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Noah's story
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We were referred for adoption a 19 month old boy with untreated bilateral clubfoot in December, 2006.  No problem, I told my husband.  A simple surgery or two, and it will all be behind us.  He was on the special needs adoption bandwagon, but barely.  He was not very hip to the idea of complicating our lives any more than necessary.  We already had 3 young bio daughters that kept us busy enough. We sent in our Letter of Intent to China and began waiting for the approval to travel to get our son. 

In that 3 month wait, I began to research doctors and found a bombshell on the internet.  There was a whole different, non-surgical method of correcting clubfoot.  It’s named the Ponseti method, after Dr. Ignacio Ponseti who pioneered the treatment, and who is unbelievably still practicing at the age of 93 in Iowa.  Why was this not something everyone knew?  I’m a physician, and I didn’t remember THAT from medical school.  Surely it was quackery.  Only the more research I did, the more I realized this was a very viable, valuable method of clubfoot correction.  Not only was the child not subjected to surgery, but it worked on the premise of coaxing the bones in the foot to remodel naturally.  Children treated with the Ponseti method have much less pain during treatment and a much lower rate of arthritis of the feet and ankles later in life. 

Unbelievably, there were no doctors within a 150 mile radius of us that are actually certified by Dr. Ponseti.  Several doctors in the vicinity practice it, but I found many parents who were dissatisfied with their outcomes.  (Got to love the internet!)  The treatment really requires that the method be followed to a “T”, and that the doctor truly understand the bones in the foot.   On top of this our son would be almost 2 years old by the time we started treatment.  That’s geezer status by Ponseti method standards, as most babies are casted within a few weeks of birth here in the United States.  We wanted a doctor that was fabulous, and that had an ongoing relationship with Dr. Ponseti, to take advantage of his expertise.  On many recommendations from “been there, done that” parents, we decided on Dr. Stephen Lund, in Dallas, Texas.  Our drive would be 4 hours each way.  (One of our initial criteria was a SN that would only need local specialists…funny how things work out like that, isn’t it?)   My husband was still dubious.   In his mind, surgery was surely good enough and certainly more convenient.

The standard Ponseti method is 3-9 plaster casts, each one on for 5-7 days.  This is followed by a tenotomy (small and done under a local anesthetic in the office) where the Achilles tendon is severed.  A three week plaster cast is placed to stretch the tendon.  After this, the child graduates to a brace which holds both feet rotated outwards and is used to maintain the correction gained thru casting.  The bracing time is 23 hours a day initially, gradually weaned down over many months to bed and nap time only.  The brace is worn until the child is 4 or 5.

Because our son was older, and because he also has arthrogryposis (discovered after we returned home with him) his treatment differed somewhat.  His arthrogryposis caused his feet and ankles to be incredibly stiff. This was worsened by the fact that he was walking and running on his feet.  This was forcing the clubfoot into an even more severe “locked in” position. The only joints that moved were his toes.  Having nothing to compare to, I thought this was normal for clubfoot.  Dr. Lund, however, stated Noah was the most severe case he had ever seen and did not think casting would work.  He was encouraged to try casting by Dr. Ponseti, if only to loosen the foot for later surgery.

Noah had 10 casts (each with a fiberglass shell over the plaster to help them hold up to a very active 2 year old), a tenotomy, then the three week casts, plus two “touch up” casts after that.  The casts didn’t seem to bother him, and by the end he was walking, running, and even dancing in them in a very stiff legged, Tin Man sort of way.  Dr. Lund was wonderful, caring, and tremendous with Noah.  He is also truly gifted in treating clubfoot.  (I’m not sure there are enough superlatives to accurately describe how happy we are with him.) When Noah’s casts finally came off his feet looked wonderful, though still stiff, and we had completely blown our mini-van lease mileage out of the water, having made fifteen 9 hour round trip drives in a 12 week period.   Noah then spent 3 months wearing the brace 23 hours a day, and getting around just fine, including climbing up and sliding down our “Little Tykes” style play set.

At our 3 month check up Dr. Lund asked us to see Dr. Ponseti in Iowa due to the significant residual stiffness in Noah’s ankles.  The next week we were sitting in Dr. Ponseti’s office, where the official verdict was “He has stiff feet due to the arthrogryposis.  We’ll never change that.  He needs to be walking as much as possible.”   Dr. Ponseti recently modified his protocol for older kids, allowing them out of the brace much earlier and deciding that the use of the muscles and bones did more to maintain correction that keeping them braced.  He also told me that just 2 years ago he would have simply recommended surgery, not thinking casting alone could possibly work on an older child.  It has been cases like Noah that have made him change his mind. 

Just like that we went to night and naptime bracing only, and Noah literally took off.  He was so thrilled, and we were so unprepared , that he insisted on walking, barefoot, the length of the University of Iowa clinic complex…in December, with a huge grin on his face.  And my husband, a doubting Thomas initially, is now a huge fan of Dr. Ponseti , Dr. Lund, and their work.  Bringing Noah home, then bringing him to these doctors, were two of the best decisions we’ve ever made.

Click here to see Noah's before and after photos.