Guest blog: miraclefeet videographer Jake Wachtel

"Ranjeet limped to his doorway, waving goodbye to us and beaming an enormous smile.  Grasping his pinky and walking alongside him was his little boy, Pradeep.  My eyes traveled down one last time to their feet.  Ranjeet stood painfully on the sides of his feet, which were turned inwards—a result of neglected clubfoot.  His son’s feet were perfectly normal, and he could move around effortlessly.  What was incredible about this scene is that when Pradeep had been born, less than two years previous, his feet looked exactly like his father’s.

As a documentary filmmaker, I had come to Mumbai to get some footage of a new miraclefeet-supported clinic at the Wadia children’s hospital, where I met Ranjeet and his family.  His son was recieving free treatment at the clinic.  Ranjeet graciously allowed me to capture his story (which you can see here: http://vimeo.com/86618225). 

The experience of spending time with Ranjeet exemplified why I have been so honored to work with miraclefeet, visiting their partner clinics in India, South Africa, and Brazil.  It is easy to be impressed by the numbers around clubfoot—that it affects 1 in 750 children, and that miraclefeet can fully treat a child for $250.  But when you actually get to spend a whole day with a family, it really drives home the impact of the treatment on each individual child, and by extension, their families and communities. 

It was extraordinary to me how happy Ranjeet was, especially given how much hardship he had endured.  He related stories of being endlessly excluded as a youth, and the extreme challenge of getting some one to hire him for even the most menial jobs.  He now worked long and dangerous hours alongside his father as an itinerant construction worker, setting up temporary homes in hi-rises as they were being built.  I sat with the family in the single room where they cooked, ate, and slept, and little Pradeep gladly demonstrated what his father had told me in the interview—that he is incredibly active.  He was spinning around, laughing, playing games with everybody.  Children from other families in the building came by to play with him, but his biggest fan was clearly his big sister.  There was such a palpable sense of hope in this dark cramped room.  Grandma and Grandpa, mom and dad, knew all too well what fate Pradeep had escaped by getting treatment for his clubfoot.

I encountered many such remarkable stories in the India clinics, like the mother whose in-laws beat her for giving birth to a “cursed” child—she left her husband’s home (quite unthinkable in traditional circles) in order to get treatment for her child.  I met a grandmother who has taken it upon herself to come to the clinic where her grand-daughter was treated to counsel other parents in the importance of treatment.  Everywhere I looked, there was such a deep sense of gratitude in the eyes of the parents.

Not only did I meet many families, but I also got to know the counselors, whose job it is to explain the treatment, answer questions, and follow-up with families over the years-long bracing phase of treatment.  This is instrumental in preventing relapse, not just because counselors catch families who fall through the cracks, but because this relationship empowers families with information and involves them in the process.  I’ve spent a lot of time now in the chaotic environment of public hospitals in India, and I can only imagine how overwhelming it must be for a poverty-stricken family coming in, perhaps for the first time.  The emphasis on the counselor program deeply humanizes the process, and watching counselors interacting warmly with the families, treating them as partners in care (in what is often a highly stratified society), was a profoundly moving experience.

I came away with a much better understanding of how well the clinics are run, how the diagnoses, casting, and bracing work.  It’s an incredible system.  But what will stick with me most is that image of Ranjeet standing in his doorway, smiling.  That’s the reason why I do what I do, and why I’m grateful to work with miraclefeet.”

 

Jake Wachtel is a freelance filmmaker specializing in work for non-profits and educational institutions. Learn more at www.jakewachtelmedia.com

Songbirds and Buttons: A guest blog post about Levi’s clubfoot journey from mom and blogger Kendall Rayburn

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When we found out we were pregnant with baby #2 we couldn’t have been more thrilled. We had been trying for over a year - and had been battling to conceive.  After a year we decided to give Clomid a go, and the next month - we were pregnant. Things were going wonderfully, each ultrasound was perfect, and as the days went by I was overcome by the amount of gratitude I felt. Because I truly didn’t believe I would be able to have a second child, I felt like endometriosis would take that from me. But it didn’t. My son Wyatt, was getting a sibling. He was getting a baby brother. And we decided his name would be Levi.

