Quick Overview of Clubfoot and the Ponseti Method

When I mention that we have a son who was born with clubfoot, or when I say that we are expecting another baby with the same condition, many people ask what exactly it is.  I wanted to do a quick post here to give some basic information about what clubfoot is, the treatment for it, and a bit about our family history with it.  Forgive me for not being too specific or scholarly with this...my history major background is cringing at the lack of citations and proof reading. :)  One thing I have learned is there is a lot of variation with how things can happen with clubfoot.  Each case is unique.

Most of my information has come from Ponseti International website.  You can visit it here:  http://www.ponseti.info

Clubfoot is a treatable birth defect that occurs in approximately 1 in every 1,000 live births.  About half of all of those affected with clubfoot have it in both feet, known as bilateral clubfoot.  It occurs in males twice as frequently as females.  I find this especially interesting since Oliver had bilateral clubfoot, Lucy wasn't affected, and now we have another son on the way who is expected to have a right clubfoot.

Physicians have observed that fetuses that develop clubfoot start with a normal foot and then the foot begins to turn inward around the third month. Most children born with clubfoot are not missing any bones, muscles, or connective tissue. It is a congenital condition, meaning that when it occurs it is always present at birth. (http://www.ponseti.info/clubfoot-and-the-ponseti-method/what-is-clubfoot/learn-about-clubfoot.html)

It is not known exactly what causes clubfoot.  While it is not always genetic, there is a family history in some cases. My husband, Jay, was born with clubfoot.  He had casts and an extensive surgery on one foot. 

Thankfully, the surgery that Jay had as a baby is no longer the norm for treatment of clubfoot.  Jay has a lot of pain in that foot, especially if he is on his feet for a long period of time.  The "gold standard" for treating clubfoot now is called the Ponseti method. 

The Ponseti method is mainly non-surgical.  It is recommended that it begins within the first week or two after birth to take advantage of the baby's flexibility.  The baby's foot is turned into a specific position and casted.  The casts are then changed every 5-7 days.  Most clubfeet can be corrected with 5-7 castings (sometimes less, sometimes more). At the end of the castings, a minor surgery is usually needed to lengthen the baby's tendon(s).  This is called a tenotomy and the baby will be casted again afterwards. This cast is left on for a longer period of time (usually 3 weeks, although this can vary).  Some doctors do this surgery in office with a local anesthetic; others prefer to do it in an operating room under general anesthesia. 

After the last casts come off, the baby wears a brace.  Called "bar and boots", this is a brace that keeps the baby's feet in place.  A pair of "shoes" (special orthodic shoes called AFOs) is placed at a specific degree keeping the baby's feet turned outwards and set onto a bar.  There are different types of bar and boots braces.  Some are a fixed bar, in which the baby must move their feet simultaneously.  Others are a hinged bar (called a Dobbs bar, developed by Dr. Matthew Dobbs, one of the nation's leading experts in clubfoot) and allows the baby to move their feet separately.  It is recommended that the child wear the brace for 23 hours a day for the first 3 months and then slowly work down to wearing the brace just while they are sleeping.  Children usually wear the brace during the night for up to 4 years (sometimes more) to prevent relapse.  This website shows the Dobbs bar and some adorable children wearing them! http://www.dobbsbrace.com/
 
Oliver's treatment seemed to follow the Ponseti method except for the bracing.  He was also one of the few who did not need the tendon surgery.  Oliver wore KAFO braces and was done just after his first birthday.  As I read about stories of relapse, I am amazed at how God took care of our little guy.  I'm not sure why our orthopedic doctor at the time varied from the Ponseti method when it came to Oliver's bracing treatment.  I'm just thankful it all worked out.

While it is said that the Ponseti method is not exactly difficult to learn, it is very precise.  We live just outside of a major city in Indiana that has a large orthopedic practice.  However, there are no orthopedic doctors sub-specialized in pediatrics within this group, so none of them know how to treat clubfoot.  Each cast has to be set a specific degree and variation.  The doctor that we saw with Oliver is no longer practicing due to health issues, so we are in the process of looking at our options.  In about a week and a half I have a consultation with a doctor about two hours away.  I have also been in touch with Dr. Dobbs who is located in St. Louis.  After my consultation with the doctor who is located in our state, Jay and I will discuss what option would be best for our family.

It never ceased to amaze me how happy this little guy was. He has brought us so much joy!