Thursday 9 February 2012

Tips for parents of babies with Congenital Talipes Equinovarus (clubfeet)

So I decided I need to put some tips together for anyone who might be starting the journey or is on the journey. Some of these I have found out as I go, others I found out before our monkey man was born. 

Clothing- For the cast stage-  depending on what kind of casts you get pants may or may not work.  Our casts were not as bulky as some and with needing to size up for cloth diapers we got away with pants but pants don't keep the casts clean during diaper changes.  That is where baby legs and other baby warmers/leggings (footless)come in so handy!  I didn't think I would need socks at all for the first while while he was in casts but I did need a few pairs just to keep the toes warm and for after we unwrapped the casts on the way to the hospital.  I definately didn't need many though.  We were able to fit sleepers without feet over the casts but as he grew and the casts got bigger they didn't fit well.  Mostly we used a onesie, baby legs and a sleep sack. 

For shoes/ bar don't get anything with feet unless you want to cut the feet off of them (which I have done to many sleepers), snaps all the way down both legs are great (why they make them part way and then have cuffs I don't know but I had to cut through them too).  As monkey man got more accepting of the shoes/bar we used stretchy pants but before that it was baby legs and shirts or outfits that go over the head.  Nothing was worse than having a leak and having to take the shoes/bar off and fight with him to get them back on in those early days!  The waists if you do put on regular pants have to be really stretchy otherwise they won't come down far enough to get a diaper change done with the legs spread apart by the bar. Oh for socks we were recommended to get ones that do not have the little grips on the bottom, and no fuzzy socks- inside or outside as they can cause more blisters.  Also we had to turn the socks inside out so the seams wouldn't cause blisters or sores.

Equipment tips- highchairs need to not have the bar across instead need to be open to allow the baby to go in without taking the shoes off (at least with our kind of shoes and bar).  While excersaucers, jumperoos and other such activity toys are great just remember they won't get much use.  Monkey man was allowed a little time each day only. For baby carriers I wanted to get one with a correct position for his legs (not allow them to dangle)- well I have used three- a stretchy wrap for the cast stage but it would cut of circulation I found and his feet would turn purple and swell so only could use it for short periods, a mei tai for the shoes/bar stage, and then an ergo once he was able to have more time out. 
For the baby swings and bouncy/vibrating chairs- I found a wide seat (papasan style) to work best for the casting stage, but after monkey was in shoes/bar I found he liked the one that is one that converts to a rocker better as he could sit more upright in it.  It still needs to be wide to fit the feet being apart though.  Swings need to open up for easy access and not have a fixed bar.

Things I have found that I love- baby legs and other such leggings, my little seat portable high chair, bumbo works great once out of casts, snaps all the way down legs and overalls (before this I despised overalls and snaps for changing a baby), a stroller sleeping bag because he couldn't go into a snowsuit and didn't fit in any bunting bag style ones as he was too long!

Another thing I did for the casting stage was I took a picture of each of his feet close up so I could see what they looked like at the beginning of that set of casts if I was concerned about them slipping.  They looked different every week so it helped to have a picture so I knew how far the toes were out and whether they were still good or we needed to go in for another one (he kicked off quite a few of his casts)

For blisters during the shoes/bar stage- we were lucky with our first set of shoes but unfortunately the second set has given us alot of problems on the big toes :(  What usually worked was duo derm extra thin

For shopping- during the shoes and bar stage there were a few times where I thought I would just put him in the shopping cart since by this age he was not big on laying in the bucket seat.  Then I would clue in that he couldn't go in regular shopping carts.  Things like this I took for advantage with other kids I have taken care of.  Luckily a few places have the shopping carts that work for him or I use the mei tai or stroller if it is a few items only.

Support- family in my life as well as some friends I met online who had gone through the journey or were going through the journey at the same time helped so much!  It would have been so hard without them!  I am not going to tell you it will be all fun and games- it won't be.  There will be ups and downs but look into your little ones eyes and remember that in a few years this will be over and that sweet little one will be just fine!  Many famous people, athletes included were born with clubfeet and didn't let it slow them down.  One doctor we saw said something about our baby not being a football player when we first found out and I replied "this baby will be whatever he/she wants to be!"   There are days I cried and cried along with my baby.  I wished I could take it all away for him, I hated seeing him in discomfort.  Having people to talk to online and on the phone and some family to call and get to come for a visit kept me sane on the really tough days.  The hardest days for us were the first day of a new casting, the actual casting (I am so glad my husband came to all the early castings and then my parents came for some too), and the first 2 days of the boots (I was wanting the casts back!).  I thought I was strong but I have had my weak moments more and more since monkey man was born. If you are finding my post and need support let me know I am happy to help out in anyway I can.  Also you could ask your doctor if they have a support group set up.

                                                                     "My little seat"
                                                
                                                                  Leggings over casts
                                                           Babylegs with shoes/bar
                        
                                                             His vibrating chair


One of my close up pictures to compare as the week went on


Shopping cart that works for the boots/bar 

5 comments:

  1. Great idea to post this stuff! Can I add a link to it on my blog?

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  2. Thanks for putting these "tips" together! Could I send you an email with some questions? If so, what is your email address?? Thanks again! What a blessing to find this!

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  3. Yes of course I would love to answer any questions! My email is cjsairdrie@gmail.com
    I look forward to hearing from you

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  4. We just got cast off and boots with the bar put on our 4 week old and it has been worse than the 4 weeks of casts. The back of his knee is purple and red and he's been crying ..which he never does. Is the discoloration normal after the cast comes off? Are the straps too tight? PLEASE, if anyone has any answers or tips, let us know AS SOON AS YOU CAN so our little one does not have to go all weekend uncomfortable. Thank you! If you could, please email us directly at taylorthacher@gmail.com.

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