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I didn’t have a rough pregnancy, other than being a little uncomfortable. I was hitting all of requirements, moving smoothly along, until I hit 21 weeks.

Here’s what happened..

21 Weeks Pregnant:

"Yesterday we went in for a routine anatomy ultrasound at the hospital. The ultrasound tech zoomed in so we could see our little ones toes, hands, and body. I laid there holding Williams hand and we both watched our little guy wiggle on the screen. After the ultrasound was done the tech told us to wait there and that she was going to grab the doctor.

A woman entered the room and said she was going to double-check some things – and picked up the instrument and began scanning. She asked me if I had the chromosome screening and I told her no. She continued to scan and I blurted out..

Is there something wrong?

She looked over and told me that yes, they saw some abnormalities. Our baby had one clubbed foot and two large cysts in his brain. Which is a sign of Trisomy 18. She then explained our options for testing and said that if the baby was born with Trisomy 18 we would have the option to terminate the pregnancy. And because I was 21 weeks along – and legally this can only happen until 23 or 24 weeks – we needed to move fast.

I remember just crying on that table, squeezing Williams hand to pieces. I remember William crying. 

She took us into her office and pulled out a giant book with pictures and diagrams and information. She explained what Trisomy 18 was and what the outcome would be.

She said 50% of the babies with this are born stillborn. And if somehow he makes it through birth – his life expectancy would only be one year. She said he would be severely mentally disabled and  have no quality of life. Most babies only last a few days after birth.

 After we spoke with her, we confirmed that we wanted to have the testing procedures done. And then when I got up to change into the gown a strange sense of calm swept over me. I kept thinking I can do this – it’s going to be okay.

I changed into the gown and went into the ultrasound room where they performed an Amniocentesis. I couldn’t watch them do it – I just had my head turned and looked at William the whole time. I felt as the needle poked through my stomach and was pushed deeper to get to the amniotic fluid. It all seemed to happen fast – and we were out of the room in 10 minutes.

 I put a band-aid on my stomach, got dressed, and we left.”

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I had to share that full post. Because it was one of the worst days of my life, and I honestly couldn’t re-visit to write about it. We left that doctor’s appointment, devastated. The doctor was telling us she had never seen cysts that large - and the cysts she had seen that were similar in size were in the heads of babies that didn’t make it. William and I spent the whole week waiting for test results. I spent most of that week in bed, sobbing. And the worst part was I could feel little Levi within me, kicking, moving.

I remember sitting on the couch with William - feeling Levi kick.

I told William I thought that was Levi’s way of saying “don’t give up on me”. 

On July 17th, 2013 the results came back. Levi DID NOT have Trisomy 18. We were told he would still need surgery to remove the cysts and that he still may have some brain damage. And, we knew he had clubfoot. Weeks went by and we were still in transition. We had spent an entire week thinking we wouldn’t have our baby, and then all of a sudden, we knew we would.

Then, something absolutely wonderful happened. We went in for another ultrasound and Levi’s cysts were GONE. The technician and doctors were stunned, they had never seen this happen before. 

The same people who told us they were 99.9% sure that Levi wasn’t going to make it were now telling us he was FINE.

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Everyone asked us if we were mad. If we were going to march into the doctor’s office and yell. But in that moment, all we could do was be grateful. We had prayed and begged God to help us. My husband’s mother Kathy had passed away years earlier from cancer and we would sit together and talk to her most nights during that difficult week. I asked her to watch over Levi if he somehow ended up in heaven with her. I asked her to do anything she could to help us. And in my heart, I feel like the reason Levi is here today - the reason those cysts disappeared - the reason that those tests came back fine - that is all because of her.

Levi was born on Halloween. He was born with bright blue eyes, and still has them to this day, just like his nana Kathy. None of us have blue eyes. That is Kathy, her spirit, her love, shining through in her grandson. 

