This blog post is adapted from a post on Austin Shaw’s blog who is currently in Ecuador as a summer intern for miraclefeet. Picture below is of the Otavalo Market in Ecuador.
This week I was assigned the task of analyzing club foot in the area of Otavalo, most famous for its all-day, everyday market. Our goal here is to get an understanding of clubfoot in more rural areas, since we are planning to partner with doctors in the major cities of Quito and Guayaquil.
First on the list of clinics and hospitals was “Hambi Wuasi.” Because the clinic wasn’t busy, I met immediately with the director. There are certain days when my Spanish is rudely incoherent, and lucky me, I chose my first day of real interviews! Nevertheless, I discovered some very interesting information:
According to the director, the clinic hasn’t seen any clubfoot patients since his tenure began.
If there were a club foot patient, he/she would be sent to El Hospital San Luis.
The clinic doesn’t have the ability to treat clubfoot; it’s focus is primary care and not much else. If someone has a significant problem, he/she will go to San Luis.
The clinic is partially free. The Ministry of Health provides some funding. A consultation is $5. Any medicine is also $5.
The director explained that his clinic offers modern and traditional medicine (Otavalo is a very traditional town where many Quichua people reside).
The director had never heard of the Ponseti Method.
Getting a meeting with the director of San Luis hospital was more difficult. Her secretary required that I write a letter in Spanish explaining the need for a meeting, who I am, and available times. While you may wince at my speech, you would literally cry at my writing (a bit of a stretch; my writing isn’t half bad, although I resort to the present tense mostly). After about 30 minutes, I was told that the director is ready for me. The director was very busy, but I managed to find out:
There aren’t many people with foot problems at San Luis.
It’s a basic hospital with internal medicine, etc.; but no orthopedic ward.
If there are any surgeries, they are basic and on bones.
Every service is free here, thanks to the Ministry of Health.
If a clubfoot patient came to the hospital, he/she would be referred to Baca Ortiz.
I found it troubling that the Hambi Wuasi director said he would refer clubfoot patients to San Luis, while the San Luis director said she would refer them to Baca Ortiz Hospital (the large publich children’s hospital in Quito). This means someone with clubfoot in Otavalo will be shuffled around from one hospital to the next, finally ending up in Baca Ortiz. Ideally, parents will take their child with clubfoot to the nearest clinic to get treatment.
The Ponseti Method is fairly simple when the right tools are available. Because clubfoot treatment in Otavalo is essentially nonexistent, the parent must take his/her month(s)-old child to Quito, a 2.5 hour bus ride. There, the parent and child must take a metro, bus, or expensive taxi to Baca Ortiz, which is a good distance from the bus station. Upon reaching Baca Ortiz, the parent and child must wait in an endless line for potentially hours. They will probably have to spend the night in Quito with either family or at a pricey hotel near the hospital in order to make it back the next day to stand in line again.
This summer miraclefeet is getting a concrete understanding of clubfoot across Ecuador. Ideally, the clubfoot patients in rural areas would receive some help in getting access to treatment. This could be through mobile care or partnerships with other international health organizations that might know of people with clubfoot.
miraclefeet in Brazil: Our work with baby Vinisius
Vinisius is a 15 month old boy who was born with bilateral clubfeet. He is currently a patient at Hospital da Baleia in Belo Horizonte, Brazil. Hospital da Baleia was not the first place he received treatment. Previously, Vinisus was treated using a method other than Ponseti. After a year with no success, the other clinic referred him to Hospital da Baleia, where we met him with his mother and sister.
Vinisius is now on his third cast in the Ponseti Method and is doing well. When Vinisus’s mother first brought him to Hospital da Baleia, she was apprehensive, since they had had little success at the other clinic. Now the whole family has seen his progress, and is getting ready to buy Vinisus’s first brace.
In Belo Horizonte, the braces cost upwards of $170. Vinisus’s family started saving for his braces well in advance since the doctors at Hospital da Baleia advised them when he first started treatment of the high cost. Hospital da Baleia plans to use miraclefeet funding to buy braces for patients that cannot afford them and create a “brace bank,” where braces that children have outgrown can be given to others!
Soon Vinisius will be in his first brace – thanks to the doctors at Hospital da Baleia and his devoted mother who brings him to every appointment!
In the short amount of time I’ve been with miraclefeet, I’ve met so many great doctors with a passion for helping children with clubfoot, many of whom you’ve probably read about on this blog! I’ve also had the opportunity to meet the professionals that support them, such as physical therapists, nurses, and casting technicians. There is a lot of work to be done in a clubfoot clinic and it’s difficult for just one (or even two!) doctors to do so these additional professionals play a vital role.
We visited Hospital da Baleia in Belo Horizonte, Brazil, where we met Nadia, a casting technician, who’s been with the hospital for more than 40 years! For the last 20 years, she’s been working with Dr. Gilberto during the clubfoot clinics. She was like a bumble bee, zipping around the clinic as she interacted with the families, bustled back and forth between doctos, and gave tips on casting to the residents.
