Advice for new mom to baby with clubfeet

[momtocharley]

New to the forum and was hoping for some new information. I found out at 22 weeks that my baby boy has bilateral club feet. At first I was freaked out thinking he would never walk and be wheel chair bound, never get to do normal things and would have to endure many painful surgeries. These things all went through my head on the drive back to work from the appt... my OB literally gave me and my husband no information about the condition and at the time we were in too much shock at the news to ask before she left the room.  Anyhow, after just an evening of research I was more relaxed and now I am pretty confident in the treatment options. I am due on Sept. 24th.

So, currently I am looking for any helpful advice anyone can offer. Mainly with how to best cope with a newborn with club feet, casting and the brace (since at the moment the plan is the try the ponseti method first). What type of clothes work best at that age with clubfeet? I have a stockpile of onesies right now but haven't purchased any pants because I don't know how well they would work. Did you have problems with random people asking you why your baby had casts on his/her legs at such a young age? If so, how did you deal with those questions? Also, how old was your baby when he/she started crawling and walking?

 I am going to be using cloth diapers. Anyone have experience with this and how it worked out for them? Also, from my experience with newborns (I have a big family with lots of nieces, nephews and little cousins), diapers tend to have leaks on occasion. What happens if the diaper leaks into the cast or how did you prevent this and do you have useful methods for protecting the casts and keeping them clean?

I know I have lots of questions posted above, but really any advice would be appreciated. I am looking forward to his arrival and any information to help prepare for situations that may come up will be much appreciated.

Thanks!

[Mommy2-2boys]

Ok, first of all I feel for you because it is a lot to deal with!  We didn't find out till my son was born so talk about a surprise. We had never even heard of it before. I had all the same questions and concerns. First we took my son to a local orthopedic surgeon, who didn't know the ponseti method. The next week my pediatrician suggested Shriner's which we choose to go with. We didn't have great finances at the time. They were great with us and explained everything. My son was cast from week 1 till after he had a tenotomy (sp) clipping of the achilles tendon, at 12 weeks. He was ready 3 weeks before but they wouldn't operate till 12 weeks; they left cast on 2 weeks after surgery. Then he went to the dennis browne bar. For clothing I suggest footless sleepers, carter's and walmart had a good selection 5 yrs ago. Not looked lately but I am sure they still make them. Although I did use regular sleeps, the only problem is they are a little sung with the cast. I had a winter baby, but otherwise most should fit ok.  Now, on to diapers. The only problem I might see is the edges of the cast might get dirty if you don't have them tight enough. My thoughts are with you though the next few years!

I do have to say, it wasn't painful just a lot to deal with for my little man. He had severe bilateral clubfoot. He is four now and walks and runs just like a normal child. He does have small calves though. Otherwise you would have no clue just skinny legs! He crawled around 6 months and did just fine crawling with the bar on, it was so cute! Hope I answered all your questions. If you have any other questions you can email me at hmrisner @yahoo.com.

(: Heather/Mommy2-2boys :)

Jacob 3/5/04

Derrick 1/26/07

#3 due 3/11/12

[aminerswife]

I remember how scary it was to have a baby witha problem. my son was born with a single club foot on his left foot. i did not find out until he was born, so i am happy to hear of your forwarning and as prepared as you get i am sure it will still be hard to see when hes born. i didnt use cloth, but we never had problems with daipers or anything. i advize investing in plenty of socks! it helps to keep the cast clean and helps to conceal it in public. i bought straight legged stretch pants and had no problems. i couldnt use feety pjs or pants with band at the ankles. it was hard living with the cast at first as in changings and snuggles but we both adjusted easily. the HARDEST part was the casting. we had to hold him down everytime and he fought against it very hard which caused a loose fitting cast that would fall off or be in an inccorrect position. i didnt realize improvment from his foots appearence but i saved all of his casts and lined them up once in a while for reassurance it was workjng. i did not like not being able to bath him. tried bagging the cast, but it just became easier to use a wet wash cloth. he had surgery to loosen his tendons at 3 months and only had casts another 6 weeks. we seen his ortho every 3 months and he has had no problems. he was standing at 7months and walking at 10 months. walking has been very effective in straightening his foot forward as well. buying shoes is hard because his left foot is about a size and a half smaller and his feet are so wide. my baby is now leading a happy active life and i couldnt be more satisfied with our results. if i can answer any other questions i would be happy to. it was hard for me so if i can help anyone else through it i would love that. sorry for my broken typing... this is from a tablet.