Kai's Story
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The History


Kai (pronounced Ky) was diagnosed at birth with right clubfoot.  I had something like 11-13 ultrasounds due to a high-risk pregnancy, but none caught the clubfoot.  We were not shocked or upset because our next child up was born with positional clubfoot (no need to treat) and moderate metatarsus adductus.  It just seemed normal to us to have a child with a crooked foot! 

The local ortho who confirmed the diagnosis told us to get ahold of Children's Hospital in Seattle and get him in there for treatment no later than 3 weeks.  I did just that and Kai's first appointment with Dr Mosca was on January 17 - a full week before his due date!  In the time between a member of my Expecting Club contacted me with information about the Ponseti Method.  It just so happened that Dr Mosca was a well respected Ponseti doctor.  We were very happy about this and never thought Kai would face surgery.

 Kai had severe clubfoot - a 5.5 of 6 on the Pirani Scale - but his foot was corrected to the point of being ready for tenotomy in three casts, which is actually less than the bare minimum recognized!  He had the tenotomy and we were very eager to see the perfect little foot when that cast came off. That is when the trouble began ...

When the cast came off, his foot did NOT look perfect. Dr Mosca said he had great flexibility and just seemed to have a "fat" foot.  A month later I took him to see Dr Mosca again because it looked like his foot was drawing up in an inverted V.  Dr Mosca again said it had excellent flexibility and it was just fat. I tried to send pictures to Dr Ponseti, but the quality of them was too bad for Dr Ponseti to tell anything.

In June Dr Mosca released Kai from 23/7 brace wear. Again we brought up the strange look of the foot and again were told that flexibility was great. I tried again to contact Dr Ponseti about it, but without photos he could only say that Dr Mosca was an excellent, highly qualified doctor.

Finally in July I got a digital camera for my birthday.  I sent Dr Ponseti photos in August and he then told me that Kai's foot was an unusual foot and that it was definitely not corrected.  We were devestated!  We spent a few days talking to both doctors, both by e-mail and phone.  When I began to discuss it with my husband - how Dr Mosca was closer, but didn't seem familiar with the problem, but could be coached by Dr Ponseti, so on, my husband looked at me and said "Why don't you have plane tickets yet?  As far as I am concerned you are going to Iowa and that is it."  Within three weeks Kai and I were in Iowa.

Dr Ponseti then told me that Kai had plantaris - an unusual form of clubfoot that involves the midfoot in an abnormal way. He put two casts on Kai and sent us home with new angles on our brace. If we had stayed another week, we would have been able to get the then-new Mitchell Brace.
Bad Shoes

The last cast that Dr Ponseti put on came off in mid October.  By early November Kai's foot was relapsing.  In January this was confirmed by Dr Ponseti. In February Dr Mosca began casting again.  Kai's hindfoot was still fully corrected so Dr Mosca used short leg casts at two week intervals.  It seemed to work well and after the first cast came off we could definitely see an improvement.

Then calamity struck.  We took off the second cast the night before the appointment and put the FAB on for the night.  When we took the shoes off the next morning all correction from that cast had been lost!  We had known all along that the Markell shoes were not working well for Kai, but we never imagined this sort of impact from 12 hours of wear. 

Within 24 hours it was determined that Kai would not return to the Markell shoes after casting and that John Mitchell would make shoes for Kai and that Kai would remain in casts until those shoes came.  That is when it seemed like the journey would last forever!  John did not have forms for a foot as big as Kai's since everyone had thought that plantaris would stabilize around one year old.  John had to send me a shoe so that we could determine how much bigger he would need to make it to fit Kai's foot.  He estimated it could take a month to make the shoes.

A month later, Kai had the 4th cast removed and went into the Mitchell Brace nights and naps.

One In A Million

Most cases of complex clubfeet stabilize sometime between 12 and 24 months.  All, of them, in fact, except two.  Guess what?  It is lonely at the top.  Yeah, we have a one-in-a-million kind of guy.  Kai turned three in December 2005.  To date, his foot has had a relapse of cavus every six months or less since we left Iowa.  He has had 6 sets of casts with a total of around 16 casts.  The Mitchell shoes helped some, but we have gone back to the Markells for the time being and at this point they are working as well as anything or nothing.

Dr. Ponseti gave me the unfortunate news that no one has the answer for this.  We have determined that the ATTT will not help because that complex of tendons is not the problem.  There may be a possibility of a plantar facia release working, but Dr. Mosca is not ready just yet to do anything beyond casting.

Dr Pirani has expressed interest in seeing Kai, and we probably will take Kai to him if there is another relapse, just for a fresh perspective.  At this point it couldn't hurt.  In the mean time, I am still trying to gather information and help look for viable solutions.  We know that someday this will all be behind us ... we just don't know when that day is yet. =)

~~~~~~~~~

In May 2008, Dr. Mosca performed a plantar fascia release and long toe extensor release on Kai's foot to relieve the persistent cavus that was causing Kai's heel to not even meet the ground when walking. The surgery was a raving success and no further intervention (casting, bracing or surgery) has been necessary in the 3.5 years since that time.

As of October 2011, Dr. Mosca in Seattle and Dr. Morcuende in Iowa City concur that Kai's foot is well corrected and functionally sound. He has no pain at all, and any differences between his two feet are superficial only. There really is a light at the end of the tunnel!

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We moved to Iowa for other reasons in July of 2011. In May 2013, Dr. Morcuende was forced to repeat the plantar fascia release and did opening and closing osteotomies on Kai's midfoot to correct a bone deformity that was causing metatarsus adductus. He believed an ATTT would be necessary but I believed it would not be, so we came to an agreement where he would do the fascia release FIRST and if he still felt the ATTT was needed, he could do so. Well, as it seems has always been true, I was right. Dr. Morcuende was amazed at how successful the fascia release was. After 8 weeks of long-leg casting and 3 months of physical therapy for muscle atrophy and gait training, Kai's foot was just as perfect as it had been in 2008. 

But, this is Kai. One in a million. Dr. Morcuende wouldn't put him in the follow up study for the original Ponseti complex group because he is the only one whose foot keeps "going back." He has said if he ever sees another foot like it, he will name the subgroup, "Kai foot." And that brings us to the last appointment Dr. Morcuende accepted scheduling for in 2016. He stated that the best he could offer was continued PT exercises and reconstruction if there was any further loss of flexibility after age 16 - recognizing it was already happening. He declined further check ups as not useful. Kai's foot simply doesn't make it through growth spurts without back-sliding. I suspect a trip to Seattle lie in the near future.