Some clubfoot clinics rely solely on the orthopedic surgeon to do everything. Nadia was a great example for how a great team contributes to a great clinic, such as the one at Hospital da Baleia.
-Lauren Wall, Program Manager, miraclefeet
Dr. Gilberto and Nadia work side by side casting a young patient.
Today was a very interesting miraclefeet day full of the ups and downs that represent some of the challenges of working on clubfoot in Brazil. The day began with the startling news that the largest children’s hospital and treatment center for clubfoot in the state of Bahia – Hospital Martagão Gesteira – was closing, but we later found out this was untrue. We received good news that the two largest charitable hospitals in the area have an interest in working with us on new programs.
These programs are led by Dr. Tierno and two of his former residents who he trained in the Ponseti Method – Dr. Milena Cruz and Dr. Antonio Gonçalves. We will support Dr. Tierno and Dr. Milena Cruz’s work at the Hospital Martagão Gesteira, but have to cope with the fact that the other doctors at the hospital continue to do surgery on clubfoot children. A child that arrives on a day when Dr. Cruz or Dr. Gonçalves are not working will have the wrong treatment. This is a terrible thought, but is the reality we have to chip away at here in Brazil.
Dr. Tierno has presented his results, trained and begged his colleagues to stop doing surgery, but the financial incentives and a love of “big surgery for big surgeons” is too much for this group of older, established doctors. We are confident this will change with time as evidenced by the next generation of doctors, like Dr. Cruz and Dr. Gonçalves, who practice Ponseti with great conviction and confidence. We return to the hospital today to iron out details of a formal arrangement.
Additionally, Dr. Gonçalves is the only pediatric orthopedic surgeon at Irma Dulce Hospital, and thus, all children seen here receive the Ponseti Method. He has not done surgery on a child for four years, but is challenged by an administration that does not see the need to provide a space in the children’s wing for a clubfoot clinic. The clubfoot cases are mixed up with general orthopedics creating a difficult environment to educate parents. Dr. Gonçalves’ director does not have a good appreciation of the Ponseti Method, so miraclefeet will work with him to provide free braces and an offer to provide funding to renovate a small room for a dedicated clubfoot clinic.
Sometimes it is hard to give money away even when the needs are clear and the doctors who will be the main implementers are interested in working with us. This program will take time, but I feel confident that we will land it – and get one step closer to providing better access to treatment for the 250 new cases and backlog of approximately 1,200-2,000 children living with neglected or relapsed clubfoot in the state of Bahia.
Continued from our visit on Monday to HU-USP in Brazil, Dr. Ferriera wants to work on reducing the time it takes for children born with clubfoot to get referred to her clinic. It is currently a multi-step, bureaucratic process. We had hoped to meet with the director of the hospital to get her support and input around this initiative, but she was called away at the last minute for Ministry of Health meetings. We hope to catch her on Friday when we are back in Sao Paulo.
To that end, miraclefeet's program in Sao Paulo is small, but a great model for how to implement an effective clinic. We talked about the need to identify and support additional clinics in the four other regions of the city since Dr. Ferreira’s clinic can really only serve the western part of Sao Paulo. She suggested contacting Dr. Alejandro Lorenco. A quick phone call found him to be enthusiastic and interested in meeting with us on Friday when we are back in the city. Events like this show the value of local partnerships and in basing our program around committed local champions who can help us navigate the best path to long term sustainability.
Dr. Laura Ferreira, her casting technician, Malia, and a student nurse, putting the third cast on a six week old baby.
Post by Chesca Colloredo – Managing Director, miraclefeet
Lauren (our new program manager…more on that later) and I arrived in Sao Paulo on Monday morning and headed straight to Hospital Universidade (HU-USP) to visit Dr. Laura Ferreira’s miraclefeet-supported clubfoot clinic and see children undergoing treatment. Two-year-old, Eric, ran up and down the corridor with normal toddler energy and it was hard to believe he once suffered from clubfoot. Seven-week-old, Victor, was having the last set of his casts applied before his tenotomy next week. These two examples illustrate how treatment can be fast and easy when started at an early age.
Dr. Laura’s program has a very strong team in place thanks to extra personnel provided by hospital administration who continue to be impressed by miraclefeet’s support and interest in her clubfoot clinic. She has nurses who soak the babies’ casts off just before she sees them to minimize any chance of relapse and to ensure the process is gentle and comfortable. Her casting technician, Malia, and a nurse trainee help her with casting, which maximizes her time. She also has two physical therapists who work with the children at the bracing phase to check the feet for signs of relapse, to fit the braces and to enter patient information. To round out her team, she has a social worker who explains the treatment process and educates parents, as well as placing phone calls to nearby maternity hospitals to explain that free treatment for clubfoot is available at HU-USP. This is definitely a model for success and one we will work to achieve in other hospitals.
