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Hi. Our son was born with extremely bad club feet- as in twisted around nearly backwards.

The protocol we chose was to have him casted every week to stretch out the feet- especially the inside part. Wish I could draw that for you....

His first reconstructive surgery was at 11 and 12 mths of age. By then the feet had been casted for long enough and could lay fairly flat and straight. He also wore splints for part of that time so they weren't always in casts. Makes it easier for bathing etc....

He wears braces even today at age 14 to help hold the correction. He also had a slight revision done at 4 yrs. of age. We expect one of the feet needing to be done again when his growing is complete.

 

Most cases are not as severe and acute as his were- some can be merely corrected by special shoes or wearing a bar at night to hold the shoes in a certain position....There are different degrees of how 'clubbed' they can be. My advice is to talk to more than one pediatric orthopedic surgeon. Don't let anybody touch him unless this is something they do a LOT. Our doc is at National Children's Hospital in DC and people bring their children to her from Europe and Africa as well as the East coast. She's reknowned in her field and I just love her. We saw a doc early on that wanted to cut/do surgery immediately. She had already explained the pitfalls of that. (We met and talked with her -brought her ultrasound photos- while I was still pg) Get LOTS of advice. We have a friend at church who is a physical therapist and he put me in touch with great folks. They are my go-to people when I have questions. I hope you can collect the info and advice you need. Be careful about going online- some folks' stories and pictures are heartbreaking and would freak me out. My dh banned me from snooping around that way because of the effect it had on me.

Walking/running/swimming etc....are all possible and with early intervention your baby will probably do well. Lean on the Lord and not your own understanding - Proverbs 3:5. Let me know how I can pray for you. :)

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Google - Ponseti Method - loads of information.

 

It depends on the severity of the club feet as to the duration of treatment.

 

My friend adopted a little girl from China who had the most severe club feet I have ever seen. She was fortunate to be in a foster home that allowed her to get to a hospital that did the Ponseti Method. Today, at three, she is an active, running, very healthy, little girl. Just has to wear her brace at night.

 

:grouphug: and the best of luck.

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Hi~

It really depends on the severity, you may not know until you take the baby to a specialist after it is born. We had casting, special shoes with the bar, and exercises and now all is well. Not perfect, there can be shoe issues, but we are buying regular shoes. He is now 9 and is fine. Just try to have peace while you are waiting.

Btw I had club feet as well. I had casts and braces as too and I am fine as well.

Sheri

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My DS was born with severe bilateral clubfoot. I think knowing ahead of time is partly good and partly bad. Try and get your concerns and thoughts heard and dealt with (like you're doing here!) now and then on birth day, try not to make it the one thing you're looking at/thinking of. Just put it aside because you'll only have a short couple of days to enjoy your soft baby before it's time to jump into treatment options.

 

We did not know ahead of time with DS and it was crushing at first. I was 19, idealistic and overwhelmed.

 

Typically, an orthpaedist will want to put plaster casts on to reshape the feet within 72 hours of birth. No one wanted to be the one to "diagnose" DS so he was 11 days old and I'd never heard of clubfoot so I thought it would straighten out on its own.

 

The hardest part was the treatment process. In my case I had a wonderful medical assistant who sang and talked to DS every time, but the doctor came across as cold til I got to know him and laying my naked baby on a cold vinyl medical table to have his feet twisted around was overwhelming at first. I used to bring a pillow every week and lay him on it. (I was the only parent to ever pull that one, lol. There were only 2 times it interfered with casting because the hips have to be very even while they are shaping the legs and feet into the casts so we just set it aside on those occasions but he stayed warmer and happier when I brought it.)

 

He was casted weekly because of how fast infants grow. The first few sets were upsetting to DS because he was an infant and didn't like the cold, etc... the later ones were incredibly much more difficult because his feet were very sore and sensitive from being stretched and also because they were never touched by anyone other than when he was casted, so subsequent casts truly seemed to hurt him. (He would flinch if his feet were even brushed up against and scream if they were handled.)

 

There's no mistaking it was difficult and upsetting, but I promise you, now that it's over, I know it was well worth it and all I feel is incredibly gratitude to live in a country/situation where he could be carefully treated and go on with no problems. After DS had been treated I met a man born in the 30's with untreated clubfoot. He has been partially crippled, and someone people stared at and made fun of his whole life and it just put the pain and frustration of treatment into perspective for me.

 

People can be unkind. A lot of strangers asked how he broke both legs already or what was wrong with him and many friends and even relatives were too afraid to hold him (thinking he was too fragile) which hurt my feelings a little. A lot of people stared when we were in public. I didn't mind the children that did. I know they were just thinking "Poor baby! What's the matter with him?" but pointing adults got on my nerves for sure.

