 

[00:00:57] Rebecca L. Carl, MD: Absolutely. 

[00:00:58] Romie Gibly, MD, PhD: Thank you. It's nice to be here. 

[00:00:59] Erin Spain, MS: There may be some parents out there that experienced some alarm when they hear this term clubfoot. And that might be based on misconceptions about this condition. Dr. Carl, can you start us off today by explaining what clubfoot is, and how you're able to diagnose it? 

[00:01:17] Rebecca L. Carl, MD: One thing I think that creates a lot of misconceptions is actually the term clubfoot. When I heard that term for the first time, I sort of envisioned this medieval weapon, like a mace, that the foot would be some horribly deformed foot. And that's not what it looks like at all. Babies who have clubfoot, they have cute little feet like all babies do. They generally have a pretty normal shape of the foot. It's just the relationship between the foot and ankle is not typical. It needs to be fixed. I think another misconception is that children with clubfoot will have lifelong disability, but with our current treatment of clubfoot, we now expect children to be healthy and active, and not have a lot of limitations in terms of types of sports that they play and their ability to walk long distances and run and keep up with their peers. Women often have an ultrasound done at 20 weeks to look for all types of different problems, problems with the heart and problems with the spine. And often incidentally, the obstetricians can see clubfoot at that scan. It's fairly accurate. Sometimes the ultrasound will show what looks like clubfoot, but babies end up being born and the feet look normal. And then sometimes the feet look normal and babies end up being born with clubfoot, but it's pretty reliable. So it's often picked up prior to babies being born. If that's not the case, though, it's immediately recognizable when children are born. 

[00:02:25] Erin Spain, MS: And the good news is there is a gold standard Method, the Ponseti Method, which you're able to use through a series of plaster casts to gently manipulate the baby's feet into a normal position. Tell me a bit more about this Method. Dr. Gibly? 

[00:02:41] Romie Gibly, MD, PhD: Sure. This was developed, initially by Ignacio Ponseti at the University of Iowa. Dr. Carl actually knew him. I was trained through one of his trainees, Vincent Mosca, who is a leader in pediatric foot and ankle in Seattle, Washington. The Ponseti Method has certainly been the gold standard I would say for at least the last 25 years, pretty much internationally, although it was developed as early as the 50s. It was a big paradigm shift in the treatment of clubfoot in sort of the modern era. Prior to the Ponseti Method, clubfoot was almost universally a surgical diagnosis, which is to say that those children would have a large corrective surgery to try and get the foot into a correct position. It involved large incisions, a lot of scarring, and repositioning of many of the bones of the foot. And this did work pretty well to get a foot that pointed forward, but can create a lot of issues with growth, arthritis, and scarring that may make that foot not as durable in the long term. And multiple studies have at this point gone on to show that long term clubfoot treated with the Ponseti Method tend to be more flexible and more comfortable and more functional than those we used to treat through surgery. And so it, it's been a huge paradigm shift for us, taking something that was almost 100 percent surgical to something that is managed primarily with casting and occasionally small surgical, additional procedures, but those surgical procedures are on a whole different scale than what used to be done. 

[00:03:59] Rebecca L. Carl, MD: I would say I met Dr. Ponseti twice. He used to do an annual clubfoot course, and he was just a very lovely, animated, passionate person. It was really a privilege to get to meet Dr. Ponseti and hear a little bit about his philosophy and learn from him, you know, a person who made many incredible contributions to the field of pediatric orthopedics. 

[00:04:17] Erin Spain, MS: Dr. Carl, take me through the timeline for a healthy baby that's born with clubfoot. When would you start doing the casting on their legs and feet? 