In the course of our conversations, Dr. Ferreira explained that the miraclefeet patient database has helped allow the team to work seamlessly since all members of the team can access patient records as needed without chasing down paper files. Laura said they do not keep any paper records for the clubfoot children thanks to our system. She had a few ideas for tweaks to the system that we will incorporate into our current redesign to make the system even easier to use.
We had the wonderful opportunity to meet with Dr. Pirani and Dr. Norgrove, who are among those doing the most to address clubfoot in developing countries. In addition, miraclefeet’s Medical Advisory Board - Dr. Morcuende, Dr. Hyman, Dr. Spiegel and Dr. Lehman - were at the conference as well.
Much of the discussion focused on how to best help earthquake ravaged Haiti as several doctors are involved in helping rebuild orthopedic capabilities there. However, the issues raised were pertinent to our work in developing countries and included structuring projects to ensure that the solutions are sustainable and long-term.
We also had great conversations about the best way to provide low cost, but functional braces, as well as the treatment of older children with neglected clubfoot.
miraclefeet Managing Director, Chesca Colloredo, will travel to Montreal tomorrow for the Pediatric Orthopaedic Society of North America's annual meeting. She will be joined by several of the doctors who sit on the miraclefeet board of directors as she networks with medical professionals involved with clubfoot in developing countries. This trip to Montreal is an opportunity to update the doctors on what miraclefeet has accomplished in countries like Brazil and India, while also allowing Chesca to meet new medical advisory board members and develop new ways to collaborate on other initiatives. Stay tuned for more information.
Visit the miraclefeet website for more information and learn how you can become involved with treating clubfoot one step at a time.
On miraclefeet’s recent trip to Mumbai, India we had the opportunity to work alongside CURE in providing a Ponseti Method training course to orthopedic surgeons and medical residents. Ninety-five medical professionals attended the one day training course where they casted at least one foot model and in most cases an actual child with clubfoot. There were six stations with 15 participants and one trainer who ensured that active participation by everyone took place. There was also a live demonstration of a percutaneous tenotomy via webcam, which further helped attendees learn about clubfoot and treatment procedures using the Ponseti Method.
All participants underwent a pre-training test and post-training self-assessment and 60 of the 95 medical professionals returned evaluation forms. Here are some great statistics from survey respondents who attended this VERY important training session in Mumbai:
63% were residents in training while 37% were orthopedic surgeons
98% said they had heard of the Ponseti Method to treat clubfoot
95% said they use the Ponseti Method to treat clubfoot in their practice
90% agreed the training gave a clear understanding of the Ponseti Method
85% said they had adequate time to practice foot manipulation and casting
96% said they feel confident to apply a Ponseti cast after the training
Pictured above: Dr. Mathew Varghese, Head of Orthopedics, St. Stephen’s Hospital, Delhi, demonstrates the correct Ponseti Method casting technique to attending doctors and residents
Dr. Laura Ferreira heads up the clubfoot clinic in São Paulo and was our very first partnership formed in Brazil back in October 2010. The new director of the hospital where Dr. Ferreira is very excited about the progress she and her team are making with treatments using the Ponseti Method.
In fact, the hospital intends to present treatment results to the Secretary of Health for São Paulo in order to raise awareness of this congenital birth defect. This will also help ensure that babies born with the condition in the Central-West part of São Paulo get referred to the clinic for treatment.
Dr. Ferreira’s clinic is now a model on how to treat clubfoot correctly and has set a goal of enabling more clinics to emulate its success. Here’s an excerpt from Dr. Ferreira’s email to us after her meeting with her the director of the hospital:
“Today we had the meeting with our new hospital director…and it was very productive. She understands the importance of early treatment and is pleased our hospital now serves as a model on how to treat clubfoot correctly.”
Last week in India was filled with extraordinary extremes. We started at Lady Hardinge Hospital in Delhi, where Cure Clubfoot Worldwide (CCW), has created what they believe to be the biggest clubfoot clinic in the world with more than 700 children enrolled since its inception two years ago. All counselors were there when we arrived, getting ready to receive the 50 patients they expected that day. The hospital recently added a second clubfoot day due to numbers, and had seen more than 75 children the day before.
From there we went to the ultra-modern Delhi airport and were immediately transported into a world of air conditioning and global brands. The contrast serves to illustrate the extremely different worlds that exist within India; a country of rapid economic growth and opportunity, yet home to 49% of the world’s malnourished children (according to an article published in the Times of India three days ago).
Upon landing in Mumbai, we went straight to one of the five hospitals that will house miraclefeet/CCW clubfoot clinics. Passing decrepit apartment blocks and large areas of slum housing, and with people, rickshaws and wooden carts competing for space on the crowded streets, it was immediately clear that this vast city teems with humanity and poverty.
The All India Institute of Physical Medicine and Rehabilitation treats complex orthopedic cases from many states and is one of two public hospitals in Mumbai that has been using the Ponseti Method for several years. Despite this, it was probably the most run down hospital we have visited so far in India. A number of successfully treated children had been lined up for us to inspect as part of our official visit, but there were also signs that others have not been so lucky, ending up with early surgeries or relapses.