 

My best advice is first to speak up. Ask a million questions and ask them a million times if you have to. Don't just go in and let your doctor do whatever and then go home and toss and turn worrying or not feeling like you're a part of the plan. If they don't explain every detail to you, make them. When the doctor says this will help or that will help, ask WHY and HOW. They should look at x-rays in front of you. If they don't, ask them to show them to you and explain them to you.

 

If you're uncomfortable with how your baby is shielded during the x-ray process, speak up.

 

Secondly, be friendly with the staff from the receptionist, to the interns and assistants, to the doctor or surgeon. This promotes communication and makes the process much more bearable. If you have to see these people that many times, it's better if you (and they, lol) are not full of dread every time.

 

Also, silly, but I would nurse DS immediately before appointments (often in the exam room while waiting) because as a newborn, it exhausted him so much that he would sleep for hours afterwards).

 

(I'll continue below.)

Edited by Stacie Leigh
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My now 8 year old was also born with severe bilateral club feet. It was not caught in the ultrasound, so I didn't know until she was born. She was put in her first pair of casts when she was 3 days old. (the morning after we left the hospital. Our pediatrician made arrangements with the pediatric orthopedic surgeon to be seen before office hours because it was flu season. We had to go in weekly for cast changes for quite a while because at that age they are growing so rapidly the casts can get to small really quickly. At 8 weeks old they had to do a very minor surgery to get clip her heel cords to allow them to turn her feet more for castings. She had a major reconstructive surgery at 16 months. She wore casts for most of the first two years of her life. After that it was corrective shoes and a bar at night. She has done very well and we will go in for a check up every two years as long as she is growing. We went in last August for her two year check up and found out her ankle bones had started to not grow properly so they had to go in and put a large screw through the growth plate in each ankle to even out the growth. She will have surgery again before the end of the year to have them removed.

 

I will say it is very important to find a doctor you trust and that has a ton of experience with club feet. I have yet to meet any child that had club feet in Oklahoma that didn't use the same dr we use. We were at their office so often when Kelsey was little that they became like a 2nd family to us. They were very supportive and understanding, loving and caring and that helped a lot to get me through. I can't say enough about my trust for this man and his staff. I had to trust him completely that he would do the right thing at the right time, and he has never let me down, and he has always been honest with me about what lies ahead. We know there will be more surgery in her future, because of problems with the way she has grown, but that is not the norm.

 

That was the medical side, now here is the mom/emotional side. I'm going to be honest and tell you it is a long and stressful road. It hurts when they turn their feet to cast them, and it is hard to watch your baby hurt. I just had to tell myself that it was necessary and remind myself to be strong for her. You will get A LOT of questions when you are out in public with a baby that has casts on both legs. I even got some crappy comments and looks. The people that asked nicely why she had casts didn't bother me and I was more than happy to share with them but the people that would say "what's wrong with your baby" would infuriate me. They were always told there is NOTHING WRONG with my baby. You have to adjust clothing, which can be frustrating and bathing was another challenge. We had to lay her on a thick towel on the counter and give her a sponge bath as not to get the casts wet. This was much easier when she was tiny and didn't move around a lot. The casts never really seemed to bother her, I think because she didn't know any different and had always had them. One thing I did that I'm so very glad I did now, is I took pictures at ever doctors appointment and surgery. All of her "club feet" pictures are in a separate album. She loves to look through them and loves to show them off. Her feet will never look perfectly normal, but it is rare that anyone notices that they are different.

 

I always wished I knew someone who had been through it to ask questions and get information, but I didn't know anyone, so if you ever have questions or need to talk I will be more than happy. Here is a website that a family member printed for me the day after she was born that gave me a lot of hope. http://www.clubfeet.net/celebs.php It shows celebrities and athletes that were born with club feet. If you do a search Kristi Yamaguchi's story is online and there are even pictures.

 

Sorry this got so long! I wish you and your baby the best!

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Bath time was a big challenge at first, but we found that if we put 4 inches or so of water into a baby bath tub then laid DS flat on his back on top of a thick baby bath sponge with his bum against the edge of the tub so that his casted feet/legs were straight in the air, we could get him clean without wrapping his legs in plastic or hanging him over the edge of the tub and dumping cups of water, etc...