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So, after all of that. After that roller coaster, when we were sure the only thing we would have to deal with was clubfoot, we were relieved. And after Levi was born we met with a wonderful doctor and started the Ponseti treatment with a series of casting.

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We had six weeks of casting before little Levi was ready for his boots and bar. After six casts, his little foot had already made so much progress.

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I’m not going to lie - the casting process was no bed of roses. Levi was fussy when he tried to fall asleep at night but he was comforted by swaddling and snuggles. After the fifth cast, Levi had surgery to clip the Achilles tendon to help release his foot, he was then casted with cast #6 and that cast was left on for a few weeks while he healed.

After the sixth (and final) cast was removed, he was ready for his new shoes.

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Levi did worse with the shoes than he did with the casting - but after a few months he got used to the shoes and did wonderfully! At first he had to wear the shoes 23 hours per day - this lasted 3 months. After that, he was moved down to 18 hours per day.

Levi is now 9 months old. He continues to wear his shoes 18 hours per day, and his foot continues to correct itself. He is a happy, outgoing, and loud baby. He laughs ALL the time, smiles ALL the time, and is completely used to his boots and bar. His doctor thinks by the time Levi is two he will be cut down to 12 hours a day on his boots - this would mean he would only have to wear them while he sleeps.

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His feet look wonderful and he is scooting all over the floor even with his boots on. He inspires me every single day to push further and do more. His spirit, the amount of fight he has in him, and his strength is just unbelievable. He is one of our greatest blessings and we feel so lucky to have him in our lives. He spreads happiness everywhere and hasn’t come across a single person that he couldn’t get a smile out of.

I should have known that night on the couch, when I felt those kicks - that everything would be just fine.

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Kendall Rayburn
Songbirds & Buttons
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Reflections from Barcelona: International Clubfoot Symposium 2014 

The miraclefeet team recently had the privilege of attending the International Clubfoot Symposium in Barcelona, a biennial event organized by Ponseti International Association.  This event brings together extraordinary people who share the goal of helping children born with clubfoot around the world: parents, physicians, healthcare workers, non-profits and donors.  For those of us who work full-time in this field is it wonderfully energizing to be surrounded by others who care as deeply as we do about preventing the unnecessary disability caused by untreated clubfoot.

While the formal presentations were interesting and informative, as is often the case, it is what happened informally that was so exciting.  Our team was in constant motion all day long:

  • huddling over a cup of coffee with a partner to discuss how a new program is going in Tanzania
  • gathering all the Mexican representatives together over lunch to brainstorm about how to take a two-year program to the next level of becoming a fully-fledged national movement
  • having ad hoc conversations over the afternoon cookie break to connect with a doctor who wants to start a clubfoot program in Bolivia
  • putting the miraclefeet brace into the hands of some of the world’s leading experts on clubfoot bracing to get immediate feedback and reactions
  • meeting other non-profits over a few drinks to brainstorm how we can share materials, collaborating and coordinating to avoid duplication of effort
  • hearing from clubfoot parents about what it took for them to make sure their children received the treatment they needed
  • enjoying a wonderful dinner of pinchos and Spanish wine with experienced and dedicated people from all over Africa, Latin America and Asia, each bringing their own stories of successes and challenges in trying to promote clubfoot. 

This event provided so much opportunity to learn, to share and to develop new ideas and ways to work together.  But even more importantly, being with others who care so deeply about the same issue is tremendously energizing.  Listening to our partners describe the progress they have made thanks in part to miraclefeet support validates what we strive to do each day.  Hearing people praise our approach, and reach out to us for help, reinforces that the model we have come up with makes sense to an external audience.  Hearing people ask how they can get our brace for use in their clinics as soon as possible, makes the huge effort that has gone into brace development so worthwhile.  We all came back feeling even more fired up about what we do than ever.

