Welcome!!!

[jaabenny]

Thank you so much for joining the group and I hope it serves you well!  No question is stupid and no question will go unanswered!  I want this to be a forum for moms who have babies with clubfeet and for moms who simply have questions about what it's all about.  Let's support each other through the hardships, difficulties and struggles.  Let's laugh at silly photos and share stories that only we will get.  Let's discuss and debate different methods of treating clubfeet.  Let's enlighten others about why our children are casted or wearing a brace or why it's been 16 months and they're still not walking.  I hope others will find this forum helpful and encouraging.

Thank you!!

[rwells]

my son is 16 months old and has club feet.  He is having surgery on August 15 to correct it, he also has arthrogryposis so he has to have braces after his casts come off, but he is full of smiles.  He can crawl and get around just fine without walking.  I would love to hear from other moms! :)

[lcm3181]

please please please check out this site and ask questions about surgery and get all the info you need before you have this surgery done!

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


This is a site about the ponseti method. it is non surgical and can fix the vast majority of cases. you can try it. there is no trying it after surgery. i am a mommy of a clubfoot baby.  please look into it seriously!!!

Best of luck!

[Starlight22203]

This is a site about the ponseti method. it is non surgical and can fix the vast majority of cases. you can try it. there is no trying it after surgery. i am a mommy of a clubfoot baby. please look into it seriously!!!

My son has had two surgeries and we still use Ponseti. 

I agree that Ponseti is a wonderful method but it is not a one-size-fits-all treatment.  When our doctor performed our latest surgery she told us that it was a good thing that we didn't continue with Ponseti because it wouldn't have been effective.  His tendons were just too tight.  They would have never stretched long enough.  My son had gotten his cast wet about 3 weeks before his surgery and had to make an unscheduled visit to the doctor.  It just so happened that the only doctor in the office was Ponseti certified and even he recommended surgery. 

Personally I don't get my information regarding my son's treatment off the internet.  I feel that it should be a personal decision made by my doctor and myself.  If my doctor ever leaned towards one method over the other instead of being open minded about the course of treatment, I would get a second opinion in a heartbeat.  Why continue a treatment that may not work?  It only disservices the child when they are 8 years old preparing for their first surgery and the painful recovery that follows.

[ajen100]

Quoting Starlight22203:

This is a site about the ponseti method. it is non surgical and can fix the vast majority of cases. you can try it. there is no trying it after surgery. i am a mommy of a clubfoot baby. please look into it seriously!!!

My son has had two surgeries and we still use Ponseti. 

I agree that Ponseti is a wonderful method but it is not a one-size-fits-all treatment.  When our doctor performed our latest surgery she told us that it was a good thing that we didn't continue with Ponseti because it wouldn't have been effective.  His tendons were just too tight.  They would have never stretched long enough.  My son had gotten his cast wet about 3 weeks before his surgery and had to make an unscheduled visit to the doctor.  It just so happened that the only doctor in the office was Ponseti certified and even he recommended surgery. 

Personally I don't get my information regarding my son's treatment off the internet.  I feel that it should be a personal decision made by my doctor and myself.  If my doctor ever leaned towards one method over the other instead of being open minded about the course of treatment, I would get a second opinion in a heartbeat.  Why continue a treatment that may not work?  It only disservices the child when they are 8 years old preparing for their first surgery and the painful recovery that follows.

We used the ponseti method for my son.  His tendons were too short too.  He did have a small surgery called a tenotomy on each of his feet, but that went right along with the ponseti method. He just had to wear his last set of casts for 3 weeks instead of changing them every week.  That was when he was 5 weeks old.  Then he had to wear the braced shoes 22-23 hours a day for the first 3 months.  Now he is down to just long naps and bedtime until he just won't tolerate it anymore (the docs hope for 4 years old, but say they have never seen it go past 2 1/2 years).
But like you said - every case is different and not all methods will work the same for each child.

[Hollyja22]

My son was born with a left clubfoot.  He had poor casting for the first 4 weeks until I switched doctors because the people who were casting him made them too tight so he would scream in pain and have to get them cut off to find that they were gouging into him.  My doctor that I switched to was unaware of the ponseti method and had him fitted for an AFO and PT.  All the AFO and PT do was cause him stress and didn't even help keep his foot corrected.  We were referred to yet another doctor who did a tenotomy on his heel and casted him for 3 weeks... That is where we are now he is 5 1/2 months and in the Ponseti sandals for 22-23 hours of the day for 12 weeks then only at night for as long as he will tolerate them or up until 5 years old?!!!!!.  He has a blister on his heel on his Right foot from the sandal but his left foot has never looked better! His heel hasn't come down ALL the way... I hope the sandals do that? He is now sleeping better in them since I widened the bar.  It really pays to have the right doctor!! Thank GOD that we didn't go any longer with him only in an AFO! 