 

DS was treated with the modified Ponseti method. His orthopaedist is a surgeon and wanted to cut both of his heel cords but DH and I wanted to wait. With casting alone (He was casted for about 3 months on a weekly basis and we switched to fiberglass after 6 weeks or so.) he reached 95-99% correction in one foot and 99% correction in the other which is pretty ideal.

 

We did some braces and exercises and he's now around 99% in both feet without the heel cord surgery. We still see our Dr. every couple of years for a checkup and he likes to record video and progress of his patients which is cool. Our Dr. now really affirms our decision not to have heel cord surgery which gives 100% correction at the time of surgery but typically decreases to 97-99% once the scar tissue heals. I do not think that is the best course for everyone, but we felt it was right for DS and we and his doctors are very happy with the outcome.

 

DS is 8 and there have been no complications at this point except for the fact that he has "ugly" feet. (The casting process creates wrinkly extra skin on the side that was already stretched out. At 8, he is just now outgrowing the wrinkles that were around the outside of his ankles.) He also has "hooked" pinky toes that kind of lay on their sides and curl in. This can be a sign of recurrence but in his case, it's now been that way for 6+ years and multiple x-rays show that it's simply a permanent side affect of his condition and treatment and not recurrence.

 

His feet are shorter, wider, thicker and less flexible than my other children who all have unusually long feet, lol. So actually DS is the only one who has "average" length feet. (Re: the flexibility- His feet are not hard and unable to flex and move, but the rest of can thank our genetics for very webby, flat feet that are almost "flimsy". DS's are much harder and thicker, but he seems to have great flexibility when running and playing and he is a FAST runner. He wants to play soccer and I've had track mentioned to me by others more than once too which always makes me smile considering how we started out!)

 

He was able to wear most toddler shoes comfortably and I focused on flexible, comfortable soles. Once he was out of toddler sizes, shoe shopping became much more difficult as boys shoes tend to be very narrow and stiff. One example is Chuck Taylors. He wore them with everything when he was a toddler and the soles are very flexible. You can bend them right in half. Once the sizing switches over to Boys (size 11) the shoes change form and are very narrow, heavier and have inflexible soles so he hasn't been able to wear them since he was 4 or 5.

 

In the summer he wears a lot of flip flips around the house because most sandals are uncomfortable for him but we've found that Keens work decently well (a little on the narrow side) since they are adjustable. He typically does need a Wide or Extra Wide in athletic shoes, which he wears all winter and dress shoes are a challenge. The boys wanted to wear really cute boat shoe loafers at Easter and DS's actually came unstitched because his feet were just to wide and chunky. (When I say that people picture chubby feet, but there's no chub in his case... just hard, wide feet.)

 

These days, it's really not a bad prognosis at all! Don't let fear and stress eat you. Apart from the medical side of things, get some friends to take you out to eat and try and find some reasons to laugh during the weeks that don't go perfectly.

 

Many, many, many hugs to you and please PM or email whenever you wish... truly!

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Thank you so much to all of you who have responded so far. I have a couple more questions I just thought of...

 

- How did you prepare older children, if you had older kids?

 

- During the newborn casting stage, will I be able to "wear" my baby in a wrap style or other carrier? I LOVED doing this with my others...

 

I did not have older children, but after my experience, I would speak frankly and without an overflow of emotion to my other children. I would explain that the baby was going to have special feet that needed special care from a special doctor and that it will take some time and be hard for mommy and the baby sometimes, but that it will be ok! (Just to be clear, I think crying is perfectly ok for momma! I just wouldn't do it in front of young children because I don't think they can necessarily interpret that without becoming fearful.)

 

After you get a plan of treatment, continue to update them explaining about casts, what they will do to help the baby and how we can best hold/touch baby.

 

 

-Yes, you should be able to "wear" the baby, but it will be trial and error. Casts are cumbersome and can cut into you and put pressure on the baby's thighs. I would think that a "sitting" position for the baby with the legs even would work best.

 

You'll have to keep an eye on circulation since the baby won't be able to bend his/her knees and adjust his/her legs and feet to keep blood flowing so when in a wrap, you'll have to take that into consideration. That said, you'll have to watch carefully for dusky toes regardless. Infants can grow so quickly that the casts can become tight on them. We did have to take DS in for emergency cast removal on one occasion. There was no major crisis, but I noticed his toes were consistently a little chilly so took him in and they saw the casts were a little tight and recasted. No big deal.

 

I would ask your doctor about it but realize that it may not be something he or she has considered. If they have specific thoughts you can apply, great. If they can only speculate then again, trial and error. I think your baby will enjoy being close to you and find it very comforting! :)

Edited by Stacie Leigh
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Well, it depends on how severe the problems are at birth. If the bones of the feet/ankles are displaced and they can't get them back into position through casting, etc., then obviously more serious surgery will be required over time in order to get the best results. If the feet are not so severely malformed, such that only tendons and muscles are involved, then less severe procedures will be required. Every case is going to be a little different.