The hospital is clearly a great candidate for outside support. Many of the necessary building blocks are in place, including a supportive Director and a number of trained Ponseti doctors. However, some simple changes in process, plus the addition of counselors, will allow the doctors and residents to improve their outcomes, follow up and tracking capacity dramatically. Over time, this hospital will be able to make an even bigger dent in the problem of untreated clubfoot in India’s biggest city.
Maharashtra State (population 100M), with Mumbai as its capital, is estimated to have 1,500 new cases of clubfoot each year and approximately 10,000 neglected cases (aged 10 and under). There is a lot of work to be done to alleviate the misery of untreated clubfoot here, but the Delhi clinics that we visited give us confidence that it will be possible.
As part of a visit to kick off the Ponseti training for these clinics, Bridget Ryan Berman, co-founder and board member of miraclefeet and Chesca Colloredo-Mansfeld, managing Director of miraclefeet, spent the first day of their week-long India trip in Delhi visiting two clubfoot clinics established approximately two to three years ago.
By working with government hospitals, Dr. Santhosh George, Cure Clubfoot Worldwide’s regional manager for Asia, has created a sustainable model for clubfoot treatment in five Indian states. The government-funded hospitals provide doctors and basic casting and tenotomy supplies, while CCW provides training, braces and counselors.
It was clear in our visits today that the counselors are a critical role in ensuring success. The counselors check in with each patient, gently but firmly educating them on the Ponseti Method and reinforcing the importance of wearing the brace once casting is completed.
The counselors are very focused on the mothers. In the first clinic, a new mother arrived with a month-old baby, accompanied by the child’s grandmother. The women were illiterate and the counselor spent at least 30 minutes with them before being satisfied that the pair understood the treatment process and the importance of coming to the clinic each week.
miraclefeet just received the signed final partnership agreement from Hospital da Baleia in Brazil, which now brings our total number of clinics in Brazil to two. Hospital da Baleia is a charitable hospital that assists underserved populations in Belo Horizonte – the largest city in the state of Minas Gerias.
This clinic is now the largest clubfoot clinic in Brazil with four Ponseti doctors on staff who can treat more than 100 children each year. We will provide further training, braces and funding to this clinic to increase capacity and outreach with the ultimate goal of treating an additional 50 to 100 children each year.
We will update you more as information becomes available, but we’re so excited with these new developments!
On our recent trip to Nicaragua, we ran into some doctors at the same clinic on a medical mission with Cooperación Ortopédica Americano Nicargüense (COAN), a nonprofit group based out of….wait for it…Raleigh, NC! As you know, this is literally right down the road from miraclefeet headquarters in Chapel Hill. COAN works to optimize the healthcare and well-being of people in Nicaragua, so we were very excited to share how miraclefeet is treating clubfoot.
After talking with Dr. Greg Schmale and Dr. Emily Squyer from the University of Washington, as well as Dr. Ed Campion from UNC-Chapel Hill, they observed us testing the miraclefeet brace and were quite interested. They also confirmed that the doctors we were working with in Nicaragua were excellent and that the hospital desperately needs help.
This chance meeting gave us an audience with a group of doctors already doing work in Nicaragua and who offered to help test the miraclefeet brace with the time comes. The potential for more miraclefeet exposure and clubfoot treatment using the Ponseti Method are huge especially since these doctors are orthopedic surgeons and are very plugged into this particular network. Exciting times indeed!
9-year-old in Nicaragua highlights need for clubfoot education
Our last patient on this trip to Nicaragua was a nine-year-old boy, accompanied by his father, who traveled three hours by horse and two hours by bus to reach the clinic. He limped into the office with severe clubfoot on one foot and had NEVER received any kind of treatment in his life.
After examination, Dr. Mario Sequeira explained to both the boy and his father that he would take care of making the foot work properly, but it was the father’s duty to bring the boy to the clinic once a week for the next five to eight weeks. Clearly, this raised a lot of questions with the father like: How will my son ride a horse with a cast on up to his thigh? How will he manage at school?
These tough questions were addressed, but illustrate how crucial it is that we educate the medical establishment and parents in developing countries on clubfoot and The Ponseti Method. In reality, this boy should’ve arrived at the clinic when he was nine days old rather than nine years old. Nonetheless, we’re confident that he will be walking and running normally in no time!
We just received a great report from our Sao Paulo program that I thought would be of interest.
Dr. Ferreira, our partner in Sao Paulo, saw 17 clubfoot patients in her clubfoot clinic in the first 18 weeks of operation. This is about three times the volume she had expec ted. Of these, six have successfully completed the casting and tenotomy phase of treatment and are now in braces. The others are still in casts but responding well. Dr. Ferreira reports that simply by putting a spotlight on her clinic and work, miraclefeet has raised the profile of clubfoot within the hospital bringing resources, high level administrative support and confidence to her team. As Dr. Ferreira noted in a recent email, “There is much more we can do”. miraclefeet has increased the size of the grant to cover 50 children in the next year given the higher than expected demand and the increased support Dr. Ferreira is receiving from her hospital.
