The following is a conversation between Chesca Colloredo-Mansfeld, Executive Director and Co-founder of MiracleFeet, and Denver Frederick, Host of The Business of Giving on AM 970 The Answer WNYM in New York City.
Denver: There are disabilities that children are born with which are treated at birth in a fairly routine manner in the developed world, but in low-income nations, many of these disabilities are left untreated, with devastating consequences for both the individual and their family. Cleft palate would be one; another is clubfoot, which we’ll be talking about tonight, and we’ll do that with Chesca Colloredo-Mansfeld, the Executive Director and co-founder of MiracleFeet.
Good evening, Chesca, and welcome to The Business of Giving!
Chesca: Thank you so much, Denver.
Denver: Start by telling us: what is clubfoot and what causes it?
Chesca: Clubfoot is another congenital birth defect. It affects one in every 800 children born worldwide, so the incidence rate is actually the same here in the US or in Europe as it is in developing countries. The difference is that in developing countries, it is left untreated, while here in the US, it’s routinely treated at birth.
What clubfoot causes for the child is that if the feet are turned inwards and upwards, it can affect one or both feet. And if left without treatment, it makes it very difficult and painful to walk properly. As a result, kids in low-income countries, born with a condition, who can’t access treatment grow up unable to walk properly, which has incredible stigma associated with it in low-income countries. Often, these children are excluded from going to school, joining in with family life, village life, community life, and so their future tends to be a downward spiral in terms of opportunity to participate fully in life.
Denver: Chesca, what are some of the primary barriers to treatment?
Chesca: Two main barriers would be lack of understanding that this condition is treatable. So, a child born in a low-income country, the parents may have no idea that this is actually something that can be treated relatively easily and completely, and so they don’t seek access to treatment. That lack of knowledge extends into the healthcare system, where they may go to their local community health center or may ask the midwife, “What’s wrong with my child’s feet? They don’t look quite right.” Those people may not even know that it’s treatable, so they don’t get good advice about seeking treatment when the child is first born. So, that’s one barrier.
The second barrier is just a lack of understanding of how to treat clubfoot in low- and middle-income countries. In the US, the gold standard treatment is something called the Ponseti Method. It’s a non-surgical treatment. It has wonderful results when done correctly. But, unfortunately, there are not many health care providers in low-income countries that understand the method and have been trained properly in it, and have all of the equipment and the ability to routinely provide that treatment. So, it’s both the knowledge and the clinical capacity that are barriers initially.
And then there are things like distance from the clinic: A lot of people live a long way away; it’s hard for them to get there; you have to come back for multiple appointments. And so, for a family with both parents working, or with limited resources, that can also be a barrier.
So, we provide a really comprehensive program, but it’s really based on building local capacity…It’s all happening locally, which means that, hopefully, the solution is there for the long term, and it’s a more sustainable solution to a problem that, obviously, we can’t ever prevent children being born with clubfoot, but we can make sure they get treated.
Denver: Well, enter MiracleFeet. Tell us about your organization. And what was the inspiration for you to start it?
Chesca: I founded MiracleFeet with some other parents who had children born with clubfoot here in the US. Their children were lucky enough to be treated with the Ponseti Method. When they learned that children in low-income countries did not have access to treatment, they were horrified that something that seemed so simple to treat and had such extraordinary results was not available worldwide. So, together, we connected about nine years ago to found the organization.
My inspiration was that I’d been brought up in Africa, and I’d always wanted to do something to make life better for kids in low- and middle-income countries, having seen the difference in opportunity between what my life looked like, versus the people that we were living around. I happened to be at the University of Iowa where the doctor who developed this method, Dr. Ponseti, was based. And so, I learned about it, and that was kind of the initial inspiration.
We started the organization, as I said, nine years ago, and the way we work is to build up the capacity in countries that don’t have the ability to treat clubfoot. Now, they’re all low- and middle-income countries, but we work with the local doctors, the local physical therapists, the healthcare providers to give them the knowledge and expertise that they need to treat the problem in that country. We also work on raising awareness of clubfoot and making sure that people understand that it’s treatable; so we work on early referral and identification. We also work on following up with a family to make sure that they complete the treatment, so we don’t get a kid who only starts and then never finishes.