[00:04:25] Rebecca L. Carl, MD: So usually we start children around two weeks of age and we have them come and see us weekly. for serial casting. And serial casting just means casts in a row, in a series. And so those casts are very much like if you broke an arm or a leg, you would have a cast that keeps that limb immobile. We place a cast on the leg that goes from the tips of the toes up to the thigh. We use a fairly old fashioned casting material, plaster, because it molds really beautifully like clay. And then we have children come in weekly and we change those casts. And usually that takes about five or so weeks to bring the foot from being pulled to the inside to being rotated to the outside. And after that, the vast majority of children will need a small procedure, the Achilles tenotomy, which is a teeny tiny procedure where a cut is made. It's the size of the cut is similar to a size of a cut you would need to cut a single strand of spaghetti. And that's done with children awake generally and with local anesthetic with a numbing shot. And then after that, children go back into a cast for about three weeks. And then we transition them to a brace, that is two shoes connected by a metal bar. And we think of that brace like the retainer. So I always say, you know, you go to an orthodontist and your teeth get straightened and they look really perfect, but there's a catch. You have to wear a retainer to keep the teeth straight. And that's sort of how we think of clubfoot after the two or three months of treatment, you need to wear a retainer for a fairly long time. The brace is worn three months full time, and then we wean the children so that they're wearing it at night until they're about four to five years of age. That sounds like a lot. I think that's part of the treatment that's very intimidating to parents, but we always say, you know, the brace, it's like part of your pajamas. So if a child has clubfoot instead of saying, let's put on your PJs and read a book, it's put on your PJs, put on your boots and read a book. And we have children who don't really understand that that's not how all kids sleep. They just think, yep, this is part of my PJs. When they're tired, they go and bring the brace to their parents. We've had kids where I had a family tell me that they went to the Wisconsin Dells without their brace and their child was so upset that they almost drove home to go get it. So, kids get really used to wearing it and bulk of the treatment is done a lot sooner than that. 

[00:06:19] Erin Spain, MS: Tell me how you both handle a case and how you might split responsibilities of caring for these patients.

[00:06:25] Romie Gibly, MD, PhD: We both do Ponseti style casting. We are certainly also not the only providers at Lurie Children's, but we are probably the two highest volume providers for clubfoot care at Lurie Children's. And so patients find us, either through referrals from their obstetricians, pediatricians, or through the Chicago Institute for Fetal Health at Lurie Children's ,and so we do sometimes meet those families preoperatively after their ultrasound identifies a clubfoot. And sometimes we meet those families after the birth of their child. Oftentimes who they end up with has more to do with geography than anything else. Since there are a large number of visits to see us in the first few months of life, being close by is pretty helpful. Long-term in terms of surgical intervention, then Dr. Carl's team often reaches out to me or one of my partner surgeons for the clubfoot patients that end up needing additional surgical interventions. 

[00:07:12] Erin Spain, MS: It's something parents listening might be worried about is any pain that could be associated with the Ponseti Method. Dr. Carl, can you talk about that a little bit? What do we know about the pain involved for the baby? 

[00:07:25] Rebecca L. Carl, MD: These treatments have a little bit of an adjustment. So usually people tell us that the first night of the first cast, or set of casts, babies are a little fussy. Sometimes babies get a little sensitive after they've had two or three casts, they get sensitive when we're stretching the foot. Often when we transition to the brace, babies are fussy for a couple of days, but they seem to adjust to the next stage of treatment pretty, pretty nicely. It's hard to gauge pain in a baby, a newborn especially, and there are certain things we look at, certainly things like crying and facial expression and how tense the baby seem. But generally with clubfoot, we don't think that babies experience a lot of pain with the treatment. And some babies will actually sleep through things like the casting and even the tenotomy procedure once they have had the local anesthetic. Families often ask me, well, is my child's first cast. Can I give them a dose of Tylenol, acetaminophen? And it's fine to try a dose of acetaminophen, but if they're fussy with the casting, it's usually just getting used to having a cast on their leg. We don't think that they really have a lot of pain. Often families will tell me my baby was no different. I always say about clubfoot treatment when people ask me is that it's not painful for patients, it's painful for parents. And I mean, psychologically painful because having a newborn is so stressful and parents have to adjust to one, having a newborn who's going to keep them awake and they'll worry about being responsible for a new human being, but also having to come in once a week and adjust to the new phase of casting the procedure, the braces. So children rarely remember anything about the club. foot treatment, but parents always remember those first few weeks when they had a newborn and they had to come to see us. 

[00:08:49] Romie Gibly, MD, PhD: Yeah, the skin under the cast can start to get a little sensitive after the first several casts. I akin it to if you wear your hair in a bow tie too tight, or you're wearing a hat for too long and your hair almost hurts, that sense of just that little bit of extra sensitivity. And so the babies tend to not, kind of respond, to that touch. But as soon as a new cast is on, they're comfortable and happy again. It's not painful. It's just sort of, a lot of physical contact. 

[00:09:12] Erin Spain, MS: I want to hear more about Lurie Children's approach when it comes to treating clubfoot. What makes this program special and why should parents consider Lurie children's if they find themselves in this situation? 

