I offer the following insight into choosing the RIGHT DOCTOR for clubfoot treatment. This is CRUCIAL. I had no idea how important this seemingly simple decision would be much like other parents out there. Please research and do your homework, take my advice below to make the right decision for your little one!
After the initial shock of the clubfoot diagnosis subsided and once we got the amnio and microarray testing back confirming that our baby was perfectly fine with just a special foot we moved to the next phase, choosing a doctor for her treatment after birth.
My perinatologist recommended an orthopedic surgeon and gave us her contact information. He told us that we should set up a meeting where we could get more information on the treatment process and then once she was born we would have an appointment with the ortho team to start the correction. I thought nothing of this, took the contact info and set up an appointment.
At this point I started doing what I do best, researching and beating a dead horse to death. I spent every waking moment researching clubfoot. I wanted to be fully prepared for what to expect. Among my research I stumbled onto the Clubfoot Facebook Page and soaked up everything I could find about what real moms and families experiences were and attempted to gain some insight into the Clubbie World which I was still very anxious about.
Following the daily posts on this page was INVALUABLE to me and to our decisions for treatment. While clubfoot is actually a fairly common birth defect it’s not likely that you know anyone who has gone through this journey, or recently at that. The clubfoot page, at last count, had around 6700 members. There is nowhere else that you will find this amount of common ground and insight. Anyone out there that is just finding out about their baby’s diagnosis GO TO THIS PAGE and lurk around for a while. You will start to notice common themes, just as I did.
The Main Thing I Learned
Not all doctors are created equally!
I cannot stress this point enough. I am SO glad that I did the homework to figure this out AHEAD of time rather than finding out after our daughter had received improper treatment.
In order for kids with clubfoot to achieve and maintain correction they must be treated with specific protocols and expertise during casting and bracing. These protocols have been established for a very long time and have proven successful and require a high level of expertise. The current gold standard of treatment is the Ponseti Method. However, despite the fact that most all orthopedic surgeons and physicians out there use the Ponseti Method they do NOT all do it the same. What??! That’s exactly what I thought. It is true, while doctors can be listed as “Ponseti Certified” this is no guarantee to their actual expertise in performing the casting to correct clubfoot. As such, MANY MANY kiddos receive improper casting and treatment which further complicates the foot leading the foot to become what is called “complex”.
I saw post after post every single day from parents who had kiddos with major issues from improper treatment. It made NO sense to me at first, how could these kids be getting their feet messed up by a doctor who is trained in fixing this very issue? The only answer I have for this today is that there is no mandatory requirement, test, licensure, etc to guarantee that these doctors have the proper skill, technique, and expertise to be treating clubfoot. I have even seen many that are said to have trained with Ponseti himself that have created complex feet in several little ones. Clearly there needs to be a standard of qualification and performance when it comes to treating clubfoot, but to date that does not exist, so you are left to decipher your doctor’s qualifications yourself.
So How Do You Choose A Doctor?
- Clubfoot Groups & State Pages
Thankfully there are many moms from around the country that you can interact with, you can learn from their trial and errors. There are also some state clubfoot groups where you can ask other moms in your state for their recommendations.Red Light Green Light List
- Next, there is a document available on the Clubfoot page that lists doctors as red light, yellow light, and green light. This has been compiled by personal stories from clubbie families and the treatment they’ve received from these doctors. The green lights are obviously successful treatment stories whereas the yellow and red are not. Definitely check out this list in relation to the doctor you are considering. If they aren’t listed post a question and see if anyone has experience with them.
- Consultation Questions
There are also plenty of things that you can ask these doctors in consultations ahead of time prior to doing your treatment. We met and talked with a few orthos locally to get an impression of their qualifications and it is amazing what you can infer from these meetings ahead of time. The result of our meetings left me with the confidence in the decision to travel for our daughters care. See below my list of questions to vet any prospective physician for your clubfoot treatment.
- Red Flags
After you have done your homework you’ll start to notice RED FLAGS in treatment, watching others post their tribulations offers valuable insight. Make sure these red flags are not a part of your prospective doctors repertoire. See below my list of red flags.
