My name is Alexandra and I am Greek. I have a son, Apollonas who was born with his right foot clubbed (equinovarus) and his left foot had the mildest type of talipes, metatarsus varus. We found out about this condition when I was 21 weeks pregnant in the usual ultrasound. I was shocked and sad and I started seeking for information right away through the internet. My husband wasn’t aware at the moment what clubfeet means, but I knew a lot more because one of my first cousins was born with bilateral clubfeet.
My research brought me to the ponseti method and it seemed very optimistic, although the casts up to the groin looked a bit uncomfortable and scary. I wish I was then more aware of what I am aware now.
After our son was born we started visiting doctors. I had a list of doctors that I found through forums, and all of them were tried by a parent and proved efficient. After a few visits and some calls that came with no answer we started casting with a doctor that seemed quite experienced. When I asked him about the ponseti method he didn’t give me a clear answer, just that what he is doing is casting and surgery could be an option that hopefully we could avoid. As it turned out, he was not trained with the ponseti method.
It was difficult with the casts. Our sweet baby was screaming and kicking when they tried to apply the cast, and twice his leg was bruised so bad after the removal of the cast that he had to stay with no cast for ten days in a row. I can’t begin to describe the emotions… I just wanted this whole thing to come to an end.
Finally he had a surgery when he was 2 and a half months. It wasn’t tenotomy. It was a bigger surgery to lengthen the achilles tendon and the whole procedure took maybe half an hour to 45 minutes. Then he had two casts for 15 days each.
After the removal the foot was corrected. We were so happy! BUT…. the doctor didn’t put braces, just these little shoes called bebax, and those not even right away, but after a week. After a while we decided that we should see someone else, especially after the reading I did about the importance of the splints. We managed to find two of the doctors we were trying to reach in the beginning. The last doctor that saw him, who is trained with the ponseti method said that the foot is flexible and that he must wear the braces every night. No exceptions.
Our boy started walking when he was one year old. Now at 20 months old he runs, plays with his ball, and climbs everywhere. No one can detect a problem unless they know his history. I hope that we won’t have to enter a surgery room ever again!
Good luck to all and keep your spirit high!
Alexandra
Hi alexandra,
Me and my wife just saw your post and we are wondering if we could contact you for some info. We have a daughter with bilateral clubfoot, we are now in the casting stage and we are quite confused with the different doctors’ tretaments we have been advised in the last few weeks, especially concerning the shoes (mitchell or bebax)
We live in Thessaloniki, Greece.
Thanks!
Dear Yannis. I just saw your message. Sorry I didn’t reply sooner. I would definitely choose ponseti braces than bebax. There a many many reasons for this. Please feel free to contact me @ 6938690884.
Best regards
Alexandra
Maybe i can help you too
I have an eleven years old son who will undergo a surgery on his club feet. This surgery surgery involves the use of ilizarov frames at the london royal hospital under the care of doctor Barry Matthew.
I am worried about this operation as I heard the recovery may take up to six months and my son might need extra surgery if it does not work.
Do you know of any kids who had this kind of treatment at the londondon royal hospital or elsewhere? I would really want to hear from you.
Hi my name is Michael Bryant and I recently stumbled upon your response and this is the first time I’ve seen this website. Anyways I was born with a severe club foot on my left foot and I’m actually doing great. I am turning 23 this month and I can run, jump, and well anything. in fact, im an actor who recently graduated from the university of wisconsin- madison. The only wierd thing is I have two different size feet but it makes me unique. So don’t worry, keep your head high, and enjoy the years of childhood with your son ; )
Hi Michael, it’s surely nice to hear that you are doing great and that you don’t have any problems with your feet at your age. I am also pregnant with a baby boy with bilateral clubfeet and I am wondering, what kind of treatment did you followed? Was is Ponsetti?
My mother said I had my heel cord released and some kind of surgery after that. Then, I had to wear a cast for two years after I was born.
Hi Michael, I have an 11 week old with unilateral club foot. We are now in the phase of wearing brace for the next three months. I am curious if he will have the same shoe size problem like you. How do you shop for shoes?
Michelle
hey I have had to buy two pairs my whole life, but I actually started ordering shoes from nordstrom.com and putting the ones I don’t need in a box and then sending them in for a full refund. Always check with managers at shoe stores sometimes they will be able to help you out with a discount. And if you have any other questions I would be happy to answer them.
Hello Alexandra,
My name is Szilvia and I am trying to help my best friend who’s expecting a baby with club feet. She lives in Hungary where Ponseti trained doctors are very hard to find. I’d like to ask you a few questions if it’s ok. I tried e-mailing you from here but it did not work.
Hello Szilvia
I have forwarded your message to Alexandra.
Please have your friend look at this list of Ponseti Doctors.
If the doctor treating her child is not on this list please look over this checklist to make sure the treatment is following the correct Ponseti method.
~ Ruth
Thank you! She is considering taking her baby to Austria, which would be very expensive. Some doctors in Hungary also treat clubfoot, even claim to be Ponseti trained, but it’s hard to trust them.
Thank you again!
Szilvia
Dear Szilvia!
I will be very happy to help in any way I can!
Please feel free to contact me!
My best wishes for the baby!
Best regards
Alexandra
Hello Szilvia,
I saw the post about your friend’s baby. We are from Romania and we are also expecting a baby boy that probably will have bilateral clubfeet. The doctor detected it on my 22 weeks ultrasound. Now I am 38 weeks and the baby will come soon. We also had this problem, that in Romania there are only just a few doctors trained with the Ponseti method so, we found a great doctor in Austria, in Wien. His name is Dr. Radler and he is focused on treating clubfoot babies. Costs are not that high for a new pair of feet :). After birth we will go to Austria for treatment and we are very confident, because the doctor had great results with other babies so far and, assured us that 95% our baby will recover, if we respect all the steps of the Ponseti method.
I was wondering if your friend went to Austria and how it goes the treatment for her baby?
Regards,
Cella