[00:09:23] Rebecca L. Carl, MD: Well, I think one thing that we have that's wonderful is we have a terrific multidisciplinary team and we work together. So in addition to me and Dr. Gibly, we have an athletic trainer who works with me, Adam, and Dr. Gibly has a physician assistant who works with him, Liz Galvin, and we have orthotists that we work with, and they're very used to fitting the braces for these patients. We have physical therapists who can work with these patients if they have any gross motor delays. So I think that is one real advantage is that we have people from every discipline who know a lot about clubfoot and are used to treating infants, young children, and even adolescents with a history of clubfoot. 

[00:09:59] Romie Gibly, MD, PhD: Yeah, I think, conceptually treating clubfoot is not extremely complicated, but it requires a certain volume of care for your provider to be comfortable with the casting, the potential complications, and how to deal with the complications when or if they do happen. And I think that's a big benefit to us at Lurie Children's. I think we are some of the highest volume casting here in the Chicago area. We have a fairly, united program here. If I'm out of town for a week or Dr. Carl is out of town for a week, we often exchange patients so that they can maintain a continuity of care and aren't left hanging. And if there's any sort of trouble, we have a very open line of communication. Patients move, things like that. And so, you're not stuck relying on just a single provider who may or may not have a lot of daily weekly experience with clubfoot. 

[00:10:44] Erin Spain, MS: There are also some instances that are more complex. How is Lurie Children's able to specifically help those patients who may have complicated medical histories or other issues going on with their clubfoot? 

[00:10:58] Romie Gibly, MD, PhD: Sure. Well, I think there are two sort of classic types of additional complexity. So one example would be like those children born with spina bifida or severe cerebral palsy. We have colleagues who specialize in those patients and their issues, Dr. Jill Larson and Dr. Vineeta Swaroop, who take excellent care. Those clubfeet are fairly unique. And, while the general principle of using the Ponseti Method is the same, the expected complications, duration of treatment, and long term surgical needs are very different. And so that, for example, is a team we have at Lurie that is very able to take care of that. Another example is a patient with something like that we call arthrogryposis is a joint contracture disease. And, some kids are involved in all or most of their joints. And some kids are really just involved in their feet and or hands, and those require, really a little more care with casting. It's the same Ponseti Method, but whereas a normal baby may take five or six casts to get a corrected foot position, a child with arthrogryposis might take a dozen or more. And the more casts you put on, the more opportunities there are for complications or inducing deformity or having other troubles. So again, finding a provider that has a high volume of care and can anticipate and prepare for those things is really important. I've certainly been on the receiving end of well-meaning orthopedists doing Ponseti casting who clearly don't have as much experience, and sometimes deformities can be induced into the feet during the casting process that have to be sort of unwound before you can start over and treat and it can lead to quite a long treatment path for those patients. 

[00:12:26] Erin Spain, MS: Talk to me about the conversations that you have with parents from initial diagnosis, through the end of the journey, how do you support them during what can be a really challenging time? 

[00:12:37] Romie Gibly, MD, PhD: During certainly prenatal visits, I spend a lot of time just getting parents reassured that it's going to be okay. That clubfoot is not a permanent disability type of diagnosis. It's something we can and do manage. And that idea of like, don't worry about that right now. We'll take care of it. You're going to have to see us a bit. At the end of the day, your child is going to run around and, play sports and go to school and drive you just as crazy as if they did not have clubfeet. And I think just trying to get them ahead of that thought process and realizing that they're going to have a child that is, for all intents and purposes, a normal child. We just have a little bit of work to do when they're young. 

[00:13:12] Rebecca L. Carl, MD: Most of the time clubfoot happens by itself. It's not part of a syndrome. So we call that idiopathic clubfoot, but sometimes clubfoot does happen with other associated medical issues. And, one thing that we talk about is just if other issues do come up, we really have, a very comprehensive treatment approach with lots of colleagues who can take care of every issue, and that we will make sure that they are seeing the people who can give their child the best outcome. Certainly I would underscore what Dr. Gibly said for idiopathic clubfoot. We expect that children will have active, healthy lives and not be limited by issues with their feet. 

[00:13:44] Erin Spain, MS: At what point does a baby have a last appointment with you and the program? And then do they come back at a certain age for follow ups?

[00:13:51] Romie Gibly, MD, PhD: So, I don't ever kick anyone out of the program per se, but the active casting achilles tenotomy, if they need it, period is generally about two to three months of the baby's life at a young age. They are then generally wearing some sort of nighttime brace. Our goal is up to about age four, if possible. Once they graduate from brace wear, they are usually seeing us much less frequently, maybe once every six months to a year or two as they age. Parents and families do tend to age out of our practice when they feel comfortable and their child is growing and they haven't had issues for years, but there's not necessarily a specific end date, in the sort of general treatment path. Obviously, children with more complicated clubfoot or clubfeet that have had recurrences may be seeing us more, but most, most all the work is done by the time they're four or five. 