Changing a life can begin in just a few minutes. It does not require surgery or a fancy medical device. Nor does it imply physical pain or changing the status quo entirely. It is something quite simple, in fact, and something miraclefeet is excited to initiate here in Brazil. Changing a life can mean having access to a good quality brace. It can mean receiving one’s first Ponseti cast. In can mean being able to afford a bus ticket to the nearest Ponseti orthopedic clinic. miraclefeet began its efforts to make these simple, yet incredible changes to lives, beginning with the partnership with Dr. Laura Ferreira at HU-USP in Sao Paulo.
miraclefeet signed our first Hospital Partner Agreement with Dr. Laura at HU-USP on September 15, 2010. I recently visited Dr. Laura’s Monday afternoon clubfoot clinic. With this agreement, Dr. Laura will focus on buying braces for her patients, many of who cannot complete treatment as a result of poor quality braces. In addition, the miraclefeet support has given Dr. Laura an extra boost to her standing within the hospital, which will, over time, enable her to increase administrative support for the Ponseti Method at HU-USP.
During my visit, I observed Dr. Laura’s advantages in terms of her capacity to expand the Ponseti Method at HU-USP. For example, Dr. Laura already has an incredible team to help her with her efforts: her dedicated casting technician, set of nurses, and committed physical therapists to help her as well. Dr. Laura has a professional aura around her work with the Ponseti Method – she is fully committed to the Ponseti Method both as a medical innovation and the only way to change the lives of her clubfoot patients. Her smile immediately comforts mothers; her words capture their attention.
Despite these aspects of Dr. Laura’s clinic that make it conducive for the Ponseti Method, she faces many barriers to her work. For example, on the afternoon I visited, a number of mothers had removed their children’s cast days before making a trip to the clinic, not following Dr. Laura’s advice from the previous visit. The mothers did not take the initiative to go to the clinic immediately after the cast removal, but instead waited until the following week. One mother of a child who recently had a tenotomy removed her child’s cast 2 days later, but waited 4 days to come back into the clinic.
These barriers to treatment affect Dr. Laura’s capacity to treat, compounded by the lack of access to good quality braces. One child’s feet kept relapsing, for example. “It is the brace,” Dr. Laura told his mother. With the miraclefeet funding, Dr. Laura has begun supplying her patients with better braces. Even though the braces will not fix everything, they will lessen some of the constraints to treatment. The braces will help Dr. Laura expand treatment capacity in the hospital. They will improve the quality of care her patients receive. They will reduce the treatment period, which will allow Dr. Laura to devote more time to the barriers within the hospital administration: how can the Ponseti Method become the gold standard for clubfoot treatment in Sao Paulo?
Although it is challenging, it is possible. Changing a life can begin at any moment. miraclefeet is excited to have Dr. Laura as the first champion making these changes possible.
Idealistic? Or realisitic with time...miraclefeet visits Botucatu
In an ideal world, every child born with clubfoot would have access to the Ponseti Method for treatment. Each child would make weekly trips to a nearby hospital, where doctors passionate about and committed to the Ponseti Method would cast and fit braces with their team of technicians and residents. Braces would be affordable and social programs would be in place to help support the families throughout the entire treatment regimen. Is this ideal possible?
Although not entirely the ideal I just described, the miraclefeet visit to Dr. Volpi’s hospital in Botucatu was very impressive. It was a reminder that with improved access to resources and medical expertise, the Ponseti Method can impact, treat, and change lives of children in Brazil. Dr. Volpi and his Ponseti team at Universideade Botucatu currently treat 100 clubfoot patients. Because of the Ponseti Method, he has not operated on a single clubfoot patient in 9 years. Dr. Volpi spends 4 mornings each week at this university hospital, which he refers to as a “great place to work.” This hospital, which was built as a TB hospital in, is incredibly well organized, with green space for families and portraits of doctors lining the halls of the main corridor. “I’ve walked this corridor for 30 years now,” Dr. Volpi said as he strolled respectfully, yet confidently down the echoing hallway, reminiscing on the days when he was a medical student here. It became clear to us during our visit that Dr. Volpi has seen this hospital grow, change, and expand, and his work with the Ponseti Method has contributed to this process.
Dr. Volpi’s team of residents is highly involved in the treatment process, a result of his mentoring and commitment to training residents in the Ponseti Method. “Without the residents learning Ponseti,” he said, where would the future be?” This morning during the clubfoot clinic, Dr. Henau, a 3rd year resident, assisted Dr. Volpi with casting. A first year resident also took part, although he was primarily responsible for completing paper work, cleaning up after the casts, and observing Dr. Volpi and Dr. Henau’s work. Dr. Volpi advised and observed Dr. Henau, although Dr. Volpi delegated most responsibility to Dr. Henau. The working relationship between Dr. Volpi and his residents was wonderful to watch – it was fatherly and kind, instructive and patient.
