Not sure if I'm in the right place?(DS dx w/ Club Foot)
Hi everyone. Not sure if this is the right place for us. Just looking to see if anyone has any experience with Bilateral Club Feet and/or the Shriners Hospital for Children.
We were told at our Anatomy scan that DS had Club Feet. We saw an MFM specialist who confirmed this.
DS arrived Monday 12/19 at 4:46pm 9lbs 4oz! He has two perfect feet that are just crooked 
. He's only almost 5 days old and we're already getting the "looks" and stupid comments from people. In fact yesterday at his Pedi appt the nurse reached out while saying "Oh his foot is crooked". I said "Yep and you're not going to be able to straighten it out!" lol.
We've heard great things about the Shriner's hospital and yesterday I drove the 35 mintues to the closest one and dropped off our application for treament/care and his Dr's referral. I hope to hear back soon so we can start the long process!
Re: Not sure if I'm in the right place?(DS dx w/ Club Foot)
Hello! Congrats on your little miracle!!
My DS was born with unilateral clubfoot (just his R foot was clubbed).We also found out at our anatomy scan, so we had time to prepare ourselves. Sorry about the rude comments and looks that you're getting from people...some people just don't have a mouth filter. The process sounds very overwhelming at first, but time in the casts and then the brace really does fly by. DS is now 2 1/2 and he just wears his Ponseti brace at night for 12 hours straight. He will need to wear it until he's 4-5 years old, but it's just part of our routine and he's fine with it. He actually likes his brace. :-)
Are you going to have the Ponseti casting done for correction? I'm not sure where you're located but we went to the University of Iowa Hospital and were seen in their clubfoot clinic. We did travel 5 hours to be seen in this clinic and now we just got once per year. Dr. Ponseti is actually the one who started that clinic many, many years ago. He has since passed away, but the doctors that he trained in the Ponseti method are still there.
Let me know if you have any other questions!!
No, the casting doesn't cause pain. My DS adjusted very well to them. For some kids though, it might take a day or two to adjust to the new casts, but mostly I think it's just because they don't have the ability to bend/stretch their leg/foot how they want to. The casts go all the way up their thigh. My son didn't really know any different. I think it was definitely harder on me than him. :-) The Ponseti method is really the most recommended form of treatment. If your doctor recommends surgery for correction, run away fast! That could cause more problems for your child down the line.
Here is a great website on the Ponseti method (if you haven't already seen it): https://ponseti.info/parents/
I was born with bilateral club foot and Shriner's hospital in Salt Lake City has done all of my surgeries! I am now 18 and have very minimal problems with my feet. Shriner's hospital has done great on my feet, and I hope the best for your son. If you have any questions, feel free to ask I'm sure between my mom and I we could give you some information.