Qualifying Questions for Potential Doctors
- Do you use plaster or fiberglass casting?
- How many casts do you typically utilize for correction?
- Who applies the casts?
- How often are the casts changed?
- What are the odds that my child may need surgery?
- How often do you perform surgery on clubfoot children?
- Do you perform a tenotomy?
- Is the tenotomy done under general anesthesia or with local numbing cream?
- What is your bracing schedule?
- Are you open to alternative bracing methods or do you have experience with any?
- What solutions do you have for children who don’t tolerate boots n bars?
- What type of boot and bar do you utilize after casting and why?
- How many clubfoot children have you treated?
- How many of these children needed surgery?
- When do you start casting? What age?
These questions will give you a very good indication of the perspective of your potential doctor. They should have no problem telling you how many patients (approximately) they’ve treated with clubfoot and how many of those required surgery later on. Ideally they have treated hundreds or thousands of kids with clubfeet.
Their response to the questions about surgery are very important, surgery is a LAST RESORT. ALWAYS. If your doctor seems to talk about surgery like it’s no big deal, run. The first ortho we met with did this “Oh some feet are just wicked little feet and they need a surgery or two and they’re fine”, my jaw hit the floor, not only was she talking about it like it was nothing but she mentioned MULTIPLE surgeries. Not good.
Second most important question is the number of casts. It should only take 5 casts to correct the foot. Every once and a while you may see up to 8, if they mention ANYTHING beyond 5-8 casts, run. This is absolutely not normal and a major red flag.
See who actually applies the casts, many doctors have their casting techs apply them. This is not a good thing. The actual doctor should be applying them EVERY time. They are the ones trained to do so, not the techs even if the techs seem great.
Tenotomies are another gauge of their experience, MOST kids should have a tenotomy performed, it is rare not to do the tenotomy. If your doctor is wishy-washy about the kids who get it versus those who don’t really need one you should consider that a potential red flag.
Find out what their bracing schedule is and why, there are many variations of this and some that make more sense than others. Asking about alternative bracing options was a big deal for us since we intended to use something other than the boots and bars. All of the doctors we spoke with were adamantly against this but some seemed more willing than others to accept the choice we made for our child.
Outside of the training and ability they may or may not possess you should also be able to gauge their tone and ego which I find highly important. Doctors that are very set in their ways may not be so open to your questions or concerns along the road, they may be unwilling to offer alternative solutions, etc. This is a great indication of how cooperative they may be with you as a parent for this LONG journey ahead. It’s important to pick one that you trust and can see yourself working with for the next several years.
RED FLAGS IN TREATMENT
Half leg casts versus full leg
A proper Ponseti cast is applied to the entire leg from the toes to the groin with the knee bent at roughly 90 degrees.
Non Visible Toes
Toes should always be visible on the casts so you can check for circulation quality. Disappearing toes indicate a slipping cast which should be removed immediately.
There is no reason a cast should slip if it were applied properly. This is a clear indication of improper treatment.
While this one is subjective and based on each child and their respective flexibility it is RARE to NOT need a tenotomy. If your doc is not recommending a tenotomy I’d be asking a lot more questions.
More than 5 casts
Proper casting and correction is achieved with 5 casts (there may be slight differences for kids getting new treatment from prior improper care) if your doc mentions more than 5 something is NOT right.
Creases on the foot
Developing or worsening creases on the mid foot or the back of the heel are an indication of complex foot developing which is caused by improper treatment and casting. If this appears to be happening you should seek a second opinion immediately before any further casting is applied.
It is normal for kiddos to have an unfavorable reaction to casting, it’s not a pleasant thing and they will likely be fussy here and there throughout the process especially when new casts are applied. However, if they are a complete disaster crying non stop at any point during treatment you should ask your doctor. I’ve seen this be a major problem for parents whose doctors applied casts incorrectly or whose casts had overcorrected the foot.
Should I Travel For Care? Is It Worth It?