The clubfoot clinic at Universidade Botucatu takes place in two adjoining rooms, each equipped with at least one exam table, a sink, counter space, and shelves of medical supplies, including the poor quality braces provided by the Brazilian Government. Because of the poor quality braces, mothers are often forced to purchase their own $100 brace, which are difficult to impossible for the large majority of mothers to afford.
On clinic mornings, mothers arrive with their children at 7:30 am, in time to soak their child’s casts in warm water tubs. In this calm yet welcoming clinic, mothers and their children stand together as they wait to be seen, chatting with each other and catching up on the events of the past week. A new mother, whose 23-day-old baby received his first cast on this morning, learned about the tenotomy from other mothers while she waited for Dr. Volpi. By the time her son was casted a few hours later, she said she felt “no stress, no stress.”
Some patients, such as this 23-day-old and his mother, travel nearly 100 kilometers by bus to arrive at the hospital. Others live in Botucatu and only travel a few kilometers to the hospital. Some of the patients have already had 10-15 casts, are perfectly compliant, yet the feet are resistant to change. Others need only a few casts to correct the feet. Some can afford good quality braces, while others must use the recycled government-purchased braces. There are no clear answers to these predicaments. There are, however, doctors in Brazil who are resilient, committed, and eager to train the younger generation. There are mothers who want their children treated. And there are hospitals that, with help, can facilitate and foster the Ponseti Method. Although reaching the ideal world for the Ponseti Method will not happen overnight, it is a process that requires patience, knowledge, exploration, time, and the miraclefeet commitment.
Davila and her mom woke up at 4 am in order to leave their home in the interior of the state and catch their 5am bus to São Luís. Once they arrived at the hospital at 8 am, they waited until 11 am to be seen. The bus ticket cost $25 each way. Davila is a sweet 7-year-old girl, who wore a striped zebra print shirt with bubble gum pink pants and her hair meticulously twisted into many small buns covering her head. On this morning, she clenched her water bottle between her two hands as she sat nervously on the exam table waiting for Dr. Acyr. Dr. Acyr also does the Ponseti Method, working closely with Dr. Leopoldina in the orthopedic unit of the hospital.
On this morning, Davila was casted for the very first time with a Ponseti cast. A visiting orthopedic surgeon in her village had tried the Kite Method (casting followed by invasive surgery). When the treatment did not work, he gave up. Since then Davila’s mother has helped self-correct the foot by telling her daughter to avoid walking on the side of her foot, but instead to step on the point of her foot pushing her heel down. This had resulted in some improvement. Dr. Acyr was confident that he could correct the residual deformities using the Ponseti Method and he got to work quickly. As he finished the second cast, we asked Davila’s mother how Davila will get around school on her own with both legs casted. She said that she is not concerned about Davila getting around in school: “her teachers will have to pick her up and take her to the bathroom when she needs.”
Although Davila and her mother must travel many hours to see Dr. Leopoldina and her team, paying expensive bus fares on the way and waiting long hours in the waiting room, Davila is finally, aged seven, getting treatment that will allow her to walk properly. She will live a healthy, productive life without a physical disability. This is our goal for all the children born with clubfoot in Brazil. Thanks to the Ponseti Method, treatment can come become a real option for children in Brazil. By providing additional support for the families and doctors, miraclefeet can help make seeking and delivering the treatment easier and thus more viable for more children.
A degree from the equator...miraclefeet in São Luís
Brazil is a country of contrasts, evident in its landscapes, people, health system, and economic conditions. Our visit to São Luís reaffirmed this observation. Similar to other cities, luxurious high-rise apartments stand out above sprawling urban slums. In São Luís, however, there are especially distinct lines between the rich and poor parts of the city. This physical segregation and division between classes is difficult to overlook.
São Luís is the capital of the Brazilian state of Maranhão, in the northeast of Brazil. The city’s two large seaports facilitate export of much of Brazil’s iron ore, which originates from the Amazon region in the interior of the state. The French originally colonized São Luís, although the Portuguese took control of the city in the 17th century. The remnants of this colonized past remain: São Luís’ historic center has been named a UNESCO World Heritage site. Although not yet a popular tourist destination, the historic center offers a charming setting of colorful buildings, ornate tiles, Portuguese stone staircases, terra cotta rooftops, and the rhythms of capoeira music flowing through the streets.
Unlike the historic center’s charm, São Luís’ hospitals face similar challenges to other hospitals we visited in the northeast of Brazil. Patients travel long distances to the hospitals from villages where many adults live with untreated clubfoot. The patients and their families arrive to the hospital after paying expensive bus fares, only to wait for hours before seeing a doctor. And in the clubfoot clinic, parents remove their children’s casts before the next Ponseti treatment in the reeking filth of the hospital bathroom. The conditions for the Ponseti Method are far from ideal. Parents must have resolve, patience, and a confidence in the Ponseti Method to ensure their child completes the entire treatment regimen.