[airbornewife06]

My son hasn't been born yet but I have about 11 wks left in the pregnancy and at 16 wks pregnant I found out that he will be born with a left clubfoot... My husband is military and currently finishing up a 15 month deployment yep I got this baby boy as a R&R gift from God I was told I would never have kids so this baby is my miracle....  
   I told my husband that there was something wrong with our baby right after I found out and he's having trouble accepting it.... My husband will be home for good in about 3 wks then we will only have 8 wks left in the pregnancy how can I help him cope with the fact that there is something wrong with our baby and that there could be more wrong when hes born...

[rowdychick626]

You can present to your hubby some research you've done and explain that having clubfoot (especially unilateral clubfoot) is a very very minor birth defect that with proper treatment, can be corrected easily and quickly... and no one will ever know anything was 'wrong' with him when he gets older.... Troy Aikman from the Dallas Cowboys had clubfoot! several professional athletes have had it so it just goes to show you that a child born with clubfoot can lead a normal, healthy life. :)

There are lots of people in this community to give you advice and support during the adjustment of having a child with clubfoot... I also suggest visiting www.six-feet.com    WONDERFUL website (& family)  I wish I had discovered when my son was born. At least you have found out before the birth of your son so you can plan ahead & do lots of research.. You'll find Ponseti is the way to go.

Good luck & CONGRATULATIONS!!!

Quoting airbornewife06:

My son hasn't been born yet but I have about 11 wks left in the pregnancy and at 16 wks pregnant I found out that he will be born with a left clubfoot... My husband is military and currently finishing up a 15 month deployment yep I got this baby boy as a R&R gift from God I was told I would never have kids so this baby is my miracle....  
   I told my husband that there was something wrong with our baby right after I found out and he's having trouble accepting it.... My husband will be home for good in about 3 wks then we will only have 8 wks left in the pregnancy how can I help him cope with the fact that there is something wrong with our baby and that there could be more wrong when hes born...

[Kathys96]

Hi everyone, I'm new to this forum but have so many questions about my baby. I am currently 24 weeks along with my 2nd baby girl and extatic, my only concern is that she was diagnosed at my 19 week scan with clubfeet. I was born with bilateral clubfeet but never knew I could pass the condition along. I have to admit I was devasted when I first heard the term because I never knew what my condition was called until then and for 4 weeks I researched the net over and over again, in which my parents confirmed that this is what I had. Its funny that my life was so normal to me but Im so afraid that my baby can have something terrible, which they say can be related to this condition. Should I be worried? My level II sonogram showed no other concerns, baby's length, brain, heart, spin all look good and my tripple marker test came back negative...but I know that these test can only be used to screen out possibilities...please help put my concerns at ease. If it is only clubfeet I will feel like the luckiest  woman alive...guess Im just scared.

[Danielle1234]

Pregnant with my 4th and found out during my ultrasound that he may have a clubfoot.  I tried not to stress, did some light research, and convinced myself that everything would be just fine.

Today, 2 weeks later, I couldn't sleep and decided to do some more extensive research about the procedures used to correct clubfeet.  Maybe it's lack of sleep but I am FREAKED!  I was/am fine with the casting method but for some reason I had it in my mind that maybe after a couple months of casts we'd be in the clear.  Thinking of my tiny baby having to wear a brace for 24/7 or even just at night delaying crawling and walking just breaks my heart!  He has 3 older siblings that are very active... I don't know what to do!

My oldest is 6 years old.  He was born premature and had some severe motor skills and speech delays.  I've spent the last 6 years of my life trying to find doctors and teachers that I felt were helpful to him.  With all of the energy spent on him, plus chasing a 2 year old and a 1 year old, I'm not sure I have the strength to give this new little one everything he needs. 

Where do I even start?

-D

[taramasiy]

i felt i has to write to i had the same problem with my daughter and the cast being wrong i was telling them she was in pain they were telling me they know best as i was so down at the time i put up with the struggle of feeling guilty and a bam mum it was my mum that convinced me to believe in my meternal instints and while they know whats best for her medicaly i as a mum knows hows she's feeling as a baby cant tell you they need us to do that i also changer physo's and now we work together as a team and decied together on treatments and my daughter has come on in leaps and bounds

Quoting Hollyja22:

My son was born with a left clubfoot. He had poor casting for the first 4 weeks until I switched doctors because the people who were casting him made them too tight so he would scream in pain and have to get them cut off to find that they were gouging into him. My doctor that I switched to was unaware of the ponseti method and had him fitted for an AFO and PT. All the AFO and PT do was cause him stress and didn't even help keep his foot corrected. We were referred to yet another doctor who did a tenotomy on his heel and casted him for 3 weeks... That is where we are now he is 5 1/2 months and in the Ponseti sandals for 22-23 hours of the day for 12 weeks then only at night for as long as he will tolerate them or up until 5 years old?!!!!!. He has a blister on his heel on his Right foot from the sandal but his left foot has never looked better! His heel hasn't come down ALL the way... I hope the sandals do that? He is now sleeping better in them since I widened the bar. It really pays to have the right doctor!! Thank GOD that we didn't go any longer with him only in an AFO!