So, we provide a really comprehensive program, but it’s really based on building local capacity. So, we’re not putting a lot of American or European doctors on airplanes and flying them in to treat these kids. It’s all happening locally, which means that, hopefully, the solution is there for the long term, and it’s a much more sustainable solution to a problem that, obviously, we can’t ever prevent children being born with clubfoot, but we can make sure they get treated.
Denver: Well, those local solutions always work the best. Talk a little bit about the Ponseti Method. You’ve mentioned it once or twice, but tell us exactly how that works.
Chesca: It’s a non-surgical method that can be started as soon as the child is born. Ideally, the kids start treatment in the first few weeks or months of birth. The doctor will manipulate the tendons and ligaments in the foot gently – really doesn’t hurt the child – and then put a plaster of paris cast on. They leave the cast on for one week, and the feet have moved 10 to 15 degrees. They repeat that process normally about three to five times, so over the course of three- to five weeks, and then by the time they’ve done that, the feet are in a fully corrected position.
Now, at that point though, they do need to do one little surgical procedure. It’s an outpatient procedure done with local anesthesia, so very low-risk to the child. They release the Achilles tendon, which allows the foot to sit properly flat on the ground. At that point, the foot is fully corrected. The child can learn to crawl, can learn to walk, can go to school, can play sports, do everything that any able-bodied child would be able to do.
However, there’s one little catch, which is just like when you’ve had your teeth moved around for orthodontic treatment, you have to wear a retainer. Clubfoot is similar. And for the first five years, or while the child is under five years of age, the kids need to sleep in a brace at night and that just stops the feet from relapsing. There’s a tendency in some kids for their feet to push back in when they go through a major growth spurt, which happens a lot between zero and five. So, wearing that brace at night, which just positions the feet in a slightly outward-facing position, seems to prevent the relapse from happening.
That requires us to do follow-up for five years. So, they have to come in every few months, and the time period gets longer as they get older. Their feet grow, so they need a new brace, a new pair of shoes…there are a couple of reasons why we want to see them back in the clinic. That does mean there’s an added challenge in terms of follow-up with these kids. But the treatment itself is very effective, very simple; and because it’s non-surgical, it’s very inexpensive, which makes it appealing in terms of solving a problem.
Denver: What countries are you currently operating in?
Chesca: We support programs in 27 different countries around the world. They are where you would expect in terms of being in places where they’re a lower-income country, so in Central and South America, Africa, and Asia.
Denver: What role is technology playing in the work that you do in trying to scale the program up to other countries?
Chesca: Great question. Where we’re really leveraging technology is, I think many nonprofits working in the field of global health are doing. We developed our own brace. While that was not using technology, in terms of sort of computer or IT technology, we used design thinking to work with Stanford University to come up with a brace that we can produce for $20, which has all the functionality of the braces that are used in the US that cost $350 to $1,000. So that was one innovation, and we make sure that we can provide braces that are very high-quality and easy to use at a low cost, which we give away as part of our program to the families.
We’ve also used technology. We have a mobile phone-based app to collect the patient records. So, basically, a medical record where we’re able to collect the information about each child and make sure that our partners are delivering really high quality. So, we can track quality of treatment and outcomes for every child that we treat, but also obviously looking at that at a doctor level, a clinic level, a country level, so we know where to focus our resources, and we know where… which country might need help in a particular area.
So, if children happen to be dropping out during the bracing phase, we know that we need to invest more in parent education and follow-up during that latter part of the treatment. If the doctors are using more casts than we would expect, which we can see easily by looking at the medical record, then we know that we need to go back and do additional training in that particular clinic. So, we use technology extensively in terms of monitoring the quality of treatment as we scale, and then obviously using that to focus where we put our resources, both time and financial.
One last area where we’re using technology is that we are digitizing the training curriculum, which we hope will make it easier to train more doctors at lower cost, which will obviously help solve this overall problem of having lack of access to treatment globally.