In São Luís, the doctors also contribute to the success of the Ponseti Method. We met with Dr. Leopoldina de Silva Leite, a kind, gentle, and composed doctor who works 4 days a week at Hospital Universitario Materno Infantil (UFMA) in São Luís. In 2006, Dr. Leopoldina met Monica Nogueira, who trained her in the Ponseti Method. Since then, she has treated 150 patients with the Ponseti Method. Dr. Leopoldina also claims that all the pediatric orthopedic doctors in the two public main hospitals use the Ponseti Method, which sets São Luís apart from the other cities we have visited.
Like Dr. Guillermo and Dr. Ana Claudia, Dr. Leopoldina works additional days each week at a private clinic to make enough money to support her family. Dr. Leopoldina has dreams of improving the lives of children with clubfoot in São Luís, telling us about her idea to build a guest house for families in São Luís to stay in during their treatment at UFMA and her desire to buy some plastic tubs for soaking the children in so they can avoid the dreadful bathroom. “100 percent of patients at this hospital are poor,” Leopoldina told us on the drive from the airport to our hotel in São Luís. “They travel from far away to be treated. Despite the challenges, the hospital is very well organized and doctors are generally happy working here.” Our tour in the hospital’s neonatal unit, orthopedic unit, and clubfoot clinic the next day brought life to Leopoldina’s words.
The clubfoot clinic the next morning at UFMA was a frenzy of activity, although the doctors, nurses, casting technician, and residents all seemed accustomed to this fast working pace. Today the doctors had been temporarily relocated to two adjoining rooms across the waiting room area. At one point, 3 doctors, 2 nurses, 1 casting technician, 3 residents, a university photographer, and the miraclefeet team were all crowded inside these two very small rooms. Everyone worked together, documenting patient records, casting new patients, photographing, and moving quickly enough to the next patient so that everyone in the waiting room could be seen. At the end of 2 hours, Leopoldina said they had seen 22 patients.
Dr. Ana Claudia: A persevering and dedicated leader in the Ponseti Method
We left the winding streets, spicy seafood, and colorful architecture of Salvador for our next destination: Maceió. This more tropical coastal city has a population of about one million people and is the capital of Alagoas, another relatively poor state that depends on sugar cane as one of its primary sources of income. We traveled to Maceió in order to visit Dr. Ana Claudia Falcaó, a renowned doctor in Brazil and beyond for her pioneering results in treating children as old as sixteen with the Ponseti Method. She has pushed the frontiers of the Ponseti technique, beyond even what experienced doctors in the United States believed to be possible. Ana Claudia’s medical breakthroughs inspire the current work of miracefeet in addition to its plans to operate in countries where even more children live with the indignity of untreated clubfoot.
Dr. Ana Claudia moved to Maceió from her hometown in southern Brazil in order to attend medical school. After residency, she began practicing orthopedic surgery at Hospital Açúcar, one of two public hospitals in Maceió. After a number of years, she became increasingly dissatisfied with surgery as the standard treatment for clubfoot. “Surgery,” she insisted, “is not only invasive for a child and his or her family, but it does not work. It does not fix the foot and it complicates the child’s medical condition later in life.” Weeks after making this assertion, the chief of surgery at Hospital Açúcar handed her an article from a 1963 issue of Journal of Bone and Joint Surgery, co-authored by Dr. Ignacio Ponseti. “This may be what you are looking for,” the chief said to Ana Claudia.
After reading the article ten times cover-to-cover, she began treating kids, carefully following Dr. Ponseti’s precisely described steps. Despite no formal training, her hands worked magic on children’s feet. Ana Claudia achieved incredible results. Children that came to her with crooked feet left able to walk, run, jump, and skip. Eager for more support, Ana Claudia used the Internet to track down Dr. Monica Nogueira, widely regarded as Brazil’s most vociferous and ardent champion of the Ponseti Method. Dr. Nogueira was amazed with Ana Claudia’s results and arranged for her to attend a training course with Dr. Shafique Pirani (University of British Columbia) in Sao Paulo in 2005. In 2006 Dr. Falcaó traveled to the University of Iowa to learn from Dr. Ponseti himself.
Ana Claudia is fascinated by what she can do with the Ponseti Method and lights up when she talks about the older children she has treated. “I enjoy the challenge of treating older kids,” she says as she describes the different cases of children ages 6, 10 and 16. The opportunity to take on the most difficult cases motivates and inspires her. She is about to start to treat a 20-year-old man with severe clubfoot, who has never received any treatment. “It will work. I can help him”, she says with utter conviction.
Despite her excellent reputation within the Ponseti community, Ana Claudia struggles. She has not been paid for her work at Hospital Açúcar in two years. The hospital administration is in disarray and only the surgeons are paid. She still sees her patients by special arrangement at the Hospital, but it costs her money. She has to pay for gas, childcare for her infant twins, and money for Vanuza, her casting technician. She juggles many different jobs in order to make ends meet, in private orthopedic clinics, another general public hospital, and the mayor’s office. She fears that she will not be able to take on new patients due to the dire situation at Hospital Açúcar.
