Last week we held the first meeting for our new parent text messaging program, Step by Step – Paso a Paso - at Hospital Velez Paiz in Managua, Nicaragua. Thirteen families are participating in the test of the system and we held a focus group in order to get their input on its initial design. The families are very excited about testing the program. Many have expressed feeling isolated and alone during parts of their child’s clubfoot treatment and they are pleased that they and other parents are now receiving support and information to help them navigate their child’s long-term treatment. Our miraclefeet program manager, Lauren Wall, is working with Mackensie Yore of Stanford University, who designed the project, and NC State University student Taylor Craig, the miraclefeet intern who has been managing the project. Here are a few quotes about the project from the parents who participated and some photos of the focus group:
- “When I [first] saw her feet, I never thought this would be possible. Now they are so straight.”
- “Thank you for doing this. Before, there was no information about clubfoot.”
- “When can we do this again?”
- “The text messages were a great motivation for me, to give me encouragement to keep going.”
- “I would tell [other] new moms with children with clubfoot, be strong!”
We are thrilled to measure the success of this new component of the parent support program and to help bring it to our partner clinics across the world.
“I feel good here because the doctor is very patient with my son. That’s so comforting for me as a mother, to see that they treat my child with affection and love.” -Bruce’s mom
Support from parents is so important to treating clubfoot. While our partnering doctors and nurses thoroughly and efficiently treat patients, the real work happens at home.
Kids must return for new casts each week.
Once casting is completed, for three months they need to wear their braces 23 hours per day. Then braces are worn only during naps and at night until they age of four or five.
These children are often very young, maybe even only a few months. So much of the responsibility falls on mom and dad to make sure their kids are completing treatment and wearing their braces.
And Bruce, a 7 month old patient in treatment at a miraclefeet partner clinic in Leon, Nicaragua, is very lucky to have parents who exemplify this commitment. Since discovering miraclefeet’s clinic, Bruce and his parents have not missed one appointment. Bruce’s mother and father come to the clinic with him every Wednesday and stay at his side while he gets casted, sharing the love that only a parent can give.
And Bruce’s doctor is committed too. Dr. Balladares in Nicaragua even came in to the clinic on his week of vacation to change casts for his Ponseti patients. Like Bruce’s parents, Dr. Balladares goes above and beyond to ensure treatment is successful. “I feel good here because the doctor is very patient with my son. That’s so comforting for me as a mother, to see that they treat my child with affection and love,” said Bruce’s mom.
With the devotion of his parents and doctor, Bruce will be walking, running and playing someday very soon.
His mother traveled five hours by foot and crowded bus, skipping meals and fighting nausea, all to get her son treatment.
Wilder, now three years old, was born with bilateral clubfoot. As an infant, he was casted to correct clubfoot in his hometown. But there were no results, as is often the case when children are improperly casted. Wilder’s mother was hesitant to try treatment again.
But her friend convinced her to give treatment one more chance. With her friend’s encouragement, Wilder’s mother agreed to travel, for the first time in her life, to Nicaragua’s capital, to consult with a doctor professionally trained in the Ponseti Method.
Upon seeing the improvement in Wilder’s feet, his mother was determined to complete treatment, meaning weekly visits to Managua. It also meant severe nausea for Wilder’s mother, who struggled with the long, cramped bus rides from San Lorenzo-Boaca to Managua.
And it meant sacrificing for her son’s well-being. On one occasion when Dr. Sequeira, a partnering practitioner with miraclefeet, finished casting Wilder, his mother suddenly fainted. Only then did she admit that she had not eaten anything that week, so that she could afford transportation for her son to visit the clubfoot clinic.
These are the sacrifices the devoted, caring parents make—and this is how important clubfoot treatment is. And for Wilder’s mother, it is all worth it watch her son joyfully walk towards her on beautifully corrected feet.
Remember Jorgito? We first met him back when miraclefeet Program Manager Lauren was visiting our partnering clinic in Nicaragua.
Everyone is so excited for Jorgito’s transformation, no more so than Lauren who has watched him throughout this journey: “Seeing Jorgito walk, slowly but surely, and giving him a high five, seeing how happy he and his parents were, reminded me of how amazing and life changing this work is.”
