A place for moms and moms-to-be with special needs children to find support.
Wed Sep 26, 2007 7:55 am
I am diabetic, and so I am considered "high risk". Starting last week, I will have an u/s every 4 weeks and then starting at 31 weeks, I'll have them weekly throughout the remainder of my pregnancy.
At our appointment last week, we found out we're having a girl - Yay!
But we also found out that our little girl has bilateral club feet. Basically, both of her feet are severely turnded inward and clubbed. The reason for the name is because their little feet resemble a golf club. I asked my O/B if there was any chance they would straighten out before she's born and she said no, that she would require some form of treatment after she's born, and the treatment will depend on how severe it is when she gets here. The Perinatologist also wants to keep an eye on her muscle development in her legs to make sure that's not an issue, too.
SO that's where we are now. I'm thankful that it's something fixable, though, and it sounds like she should eventually be "fine". Even though it will be harder on us that on her. Have any of you dealt with this, or know anyone that has? I'm trying to be as prepared as possible ahead of time so we're not dealing with everything at the last night.
Wed Sep 26, 2007 8:54 am
I just wanted to say congratulations and good luck!!
Wed Sep 26, 2007 5:49 pm
My son has/had a left club foot and we didn't know this until he was born. He went through casts and shoes. He is now in the shoes that he will wear until he is too. It will be ok. Scroll down in this section and look for a topic called "Lizzen, question for you?" It will tell you alot!!
Sun Sep 30, 2007 4:08 am
Hi! I was just reading through your post and wanted to say that i was born with bilateral club feet (29 yrs ago!)- think they also call them 'Talipis'. They were both quite severe and i have a calf muscle deformity also. I had my first operation at 6wks old and many more after that & wore special braces to bed as a child. I especially wanted to say that nobody knows unless I tell them - my legs are skinny but I'm fairly slim, so it's not nioticeable. The only thing you would notice up close to me, if i showed you, are the scars from the operations. I now regularly water ski & snow ski & although get sore tired feet & some bruising if I do too much, i never have any problems. I hoped that when my son was born he didn't have them, (& he didn't), but if he had of, I feel like there is much, much worse things to have!! Thought you might like the perspective of someone who has had club feet! PM me if you want any advice/have any q's. BTW, I'm sure they can do even more for children born with club feet now, than when i was born!
Fri Nov 16, 2007 11:44 am
Hi there! Congrats on your little girl!! I'm sorry I didn't see this post earlier, I haven't logged on in ages. My little ones are keeping me super busy. My son, Zade, was diagnosed with BCF at my 22 wk scan. I was followed by a peri for the remainder of my pregnancy. All the scans showed BCF, when he was born it was just a left CF. He just happened to like resting his good foot over his clubbed one. The most important thing is to find a good doctor. We just celebrated our one year anniversary of his first cast. I'm proud to say that my little man is just perfect and NEVER stops moving. You can see video of my little one climbing up a slide at just 8 months old at our website and click on "Zade". I'd also recommend, if you haven't already done so, joining the clubfoot support group on Yahoo. It's called nosurgery4clubfoot. Please feel free to PM if you have any questions. Good luck and Congrats again!
Montemn!! Your little man is getting so big, I'll have to post some pics of Zade soon.
Last edited by lizzen
on Fri Oct 29, 2010 8:04 am, edited 1 time in total.
Fri Nov 16, 2007 12:19 pm
Thanks! We found out at our 21 week scan that it's a little boy, not a girl which is what he'd thought at our 17 week scan!
But we couldn't be happier. And our little guy definitely has bilateral CF. We've got pictures of both feet, individually, and both are turned in at 90 degree angles.
How long did your little guy have to wear casts? Did he require surgery?
And does it affect them trying to walk? Trying to be as prepared as possible!
Mon Nov 19, 2007 6:11 am
Well, as a mom to two boys, I can tell you you're in for an awesome experience! I love having boys! We also had several shots of Zade's feet and they were both turned in past 90 degrees but once he was born we found only his left one was actually clubbed. The peri was very surprised because not once did his right foot straighten out during my pregnancy. But either way, it's correctable.
Zade got his first cast at a week old and he had a series of five casts changed every 7-10 days. At ten weeks old he had a tenotomy which is where they cut the Achilles tendon. The tendon on CF babies tends to be very tight, limiting their dorsiflexion, so most require this procedure before they go into the brace. He was in his last cast for three weeks while the incision healed and then he went straight into his brace. He had to wear that 23/7 for the first three months, and now he's down to night and naptime wear.
This is going to sound crazy, but if anything I believe that the casts/brace have actually helped his development by increasing his strength. At just four months old he was able to sit up using only his abdominal muscles and his thighs are all muscle! He's been climbing since he was just shy of eight months old and is starting to walk now. He turned a year on November 2.
It sounds like you've got a pretty good handle on things. Don't let the CF worry you, just enjoy your pregnancy. I worried about it constantly and his feet were all I ever thought about. Now looking back I wish I'd listened to other parents telling me to stop worrying. Be sure to take lots of pictures of his feet because you'll forget quickly just how far he's come. Oh, and the cool thing about the casts is that you've got a great excuse for stocking up on cute Babylegs! They look adorable over the casts and are handy when he goes into his brace as well!
One last thing...make sure to find a Ponseti-certified doctor for your son's treatment. Clubfoot IS easily correctable, but casting done incorrectly can cause more harm than good. The most important thing you can do right now is to find a competent doctor.