She shakes her head when we ask what will happen to all the new babies who are born with clubfoot in Alagaos. “They will have surgery or no treatment at all.” The other orthopedic surgeons in Maceió continue with surgical treatment, lacking the patience and interest in the Ponseti Method despite her remarkable results and her attempts to train them. Plus, they get paid if they do surgery.
In addition to battling a system that favors surgery, she struggles to convince the parents to stick with treatment. Poverty, distance and a lack of education all contribute. Once the parents see that the feet are corrected after 3 or 4 casts, they stop coming. Ana Claudia has treated 300 children, but she estimates that only 60 to 80 have completed the entire casting and bracing regimen. To illustrate this point, she points to a destitute area of shacks and mud structures on the outskirts of Maceió, “Sometimes I see one of my patients here as I drive past this slum. He stands on the sidewalk, unable to walk properly. I was treating him, but his family is very poor. He disappeared after three casts. What can I do? If they don’t bring him I cannot help him.” Ana Claudia shook her head and took a deep sigh. She does everything she can to help, but there are many structural and social limitations to her efforts.
Luckily, Ana Claudia remains positive. Maybe our visit helps. We talk about ways miraclefeet can help her. We can provide financial support so she can continue her work, despite not being paid by the hospital. We can provide braces and money for the patients’ long bus trips to the hospital. We can share what Dr. Ferreira and Dr. Tierno do to help with compliance. And perhaps, just as important, we can provide her with moral support to keep her going in a very challenging environment.
Deborah is a sweet five year old, who gave Dr. Guillermo a huge hug and a beaming grin when she came into his room. She looks completely normal in her sparkling pink shoes. Dr. Tierno watched Deborah walk across the room, stand on her toes “like a dancer” and stand on each leg. He smiled, “She has great feet”.
Deborah and her mother, who looked about 24 years old, have been making the five-hour bus trip to see Dr. Guillermo since 2006. She was born with bilateral clubfoot and was treated with 7 casts and is still wearing her brace at night. Dr. Guillermo was very happy with what he saw (“Beautiful feet, beautiful feet”, he said with great pride) but he wanted Deborah to keep continue with the brace at night for three more months to address a slight imperfection in one foot. Deborah and her mother did not seem bothered by this news. They put the brace on and showed Guillermo how the brace fit. Smiling, said she did not mind wearing it.
Dr. Tierno then looked towards Deborah’s mother’s feet. “She has clubfoot too, treated with surgery when she was a child”. She picked up her feet to show long scars and large, rough callouses along the outside edges of her feet. One heel does not touch the ground, she is in constant pain and she walks with a limp. “I have offered to treat her with Ponseti. I could really help her. But it is hard for her to deal with casts now. How would she take care of Deborah and go to work?”
No wonder this mother has been so committed. She knows the agony that she is preventing for Deborah. Here in Dr. Guillermo’s office was clear proof of extraordinary effectiveness of the Ponseti Method, the critical importance of casting clubfoot children when they are babies when it is so much easier, and the role the family needs to play. Deborah is one lucky girl!
The challenges Alino faces:
Guillhermo’s second patient, Alino, a large-eyed seven year old with a cheeky grin, is not such a success story but reflects the real challenges faced in delivering healthcare in a country like Brazil. Alino had uni-lateral clubfoot which Dr. Tierno began treating as a newborn. After four casts and a tenotomy his foot was fully corrected.
However, when Alino was one years old his mother left, leaving his grandmother to care for the child. The grandmother was unable or unwilling to travel the 200 kilometers to the hospital for follow-up visits and Alino stopped wearing his brace. The mother was now back six years later with her son and his relapsed foot. Luckily, it was not as bad as one would expect given the lack of care. The case was a straight forward one; Alino still had a lot of flexibility and could walk on the foot, although imperfectly. Guillermo still remembered her and shook his head. “I can get this foot back with two casts –he is fortunate – it is an easy foot.”
He explained to the mother and Alino that he would need to return for another cast. Alino’s bright smile disappeared as he tried to hold back the tears. He was seven now – being in a cast would not be much fun. “Don’t worry. Come back in November, when school is done for the year. We can get the two casts finished during the summer vacation.” The mother nodded. And they quietly left the room.
“They won’t take care of a boy in a cast properly at school. It is better that he is at home when we treat him.” Guillermo explained. “Will they come?” I asked. Guillermo shrugged his shoulders. “She is not like the last mother. I don’t know if she will bring him back. But I hope so. It would be criminal not to finish treatment of this child. It is such an easy case. He can have a normal foot. It will take so little to fix it.” and he continued to the next patient - a two week-old with a severe case of bilateral clubfeet that a grandmother had brought in for her first treatment.
Alino’s mother may do her best to bring back in November. But it is clear that it will not be easy. Not much money, lots of travel time and a seven year old who will not like being in a cast. He will also need a new brace now that he is bigger. All part of the clubfoot challenge that we are here to address.