This is a child, and by supporting MiracleFeet, you’re going to make sure that he or she has the chance to join in. I think we all can relate to that on an emotional level …that enabling a child to be able to run around, walk around, go collect water, play soccer, join in on playground games at school…it’s something that would warm everybody’s hearts.
Denver: Chesca, let me ask you a little bit about that philanthropic support and, particularly, how do you go about engaging people to support an organization and a cause that I would presume the majority have no direct relationship with?
Chesca: That’s very true. Most people who support MiracleFeet, and we’ve been very lucky to have a lot of both very generous donors– some of whom do have a connection to it, but as you say, most don’t. I think what really appeals to people about this issue is that it’s a very easily identifiable problem that can be easily fixed with a proven, but inexpensive intervention at birth. So, you can change the future trajectory of a child’s life very early on, before any damage happens, by making sure that they get access to this treatment.
If you’re able to fix this child’s feet, they’re going to be able to go to school. They’re going to be able to get a job, and they’re going to literally be able to stand on their own two feet for the rest of their life in terms of not being dependent on other people because they can’t walk properly, and because of the stigma associated with disability in many of these countries.
So, your return on investment, if you want to put it in those terms, is very high because the fully loaded cost is about $600. The actual cost in a country to treat one child is about $250. Whichever way you look at it, that person is going to produce on average a $120,000 of additional earnings over the course of his or her life, let alone the fact that they’re going to be able to join in, be literate, run around, participate fully, and reach their full potential… which would be very difficult, sadly, living with any kind of disability in many of these countries.
So, the return on investment is something that I think attracts people to this cause, and then the fact that it’s so tangible. This is a child, and by supporting MiracleFeet, you’re going to make sure that he or she has the chance to join in. I think we all can relate to that on an emotional level, that enabling a child to be able to run around, walk around, go collect water, play soccer, join in on playground games at school…it’s something that would warm everybody’s hearts.
Denver: Well, certainly, your work goes well beyond fixing feet; you’re really transforming these lives. Why don’t we close, Chesca, by having you share one of your favorite patient stories.
Chesca: Oh gosh, there are so many. One, I think, that is a tragic story, but it has a very happy ending, but it really speaks to why this issue matters, was a child that we were able to treat in Tanzania. The parents had the child born with clubfoot in a rural village. They went to find treatment in a couple of different locations, but unfortunately, the people that they sought treatment from didn’t know how to do it. So, after a very frustrating six months of somebody attempting to put casts on this child… who didn’t know what they were doing… there was no change in the child’s feet.
The father became so desperate because he knew that the future for this child was going to be really grim if he couldn’t walk properly, he actually tried to murder his own child twice. The mother was able to protect the child, and fortunately, sought refuge in a hospital. And it happened to be the hospital that we had our program in. And so, as soon as this kid was identified as having clubfoot, the local doctors there were able to treat the child. They kept the child safe in the hospital for a while, but eventually, the child and the mother were able to return to the village and return to the family.
While it’s a horrifying story. I think it really speaks to why this is such an important issue and why we can have such impact by changing awareness of it and making sure that there’s easy access to treatment wherever you might happen to be born.
Denver: Absolutely. Well, Chesca Colloredo-Mansfeld, the Executive Director and Co-founder of MiracleFeet, I want to thank you so much for being here this evening. For listeners who are interested in learning more about your work, or might be inclined to financially support it, tell us about your website and some of the information you have there.
Chesca: You can visit www.miraclefeet.org. A lot of information about the way we work, the countries that we work in, about the Ponseti Method, and of course, you can click on the donate button if you would like to support our work at any level. Every dollar helps, and every gift is greatly appreciated by us and the families whose lives we are able to change.
Denver: Well, you’re doing some incredible work. Thanks, Chesca. It was a real pleasure to have you on the show.
Chesca: Thank you so much, Denver.
Denver: I’ll be back with more The Business of Giving right after this.
The Business of Giving can be heard every Sunday evening between 6:00 p.m. and 7:00 p.m. Eastern on AM 970 The Answer in New York and on iHeartRadio. You can follow us @bizofgive on Twitter, @bizofgive on Instagram and at www.facebook.com/businessofgiving.