 

My son was not that severe. He was casted on both legs for about 9 months. I had to soak him in a weak vinegar bath for hours every week to get the casts off for recasting (they didn't want to use the saws on a baby and scare him). He then had the bar device that attaches between little leather boots and that was worn for about another 8 months or so (maybe more; I can't remember now). So there can be some pretty intensive doctor visits during the first couple of years, I guess, even if the feet are not that severe....

 

At about 21 months, a heel release was done by Shriner's hospital here. After that time, he began to be able to walk and in doing that, he stretched out his other heel enough that they didn't feel they had to operate on it. He is still followed by Shriner's.

 

Something that the doctors there never made clear to me is that with this condition goes a decrease in muscle mass of the calves. Evidently, there just isn't as much muscle there as in a typical person and no amount of exercise will ever result in more muscle mass because the material is just not there. So the calves will never have the strength of a typical person. Also, I am told that use of a cane may begin to be required when the individual is in their 50's due to weakness of the legs/foot and ankle pain, etc.

 

My son has what is termed by doctors here a "good result." That said, he does have some limitations. He has always loved playing soccer, but has lost some degree of mobility in his ankles as he's grown. When you look at him at a distance, it looks sort of like he's walking on the inside of his ankle areas. If he tries to roller or ice skate, it looks like his feet are completely laid over to the inside (I can't figure out how he does it - it looks painful to me)....

 

He has had to stop playing select soccer because he just doesn't have the foot work skills (not enough dexterity) for that level of the sport any more. Also, he just can't play as often during the week as they play. Even with rec soccer, he will sometimes have to sit out a week because he develops a tendonitis and we have to soak his legs/feet, massage them, etc. to get him operational again (he's 13 now)....

 

Now, my child was suspected of having CP, also, so a couple of other things he did may be related to some residual neurological problems (I'm told), even though he never developed CP: when he was little, the least little change in walking surface (going over the threshold of a door, bumps or uneven sidewalks, curbs, etc.) would make him fall. Even up to about age 8, if he was barefoot and the instep of his foot hit a slight ridged surface, he would fall. Also up to about that same age, when he would kick the soccer ball hard he would go down on one knee. We could get him to stop if we talked about it enough and made him super aware of it, but every season started out that way (he played from the time he was three or four).

 

The only other thing I can think of is that you'll be carrying around a toddler longer, in general, before they are able to move freely on their own. For us it was almost 2 years....

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This by Sheri also reminds me, club feet kids generally have wide feet, although they may not be so wide that you need to by W width shoes.

 

Because great toes are always going to turn in to some extent, they will generally need longer shoes than they would otherwise need. When our son was little, we had to always buy his shoes about a size larger than we normally would have in order to accommodate the inturn of his great toes. Otherwise, he just wasn't comfortable in the shoes. Trying on shoes before you buy and letting the child walk around in them in the store a little will go a long way toward establishing what you need in shoe wear. In about the last year or so, my son has finally been able to start wearing his actual shoe size.

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And Stacie reminds me that there was a lady in my church during all the years I grew up there who also was born before treatments were available for clubfeet. She had a severely twisted foot and had to have special shoes made. She always dressed up (worked at our bank) and wore the most beautiful high heels I had ever seen, complete with a strap to hold the afflicted foot in the shoe....

 

My sister was also born with clubfeet, by the way....

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I simply explained things to my older son. Most folks have one weak area or another with regard to their bodies. My older son had terrible ear infections, etc. and had multiple tubes and finally tonsils out at a very early age. My younger son still has his tonsils. Everyone is different and has different weaknesses with regard to their body.

 

I explained to my older son that his brother would need his help and so would I. He assisted with helping to shift him, get him things, etc. until he was able to walk. He helped me in getting him situated in his car seat, etc. He wasn't big enough to help carry him around, of course, but he was helpful. He helped distract him when we had to go to doctors' appointments, too.

 

I'm afraid I'm pretty old and wraps were not around within the popular culture when I had my children. However, baby carriers were around and I carried him both on my back and on my chest. In fact, his first hike through Mammoth Cave was at about 7 months old in a carrier (casts and all)....

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As was mentioned by a previous poster, google Ponseti method for clubfoot treatment. It is a nonsurgical treatment for clubfeet and when performed correctly, it is 95 % effective. My youngest daughter was treated with this method and I even had the good fortune to consult via email with Dr. Ponseti himself before he passed away almost two years ago.