And don't be bullied into having him casted right away. They tried to do that to me in the hospital and I wouldn't budge because I didn't want a doctor I hadn't researched casting my baby. It's actually recommended by Dr. Ponseti himself that parents wait a week to two weeks before the first casting so you can have some time to bond, recuperate and enjoy your baby, crooked feet and all!
Any other questions you have, feel free to ask!
Mon Nov 19, 2007 8:37 am
Thank you so much for the encouraging words! And I've tried really hard to enjoy the pregnancy, knowing that I can't do anything to "fix" his problem until he gets here. I think I'm doing a pretty good job so far. It's a little sad when someone gives him a cute little outfit (pants) that I know he won't be able to wear, or cute little booties or socks.. but I just thank them (not all of our friends/family knows yet) and move on. And if nothing else, I am just thankful that with all of the problems he could have had because of my diabetes, that he has something that's fixable and not life threatening!
What are "Babylegs"?
Mon Nov 19, 2007 9:44 am
Oh Babylegs are so cute!! There's a thread in the Babies Forum, I think, that shows pics of babies in their Babylegs. They're basically leg warmers for babies. They've got all sorts of cute designs, argyle socks, skull and crossbones (cute ones), harley flames, cow print..tons of options. It's cool because you can slip them on over the casts to make them match his outfit. They also help to wick the moisture away when the cast is first put on and still drying. An added bonus is that they sort of obscure the casts so you don't get quite as many curious looks from people. Love them! Then of course they're handy with the brace because you don't have to take them off for diaper changes.
I know what you mean about the cute little outfits he won't get to wear. Even though everyone knew about Zade's CF, we still got stuff with feet. But once he was here it didn't really matter. The only thing that still bothers me a bit is some of the really cute stuff I had from my older son that Zade never got to wear.
I see you're from Texas, there's a Ponseti doctor there, Dr. Lund, who is supposed to be just incredible. There are a ton of parents on my CF support board who go to him and say he's just awesome. A lot of parents have to travel across several states to see a certified doctor. We actually have a pediatric orthopedic surgeon two miles from our home but we opted to go to one about 30 miles away because of his reputation. It was worth every extra mile without a doubt.
Sun Mar 09, 2008 12:17 am
I was born with feet that turned inward (they rolled at the ankle) 27 years ago. I was still walking at about a year and had to wear the orthopedic shoes until I was about 3 or 4. I actually remember it. They were kind of big, heavy shoes, but they straightened me out. My feet turned out okay and I was even a athlete in college. I am a little flat footed now, but it has never bothered me or given me any self-esteem issues. There are so many orthopedic options for babies out there with foot problems.
Mon Apr 21, 2008 10:03 am
Just to let you know, I am 42, and had the bi-lateral clubfoot when I was born. I wore a brace from 1 week on, 23 hours a day, and when the brace came off, I walked with no problem. I never crawled, though, and that made my mom argue with her human development professors in college who told the class that babies who didn't crawl were usually learning disabled. She told them I didn't crawl, and was consistently in the all A honor roll list, etc. and they ended up changing their thinking on that somewhat! I was not good at sports, mostly due to my lack of grace, but I was in marching band and show choir all thru high school, and I have had no problems. Also, none of my children have had any problems. Although I have a teenage boy who has problems getting off the couch from time to time-haha!
Tue Apr 22, 2008 7:24 am
My daughter also has BCF (diagnosed at 22 weeks), as well as Spina Bifida. It's been a lot to accept, but we're there now and looking forward to meeting our daughter!
We're very excited because we live within 2 hours of the experts in both Iowa (Ponsetti) and St. Louis (Dobbs), who apparently is a student of Ponsetti and has developed a new, more flexible brace.
Here's a link about the new brace: http://www.wuphysicians.wustl.edu/news. ... me&NavID=1
We're also becoming affiliated with Shriners hospital in St. Louis to receive treatment at a reduced cost. Hooray for the guys in the fez!!!
I'm not sure if she'll walk or not, based on her Spina Bifida. Still, I know her BCF can be corrected and that gives me a lot of relief. And since she'll have limited feeling in her legs, the correction may not be too painful for her. I guess there has to be a bright side, right?
Fri May 02, 2008 7:18 am
Well, our baby boy was born and definitely had the BCF. He was put in casts at 7 days old and wore them for 4 weeks, having them changed once a week. Then after the 4th week, he had a heel cord release surgery and placed in his 5th set of casts that he wore for 3 weeks straight. Those came off and then he was put in the braces - the shoes connected by a bar. He wears them for 23 hrs a day for 3 months and then only during naps and bedtime until he's at least 2, but probably longer, depending on how well he's doing in them.
He's been such a little trooper. He will be 12 weeks old next week and unfortunately he doesn't know life without casts/braces, but the fortunate thing is that he won't remember any of this. It's been hard on my husband and me, mostly with the braces because Alex can get pretty fussy putting them on, but it gets a little easier each day. Only 9 more weeks to go that he has to wear them all day.
Thanks so much for all of the encouraging stories! The dr actually told me that we will forget about how hard this was. I told him that is highly unlikely and he said the first time we see Alex running down a field or on a playground, that we won't remember all the tears. Looking forward to that day!
Sun May 04, 2008 3:09 pm
You know, my soon-to-be husband has pretty bad club feet and when he was born he stayed in the hospital with casts and all that til he was 4months old. Now he still has one foot turned inward but it doesnt stop him from doing anything. He runs, he plays sports, etc. It's really not as bad as some people make it out to be. As far as I know, he's still perfect and so will your child
Just a lil picture to brighten up your day...
See, wasn't he just the cutest thing ever? (the baby)
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