After researching how much is involved with choosing the right doctor it’s no surprise that it’s hard to find a true expert out there! Another thing you will notice following the clubbie pages is that there are a lot of parents who travel large distances to see doctors for care. This is for good reason. As said, the MAJORITY (and I’m calling it the majority) of orthopedic doctors are NOT skilled nor qualified to be treating clubfoot and routinely perform improper treatment. This leads to further complications for these kids, further casting (if possible), surgeries, etc. For the parents of these kiddos ANY amount of travel is worth it if it finally fixes their kids foot/feet correctly.
While I was seeing these horror stories posted daily I also saw lots of recommendations for specific doctors that were represented as true experts or what I call Clubfoot Royalty. These doctors were the tried and true, the creme de la creme, the ones that people from all over the world came to see, the ones that people finally sought out after months or years of improper treatment and finally saw resolve. I will provide the contact info of these doctors below.
In the end it’s a very tough choice? Do you travel to see the best or do you chance it? The pros and cons of each are different for every family. Perhaps meeting with your local doctor and asking the qualifying questions will provide peace of mind, perhaps talking with local families who have success/horror stories will give you the answer you need. All I can emphasize again is that they’re not all created equally. I try to think of it this way, if a professional athlete needed ACL surgery from an injury do you think they’re going to go with the most convenient option or are they going to travel to whoever is the best in the country for surgery? While the answer may seem obvious, it may not be feasible for many. I will talk about feasibility options below because there are a lot more resources available to travel for care than most would know!
Our Decision To Travel
You can call me biased, whatever, the results speak for themselves. There was a reason parents traveled to specific doctors. I don’t have to be a statistician to see the fact that these doctors clearly knew what they were doing, just the sheer number of patients that they saw on a daily basis gave them a major hands up on other doctors around the country.
The problem- seeking their expertise meant traveling for our baby’s care. All I could see were dollar signs and a disaster of logistics with 3 other kids at home to take care of. I put the whole idea on the back burner because of these factors and didn’t revisit it until much later.
When our daughter was born I sent photos of her foot to Dr. Dobbs while we were still in the hospital asking his opinion on whether they appeared to be a tough case. His response was that her foot was not atypical nor rare but did appear quite rigid and would require expert casting. I knew in that moment with 100% certainty that we needed to travel to him for treatment. All of the qualifiers that I had put in place prior to her arrival immediately synced in my brain to tell me loud and clear that we needed to travel. So we did.
It was the most incredible experience on so many levels. I will devote an entire post to our journey. In the end, her foot was corrected expertly and I have zero concerns regarding her treatment.
CLUBFOOT ROYALTY- THE BEST DOCS
My personal opinion is that there are 2 doctors in the country that I would trust with complete confidence to treat my child. Now this isn’t saying that there aren’t more, I’m sure there are more doctors out there that have done a great job with their clubfoot patients but if I’m giving an opinion on the best of the best, there are only 2.
Dr. Matthew Dobbs
A successor of Ponseti, he trained at the University of Iowa and is world renown for his expertise in treating clubfoot. He is routinely recognized as one of the Best Doctors In America. He is also pioneering a lot of genetic research into the causes of clubfoot, has developed a dynamic brace for use in clubfoot patients, and mentors up and coming orthopedic surgeons. He treats thousands of clubfoot cases a year and in our discussions said that about 80% of his patients have come to him after improper treatment by another doctor. He has a massive following of adoring patients and families for good reason. The man is a true professional, class act, and a master of his work. Watching him treat our little one was like watching Van Gogh paint. Words can’t express how thankful we are for his care, concern, and expertise. His team is second to none and made our journey so much easier. I cannot advocate for him enough and I’ve yet to hear of a single poor experience or outcome from his hands.
St. Louis Children’s Hospital
4S60, Suite 1B
One Children’s Place
St Louis, MO 63110
You can contact his nurse Kelly for more information if interested
Dr. Jose Morcuende
Dr. Morcuende took over when Ponseti passed away. He practices at the University of Iowa and spent many years of fellowship learning from Ponseti himself. He is the President of Ponseti International Association and has been recognized many times as one of America’s Top Doctors. He also has a large following of families rightfully so.
University of Iowa Hospitals and Clinics
200 Hawkins Drive
Iowa City, IA 52242