Many thanks to all our incredible partners (over 25 of you!), who came from as far as Brazil, the Philippines and Tanzania to be in Barcelona with us.  And thank you to Ponseti International for bringing us all together for 4 days of great networking, learning and thought-provoking dialogue.  The clubfoot world is made up of some of the most dedicated, passionate and caring people I have ever had the pleasure of working with and I am enormously grateful that I have the opportunity to learn from and work with this impressive group of people.

- Chesca Colloredo Mansfeld
 

Happy World Cup! For every donation we get over $25 during the World Cup we will send you a pair of miraclefeet socks. Check out this video of Ali Krieger of the U.S. Women’s Soccer Team playing with her hometown team. They are all wearing miraclefeet socks in support of clubfoot treatment. If you like this video, please sign up for our monthly newsletter and stay in the loop: info@miraclefeet.org! https://vimeo.com/97992663

Update on miraclefeet clubfoot brace testing in South Africa.

We have been testing our new @miraclefeet brace in South Africa over the last three weeks and will continue to test there for the coming month. Six children have been wearing the brace at night and coming back to the clinic in Cape Town for regular parent interviews and check-ups. Our partner clinics there tell us that children, parents and doctors alike are pleased with the brace.

Here are some photos of two of the children testing it out:

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This is Soleiman and his father, excited about the new brace and booties.

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This is Synoya, a sweet, wise and fun boy who loves the brace. 

We will continue to report back from our testing sites and thank you to our partners @STEPS-SA for testing the brace there!

Help us celebrate fathers around the world! 

Meet Ranjeet and Pradeep, a father and son who were both born with clubfoot in India. The father, Ranjeet, lives today with untreated clubfoot but could not be happier that Pradeep is being treated at Wadia Children’s Hospital, a miraclefeet-supported clubfoot clinic. Their story perfectly tells miraclefeet’s mission and is a testimony to the incredible impact of having access to proper Ponseti treatment. 

This is a two-minute video we know you will be compelled to tell others about!

As part of our “Celebrating Parents” series, please take two minutes to watch this incredible video about Andre and his parents in Brazil. Andre’s favorite toy is a ball. See him in action after Ponseti treatment with his loving parents! 

If you want to receive more stories and videos, please sign up for our monthly newsletter at info@miraclefeet.org.

Guest Blog: an update from the road to Santiago

Moira just graduated from high school in the US and is currently walking the Camino de Santiago in France and Spain with her mom while raising money for miraclefeet!

"We started at St Jean Pied a Port in the Pyrenees in France. After a long hike up I was able to admire a fantastic view.

The last couple of days we have been walking through wine country. Lots of beautiful grape and olive groves surrounding small towns.

Last night, in the city of Los Arcos, we went to a cello concert in a 13th century church. The cellist is walking the Camino with his cello on his back and playing in churches along the way, while making a movie.

We’ve been talking to our fellow pilgrims along the way about their reasons for walking the Camino and ours, miraclefeet.

We’re already almost the end of our first leg on the Camino de Santiago! After 6 days and almost 150km we have one more day of walking before we meet up with our bikes in Logroňo. The walk so far has been amazing: beautiful countryside, interesting people and great food (but sore feet!). Every day we seem to see something and someone different.”  

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We are honored that Moira chose to walk for miraclefeet!

From Diagnosis to Treatment: A Mother’s Journey with Clubfoot

I’ll never forget that phone call.  If there’s one number you don’t want to pop up on your caller ID a few hours after you return home from a routine 20 week ultrasound, it’s the doctor’s office.  My stomach sank as I picked up the phone.  After some initial introductions, the genetic counselor on the other end said kindly but decisively: “It looks like your baby has clubfoot.  We would like you to come back tomorrow morning for another ultrasound to confirm the diagnosis.”  I, like most parents who have received and will receive similar phone calls, had never heard of clubfoot.  It sounded vaguely medieval. Certainly not something I would ever have to worry about. I was devastated and scared.