Now take a look at these pictures of Jorgito and his incredible progress!
Here are Jorgito’s feet a year ago, before treatment…
And here are Jorgito’s feet today, after castings…
This is the dramatic change possible with the Ponseti treatment. We are so happy for Jorgito and can’t wait to be a part of even more transformations around the world!
The other great part about clubfoot treatment? The smiling faces. :)
“That’s the thing about working this job day in day out. You know the miracle will happen, but every once in a while, a kid will really drive that home as remind you how amazing it is.” -Lauren Wall, miraclefeet Program Manager
Lauren’s back in Nicaragua, and this time, she shares with us a story about an amazing child named Jorgito:
Jorgito is a young boy born with clubfoot, who has lived five blocks from a hospital his entire life. And he never got treated.
But all of that changed a little less than a year ago. miraclefeet partnered with Ponseti International to conduct a training at the public hospital right outside Jorgito’s backdoor. After this training, the Ponseti program at the hospital picked up speed and notoriety, alerting children and families around Nicaragua that accessible and affordable treatment was available. And one of those children was Jorgito.
At the time, he was five years old and had never been treated. His feet were a mess and heartbreaking to see. miraclefeet Program Manager Lauren met Jorgito in May when she visited Nicaragua. He was on his fifth cast at the time. And his parents were ready to give up. Already at five years old, children have learned to walk in a painful, modified way on their clubfeet, and if not diligent, the treatment can seem slow. Unfamiliar with the process, Jorgito’s parents pushed for surgery. But miraclefeet’s partner doctors explained to them what we know to be true—the Ponseti Method is safer, less expensive and successful in 95% of cases. It is the gold standard for clubfoot treatment in developed and developing countries.
Parents cannot be expected to know this though. Once again, the importance of good counseling and communication between doctors and parents is essential. (You may recall our story about Marli (http://miraclefeet.tumblr.com/post/28568642062/story-behind-photo-of-the-day-marli-and-me), an amazing nurse in Brazil, who devotes substantial time and effort to educating families about treatment. It is the key to continued success.)
Lauren returned to Nicaragua last week. And she was pleased to see Jorgito back—and in a brace! Not only were his castings completed, but he had been in the brace for 15 days, 23 hours a day. And he is already able to walk during his one hour off!
Everyone is so excited for Jorgito’s transformation, no more so than Lauren who has watched them throughout this journey: “Seeing Jorgito walk, slowly but surely, and giving him a high five, seeing how happy he and his parents were, reminded me of how amazing and life changing this work is.”
Here’s to a million more high fives.
miraclefeet Program Manager Lauren sent us an update from Nicaragua, where she’s been checking in on one of miraclefeet’s clinics! Here are her experiences so far:
I got to spend the day in our partner clinic in Managua, Nicaragua. Sweet Melvin (pictured above) came in for his 3rd set of casts for his bilateral clubfeet which had never been treated before this year. Melvin is 7 years old. I asked him questions and he shyly turned away. Dr. Sequeira then told me, “Melvin speaks English!” so I spoke to him in English instead of Spanish. Melvin opened right up! Melvin comes from a town called Laguna de la Perla which is located on the Atlantic Coast of Nicaragua in the RAAS - Autonomous South Atlantic Region. Many inhabitants of Laguna de la Perla, like Melvin and his mother MaryLou, are Creole Nicaraguans, descendants from escaped or shipwrecked slaves. The Atlantic Coast of Nicaragua was under British influence until the late 19th century.
The region is sparsely populated and has limited access to the larger cities of Nicaragua, such as Managua. For 7 years, Melvin’s family thought that clubfoot could not be treated. Finally this year, they heard about the Ponseti Method and learned that it is being practiced in Managua. MaryLou and Melvin traveled over 24 hours to reach Managua, where luckily they have family to stay with, and Melvin has faithfully come to all of his casting appointments. At these appointments, Melvin stoically braces himself and does not cry while Dr. Sequeira reverses the clubfoot and the years of damage done by his walking. Melvin also has spina bifida, which further complicates his treatment, as his feet are quite rigid.
