I have 3 children, the oldest was born 3-16-2000 with a left clubfoot. We were not aware of her foot prior to birth (despite numerous ultrasounds) and have no family history of clubfoot.
We started off treatment with a local doctor who thought her foot was mild and that he'd be able to fix it. He exuded confidence, had a wonderful bedside manner (and 3 little girls of his own) and we completely trusted him. Eventually, progress stalled and he referred us to another doctor. That doctor wanted to operate on my daughter's foot to correct it.
At that point (4 months of age) I started looking for support online for my daughter's pending surgery and found out about the Ponseti method.
Long story short- we brought my daughter to Dr. Ponseti himself and never looked back. He corrected her foot with 4 casts and a percutaneous tenotomy (in-office procedure). Her foot looks and functions completely normally.
I have spent the past 7.5+ years on various on-line support boards helping other families with clubfoot, doing personal research, and participating at various clubfoot events whenever I can.
We previously lived in Michigan, and now live in Illinois.
Jenny
Mom of Kelly (3-16-00, lcf) and 2 other non-cf kiddos.
Julianne
All of our boys were treated with the Ponseti method at Shriner's hospital in St. Louis. However our original Dr only did it half way. He took both the older boys out of their braces at 18 months. We decided to switch Dr.'s and due to them being taken out of there braces early they have had to be re-casted and have had to have more surgeries. They have both had tendon transfers.
Our youngest is almost 3 and wears the braces at night religiously and will till he is 4 (just as Ponseti recommends).
We are expecting our 4th in September. I pray that this one doesn't have clubfoot!!! However if it does, . . . . I suppose that we will know what to expect and live through it!!
My youngest son was born clubfooted. We knew nothing about it until he was born. It has been very tough road. He had his first surgery in Jan of '06. It was unsuccessful. He had his second surgery in March of '07. In June of '07 he took his first steps. We have done the cast,the bar, the AFO's. We still think that he is going to have to have more surgeries but not sure at this point.
My name is Laura and I have a 14 month old daughter with a clubbed foot. My daughter Lily is my first child and so I am learning as I go. Lily was fortunate to only be born with one clubbed foot (right foot). Two weeks after she was born we went to her first orthopedic pediatrician and we went through a series of casting then, she had her first surgery after two months. After more castings and finally three months of braces, the doctor looked at her foot again and told us that her foot was turning under ("the nature of her foot") and that she needed surgery again sooner than later. Well, I couldn't help it, I needed another opinion. Of course, the doctor Lily was seeing recommended his partner. Oddly enough his partner said "no surgery, we can correct this with more casting and braces". I was shocked and happy to hear a different outcome. So Lily started to see the other doctor (the partner). Lily's dad and I figured out why he felt he could correct the foot with the casting and his partner couldn't. This other doctor would manipulate the foot so far over (without the cast on) then put the cast on, and manipulate the foot again. Of course I had a screaming baby who was about to pass out from the pain. Later on that night, her leg turned a blueish color. Well, the doctor's nurse over the phone told us to keep it on until the next day...Lily was still screaming in pain. I took off the cast ( the doctor showed me how that day) and, well she stopped screaming. The next day, that doctor dropped us for not keeping it on. This doctor and his partner were supposed to be the best in my city. I felt doomed. It wasn't until someone recommended UAB...I made an appt. with one of their finest orthopedic pediatricians and it's been a blessing ever since! Lily actually loves the doctor, and he truelly cares about her. This was a miracle!!!! We did have to go through another surgery, but everything went so smoothly...her foot looks good and she's a happy girl.
Hello Everyone!
My name is Jessica. I have been married for 2 years and I had my first baby in February. He was born with both feet club. We knew what we were in for from the ultrasounds that I had. My husband had "special shoes" when he was an infant also but we aren't sure if he had club feet or if he was severly pigeon toed (we get two different stories). I was so scared when I was first told, and to tell you the truth, I blamed it on my husband (and his genes). Club feet was never mentioned before we found out our little Charlie was going to have it. I know it wasn't my husbands fault and have since stopped blaming him. :)
Charlie got casts when he was 5 days old. I cried my eyes out because I had no way of comforting him with those big bulky things on. Thank Goodness we have a wonderful doctor and nurse! They have helped us sooo much! They have given us little hints that they have found works for other patients and it makes such a difference! Charlie is now only wearing his braces at night. He did have his tendons clipped. He went through 4 castings, got his tendons cut, then had the 5th casts for 3 more weeks. His feet look great! The only thing I regret is not getting a good picture of his feet before his first casts. We thought we were going in for a consultation...well they casted him in about 15 minutes. I just wanted it so he will know for when he has children (Since my husband never knew).