The diagnosis of bilateral clubfeet was confirmed the following day. Luckily, it appeared isolated, and while that was a relief, I still cried for much of the following days.  Finding out something is wrong with your child before he is even born is a humbling experience, and I confess that I did not take it well.  Through the tears, however, I decided to learn everything I could about clubfoot, and as I learned about the Ponseti method, my sadness was replaced with hope and then, to my great surprise, relief.  Not only is clubfoot treatable, but the treatment is non-surgical and highly successful.  This wasn’t such a big deal after all, I told myself.  A few days after the news sank in and I had done my research, I had prenatal consultations set up with the top orthopedists in the New York metropolitan area who specialized in the Ponseti method.  Even at that difficult time, my good fortune of having access to these preeminent doctors did not escape me.

 Six days after my son Leo was born, we put him in the car and brought him to the Hospital for Special Surgery, where he received his first of eight weekly casts to correct his severe case.  Following his tenotomy and last casts which were on for three weeks, he was fitted for his first brace, which he wore for 23 hours a day for three months.  He will wear the brace at night until he is 5 years old.  We continue to take Leo in for regular checkups, but those days of weekly trips to the hospital are nothing but a distant memory, indistinguishable from all of the other rituals of newborn care and clouded by the sleep-deprived haze that afflicts new mothers everywhere. 

Today, one would never know that Leo was born with this birth defect, and I feel an overwhelming amount of gratitude for the late Dr. Ponseti and for Leo’s excellent orthopedist when I look at his little feet today.  If it weren’t for them, he wouldn’t be able to kick a soccer ball or run around after his big brother, which happen to be two of his most favorite activities.  It is through this gratitude that I decided to seek out miraclefeet. 

While researching clubfoot during my pregnancy, I was astonished to learn that 1 out of every 750 children born worldwide are affected.  Of course, I live in America, where we largely have access to treatment for conditions like clubfoot.  It seems like nobody is born with clubfoot here because nearly everyone is treated for it during infancy or childhood.  Such is not the case in the developing world, where access to this relatively simple and inexpensive treatment is scarce.  This reality seems particularly unjust.  After all, unlike so many of the world’s problems, this one is entirely fixable.

The eradication of clubfoot through access to treatment is miraclefeet’s mission, and I knew I wanted to play a small part in helping miraclefeet by donating Leo’s first set of brace shoes after he outgrew them. When I learned a bit more about the organization, I inquired about becoming involved in their junior board, which is comprised of volunteers.  I had the good fortune of inquiring at a time when miraclefeet was looking to organize a fundraising and awareness-raising event in New York, and I was thrilled to help put together a wonderful event that took place just last month.  I hope I’ll be able to help out again in the future and in the meantime, I will continue to donate Leo’s shoes as he outgrows them.

On this Mother’s Day and as a mother of a child born with clubfoot, I would like to dedicate this post to the mothers (as well as the fathers) of all the children who are treated at miraclefeet-supported clinics across the world.  Even with miraclefeet’s wonderful work partnering with local clubfoot clinics to provide access to treatment, I know that many of the families at these clinics do not have the luxury of simply strapping their children into a car seat and driving 20 minutes to get treatment, as I did when Leo was a baby.  Many of them make sacrifices and endure hardships of their own to ensure their children can be treated, sometimes even moving their families and uprooting their lives, just so they can be closer to the clinics.  Thank you to miraclefeet for working with local healthcare providers to increase access to clubfoot treatment for these families. And thank you to the parents who faithfully bring their children to these clinics weekly for castings and then regularly for brace check-ups.  Together, miraclefeet’s mission comes closer to being realized.  And as you, the parents, know, your children will be eternally grateful for everything you have done for them.  Happy Mother’s Day to you!

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Jennifer Krakowsky is a full-time mom and part-time attorney who enjoys photography and practicing yoga whenever she can. Prior to having children, she practiced law full-time as a litigator in New York. She is a dedicated and passionate volunteer at miraclefeet. She and her husband Josh have two boys - a 4-year-old and a 19-month-old. They reside in Westchester, NY. Jen can be reached at jenkrakowsky at gmail.com.