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:
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
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:
This is Soleiman and his father, excited about the new brace and booties.
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!
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.”
We are honored that Moira chose to walk for miraclefeet!
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!
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.
miraclefeet has created a testing protocol for our new brace, which will help us gather feedback from doctors and parents about its efficacy, ease of use, comfort and parental compliance over a two-month period that started last week. This beta testing period in Nicaragua will enable doctors and clinic coordinators to assess the brace four times over the next two months - once at the first visit and then after one week, three weeks and two months.
This beta test allows us to gather data about the testing protocol itself so that we will be able streamline and standardize the process in each of the other test countries (which are the US, Brazil, India and South Africa).
In our first week of testing in Nicaragua, the most common anecdotal feedback we got from moms was that the brace is easier and faster to put on because the shoes can be put on separately from the bar and because the shoe is a traditional-style shoe. They also said that their children liked it more and they were pleased that their children could stand in it.