Charlie will be 7 months the beginning of september. His "special shoes" and casts never slowed him down. I actually have to buy the really tall socks that go all the way up to his knees so that when I tie his shoes i can fold the socks over the bows so the little monster can't untie them :).
I didn't know what I was going to do when I found out about his feet at the ultrasound. I was nervous and angry, wondering why it had to happen to us, but when he was born, he was the most perfect little boy I have ever seen...feet and all.
Charlie with his special shoes :)
Hi, my daughter Lilly was also born with bilateral clubfeet. We didnt know it until she was born. My husband too had club feet when he was small. He had many surgeries to correct his feet, and he is very lucky to be able to walk today. My daughter was for 13 weeks in casts, and her feet were corrected using the Ponseti method and now she is in the brace. She has been for 3 weeks now. She has a really bad sore on her right ankle. I guess i didnt get her foot all the way in the shoe correctly. It is a learn as you go situation. I feel really bad for her, but she never cries like she is in pain. I have to work on getting her foot a little further down and back in her shoe. We went to the doctor today, and he said leave the shoes and brace off and come back tomorrow. He also bandaged it up with some antibiotic ointment.
My daughter was also born perfect, just not her feet. I have to say she is the happiest little girl i have ever been around. In spite of her problem with her feet,the tendon surgery, and having the sores, and wearing the brace and shoes..and well you all know what i am talking about. She still laughs all the time. She is 4 months old now, and she can already roll over, with the brace. I havent seen her do it without the brace yet, so maybe it actually helps her. She is a real blessing and her 4 yr old brother is totally in love with her, and her special shoes..we call it her little snowboard. I am looking forward to hearing from other mothers and also any tips or suggestions that may help my little girl.
Hi! My name is Brandy...I am actually a step-mother of a child with club feet. When I met my husband, my little girl was 19 months old. The poor babe had already been through Ponseti casting, the tendon clipping, AFO's at night, Dennis Brown and was on the brink of a Post Medial Release or a Full Release. She was born with bi-lateral clubfeet, and to my knowledge there is no family history of clubfeet. Her birth mother disappeared from the picture shortly after she was born and does not have anything to do with Kenzie. Kenzie went through the surgery and spent 3 months is casts varying from long casts (hip to toe) to little bootie casts (below knee to toe) She is a trooper though...she walked the bottoms off of every set of casts they put on her. She walked with her knees bent and her toes turned out. We got put in the Dennis Brown brace again after the surgery, but she would not tolerate it at night, so we were forced to wear it during the day. She even learned how to get around with it on. She reminded me of a baby just learning how to walk, just cruising furniture. We knew shortly after we got out of casts that the surgery was not enough and we were going to be faced with more down the line. She sees the "best" orthopedic surgeon in New Mexico and surrounding areas. I respect her surgeon very much because she encouraged us to seek other opinions, she too is puzzled with Kenzie's stubborn little feet. She wanted to repeat the Release a year after the first one but we saw a more seasoned surgeon in the "re-do" category and he suggested that we hold off on surgery as long a possible. We got AFOs for both of her feet and went back every so often to have them adjusted or get new ones if she grew out of the old ones. I started contacting the Shriners because I had heard a lot of amazing things they could do and was hoping for something the could do that was not surgical. We saw the Shriners a week ago. The surgeon for the Shriners told us that they would accept her into the program but really recommended that we got back to our surgeon because she was the "best" That made us feel really good...Kenzie has been recieving the "best" her whole life. We decided to take his advice and go back to our surgeon. She is going to repeat the Full Release, do the tendon transfer, and cut and pin the bones that run on the outside of her foot straight. Kenzie just turned 4, and they say that 4 years old is the prime time to do a tendon transfer. I am worried about how the 12 weeks of casts is going to go...Kenzie is VERY active. Her surgeon is going to do one foot at a time so she can maintain some of her mobility. We are just praying that we come out on the other side with better results than last time! Our first surgery is in Jan 09.
Has anyone had this happen?
- Pocahontas-1979
on Feb. 20, 2008 at 3:41 PM