 

The University of Iowa is where his method was perfected. Here is a great website with a ton of information for you.

 

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/

 

 

Also, this Yahoo group saved my sanity many times.

 

http://health.groups.yahoo.com/group/nosurgery4clubfoot

 

You can certainly wear your baby. We did all of the time. My cf daughter is almost 8 and while it seemed like a long journey at the beginning, it has turned out well for her.

 

Please feel free to PM me any time you have questions or a shoulder to lean on. The friends I have made online during this whole process are so dear to me and I cannot thank them enough for all of the support they have given me.

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I was born with a club foot. Not sure how severe nor what the treatment was 39 years ago on a Navy base in Japan, but my feet will never be elegant:001_smile: They are shortish for my height, and very wide, with super-high arches. They aren't straight when I'm relaxed, but I do walk with them straight. I twisted the ankle on the "worse" foot when I was 11 and tore the ligaments on the outside. That was a real weak point. It took years to strengthen that foot, and I wish that I had Physical Therapy before and during that time.

But... now it's strong, and has survived me carrying (before and after birth) 7 babies. And I run/jog a couple miles every other day, and walk/hike as much as I want.

All the best with your sweet baby.

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Thank you all for your responses. I called our city's children's hospital where we will probably be going for treatment, and they do practice the Ponsetti method of treatment!!! I am very excited and hope that we will be part of the majority of cases where this method works.

 

 

 

:) You're all set! It will be OK!!

Edited by LibraryLover
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You are definitely on the right path. My best advice however would be to make sure you know what the protocol entails etc prior to treatment. Many docs claim to use the Ponseti method but for one reason or another, choose to deviate from the path and not always with good results. I have heard so many different stories in our 8 year journey with this and this is the most common problem. Learn the protocol yourself and then stick to your guns. We are on our third ortho because of this and it did cause some issues for my daughter in the earlier years. You can definitely do this. Just remember that you are your child's best advocate.

 

I also wanted to just mention to you that my cf daughter is truly my hero. She has been through so many casts and other poking and prodding and she faces it all with such determination, humor and grace. She has taught me so much about being a better parent and just about being a better person. No step that she has ever taken has been taken for granted.

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As was mentioned by a previous poster, google Ponseti method for clubfoot treatment. It is a nonsurgical treatment for clubfeet and when performed correctly, it is 95 % effective. My youngest daughter was treated with this method and I even had the good fortune to consult via email with Dr. Ponseti himself before he passed away almost two years ago.

 

The University of Iowa is where his method was perfected. Here is a great website with a ton of information for you.

 

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/

 

 

Also, this Yahoo group saved my sanity many times.

 

http://health.groups.yahoo.com/group/nosurgery4clubfoot

 

You can certainly wear your baby. We did all of the time. My cf daughter is almost 8 and while it seemed like a long journey at the beginning, it has turned out well for her.

 

Please feel free to PM me any time you have questions or a shoulder to lean on. The friends I have made online during this whole process are so dear to me and I cannot thank them enough for all of the support they have given me.

 

Aw, I did not know that Dr. Ponseti had passed. :( He graciously emailed me as well...

 

 

 

You are definitely on the right path. My best advice however would be to make sure you know what the protocol entails etc prior to treatment. Many docs claim to use the Ponseti method but for one reason or another, choose to deviate from the path and not always with good results. I have heard so many different stories in our 8 year journey with this and this is the most common problem. Learn the protocol yourself and then stick to your guns. We are on our third ortho because of this and it did cause some issues for my daughter in the earlier years. You can definitely do this. Just remember that you are your child's best advocate.

 

I also wanted to just mention to you that my cf daughter is truly my hero. She has been through so many casts and other poking and prodding and she faces it all with such determination, humor and grace. She has taught me so much about being a better parent and just about being a better person. No step that she has ever taken has been taken for granted.

 

 

Yes, we have a few doctors that treat in our area. Ours did slightly deviate from the Ponseti method, but only as to personalize it for each patient. At first I got a chip on my shoulder about it wondering why our doc thought he knew more than the world expert, but once we went over things I realized that our doc was a very humble man who took everything into account. I was touched to find out that he had successfully treated a little girl who was adopted from China in her preschool years and was told that she was far too old for treatment.

 

I believe were given office stats of patients that were positive outcomes and did not need further intervention so you could possibly see if you could get that info from your doctors as well.

 

Best wishes... it's great to know ahead of time where you'll go and how it will be handled!

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