[00:14:37] Erin Spain, MS: So, long-term outcomes are good. Is there any situation where somebody may come back as a teenager or an adult and need extra care after undergoing the Ponseti Method? 

[00:14:47] Romie Gibly, MD, PhD: Outcomes are, I would say, in fact, great for most idiopathic clubfeet. There is an issue where some clubfeet do have a tendency to recur. That's usually a, under age eight kind of problem where the foot starts to curve back and they may need some additional casting or potentially an additional surgical procedure. But, most of the referrals for clubfoot issues in teenagers or adults are patients that either were inadequately or incompletely treated initially or underwent major surgical correction as their first treatment, you know, not using the Ponseti Method and they can develop some significant arthritis and foot deformity issues that sometimes we have to take care of surgically. 

[00:15:24] Erin Spain, MS: Some parents may worry that if they do have a child with clubfeet, that other children in the future could also have this condition. Tell me about that. Is there a familial link here? 

[00:15:34] Rebecca L. Carl, MD: Well, there are some families where clubfoot runs strongly, but generally clubfoot does not run super strongly in families. For example, if you have identical twins and one of them has clubfoot, the chances of the other twin who has identical genetics having clubfoot is only about a third. That being said, sometimes we recognize that in a family, clubfoot is showing up every generation, and then when that occurs, our genetics team can help families look at if there's a genetic link. The genetics of clubfoot is not super well understood. There are people studying this, and there have been some candidate genes identified, but occasionally we have families where it seems to run really strongly, and they can meet with our geneticists to look into that a little bit more. 

[00:16:09] Erin Spain, MS: Dr Gibly, you are passionate about not only using your expertise here at Lurie Children's, but in other places around the world. Tell me about the work that you do in other countries with the Ponseti Method. 

[00:16:22] Romie Gibly, MD, PhD: Internationally, the world has done actually a pretty good job of distributing and disseminating the Ponseti Method. There are providers in most countries, and many children are able to get Ponseti style care. The bigger challenges are those complex clubfeet, the ones that require surgical intervention, the ones that require further work and aren't as straightforward. And those are more the types of children that we encounter. So I am part of a group that goes to Columbia twice a year. There are multiple surgeons around the country involved and I've just been going the last three years, but it was based originally here in Chicago. And, on that trip, while we do see some what we would consider regular or idiopathic clubfoot, primarily the kids that are ending up needing our help and expertise on those trips are the kids with arthrogryposis or spina bifida or cerebral palsy that need really advanced surgical clubfoot care and that can be a lot harder to come by in resource poor areas. 

[00:17:16] Erin Spain, MS: What advice would you give to parents who are just now starting this journey with their child? 

[00:17:21] Romie Gibly, MD, PhD: The advice I give is to, you know, if they're still pregnant with a diagnosis of clubfoot, I tell them to, you know, really just put it aside and not worry about it. There's nothing they need to do in preparation. There's no special equipment they need to buy. They can use regular baby carriers, regular car seats, cribs, sleep sacks, things like that. And really just say, you know, try to take your time to enjoy the pregnancy, get your head wrapped around a new child coming into your life. Have that child. Get home and then give us a call. You know, our goal is to start treatment at about two weeks of life, but it's really the same whether it's two, three, or four weeks. The couple of weeks here or there don't really change much except when the end date of treatment will be. And so get the child home, make sure they're gaining weight and we will start casting and really trying to help them understand that we are here to guide them through it. I think just reassuring them that us as a team are going to take care of them and help get their kid up and running and that they've got someone there to help take care of it for them. 

[00:18:13] Rebecca L. Carl, MD: It can seem daunting in the beginning, but after a few weeks, as we get into the casting, it will just be part of the new normal. And after a couple months, the bulk of treatment is completed and you can kind of resume life as normal, as normal as it can be with a one or a two or a three month old baby at home.

[00:18:29] Erin Spain, MS: Well, thank you so much, Dr. Romie Gibly and Dr. Rebecca Carl for coming on the show, sharing your expertise and all that you can offer families at Lurie Children's. Thank you so much for your time today. 

[00:18:40] Romie Gibly, MD, PhD: Thank you, Erin. 

[00:18:42] Rebecca L. Carl, MD: Thank you for having us. 

[00:18:43] Erin Spain, MS: For more information, including how to make a referral or an appointment, visit LurieChildrens.org.