Melvin and MaryLou (pictured below) miss the rest of their family, especially Melvin’s two brothers, and staying in Managua, a strange, large city, has been difficult for them. They eagerly look forward to returning to Laguna de Perlas, but not before Melvin’s treatment is finished. He and MaryLou could never give up on such an old dream - for Melvin to walk, run and play with his brothers.
miraclefeet is excited to be working in Nicaragua and making the Ponseti Method available to children like Melvin. And we are ready to expand these efforts. In 2013, miraclefeet plans to launch a clinic on the Atlantic Coast of Nicaragua.
We are confident that soon, all the other Melvins of Nicaragua won’t face long and difficult travels, but instead will have accessible and affordable treatment in their backyards.
To see more Photos of the Day: twitter.com/miraclefeet
Pictured above is a mother with her infant child, a talipes patient at the miraclefeet partner clinic this June in Nicaragua.
Initially, this mother was bringing her daughter to get casted at a local hospital. But soon, her husband, a nurse, sensed that something was not right with his daughter’s castings. He and his wife decided to pull their baby from the hospital treatments. A risky move, but one that turned out to be right—a father’s intuition. The family came to the miraclefeet clinic to try and get proper treatment for their daughter. The expert doctors at the miraclefeet partner clinic immediately recognized that the girl’s father was right, and set about casting her properly.
Today, the family in Nicaragua is happy with their daughter’s progress. In the Photo of the Day, you can already see the positive effects proper application of the Ponseti method can and do have.
See more Photos of the Day on our Twitter: twitter.com/miraclefeet
Recently I posted a photo on Facebook of a 15 day old little girl named Fatima, in Managua. She was getting her very first casts.
Fatima was brought to the clinic by her mother and aunt - they showed up towards the end of the clinic. Fatima was just 15 days old and had bilateral clubfoot. Dr. Sequeira asked her mother if she had been told why her child’s feet were turned and she started to cry. “No,” she said, “they told me nothing - just that I should come here.” Fatima’s mother didn’t even know that it was called clubfoot, or that it was easily treatable.
Dr. Sequeira explained the process to Fatima’s mother and the importance of the cast changes and that later Fatima would wear a brace. Her tears continued, but when Fatima’s perfect little casts were finished, she picked her up and promised to return the next week early in the morning.
It was wonderful to see Fatima, her mother, and her aunt already at the clinic - the 2nd patients in line! Her mother was happy and laughing and loved seeing the change that just the first casts had made!
Chesca, miraclefeet’s Executive Director, and Roger Berman, Chairman of the miraclefeet Board were recently in Managua, visiting miraclefeet’s program at Hospital Velez Paiz. The clubfoot clinic is run by Dr. Mario Sequeira and treats over 90 children using the Ponseti Method. Dr. Sequeira is seeing a lot of older neglected clubfoot cases and getting remarkable results with children as old as 10 years old who have never been treated. He is also increasingly seeing newborn babies so word is getting out that treatment is available for free at his miraclefeet Velez Paiz clinic.
A large part of our trip involved working with Dr. Sequeira to determine how we can develop a national program with additional clinics and support for families who need to travel long distances to get treatment. In three days, we were able to develop a plan, reach agreement with two new hospitals and identify ways we can raise awareness that clubfoot is a treatable condition.
Dr. Sequiera will be appointed miraclefeet Medical Director in Nicaragua and will manage the initial expansion until a local coordinator can be hired. Dr. Jose Morcuende, Medical Director of Ponseti International will provide additional training in Leon for orthopedic surgeons from Leon, Esteli and Juigalpa. This will be followed up with miraclefeet financial and organizational support for three new clinics. We were also able to identify a local orthotics and prosthetics workshop that have agreed to make clubfoot foot abduction braces at a lower cost than the currently available braces. In the meantime, miraclefeet is sending recycled braces and braces purchased in Kenya and Bangladesh to fill the short-term need for low cost, quality braces. We will continue to provide funding for Dr. Sequeira to order larger sizes from the local provider since large braces are harder to obtain elsewhere.
This is an exciting development and a strong indicator that miraclefeet’s approach of empowering local doctors to solve the issue of clubfoot in their own country works. miraclefeet is confident that, with these new clinics, Dr. Sequeira and miraclefeet will be able to develop the capacity to treat every child born with clubfoot in Nicaragua over the course of the next three years.