It’s been a pretty wild couple of days, but here we are: we’ve taken the first step in getting our sweet boy treated for his bilateral clubfeet.
A little background info, since this was all new to me until I had no choice but to get intimately acquainted with all of this: Clubfeet are treated in the US with the Ponseti method, named after the doctor who invented it. It basically entails a casting phase, which lasts approximately two months + depending on how severe the case is, a minor procedure, then two brace phases. The beauty of newborns is that they’re super soft and pliable, so this condition is relatively simple to correct: it’s basically a question of stretching the feet into position, with a series of casts — so they change them weekly, stretching the feet a little more each time. The doctor will then likely do what’s called a tenotomy immediately before the last cast, which is a minor procedure where they basically clip the Achilles tendon because it’s typically too tight. They do it right there in the doctor’s office! That part sounds pretty rough to me, but some parents say it wasn’t a huge deal, so here’s to hoping… Then it’s the boots and bar or BNB phase (special shoes connected by a bar to keep the feet from relapsing, it’s a sort of brace essentially) for 23 hours a day for several months, then once they start getting mobile (ish, depends on the case again) they can wear them when sleeping only, until about 4 years old. The casting phase is the most intensive and where the real change happens, and from what I understand once the casts are off all the rest is essentially intended to prevent relapse, which small children are especially prone to. I’m just grateful that surgery is reserved for extreme cases and that it can all be taken care of with orthoses and a lot of diligence in following the program. (More details here)
Of course, “simple” doesn’t always mean “easy”!
Phase One: Casting.
We made sure to have Jonas’ two-week checkup a day early so we could get his follow-up PKU test before the casts were in place. He weighed in plenty healthy (this kid can eat…) and everything looked great, so we were good to go for the casts!
And we enjoyed our last day with those sweet little feet… I’m so glad we did his newborn photos early (can’t wait to see them!), because as much as his feet are “deformed,” I can’t help but find them perfectly beautiful. Is there anything sweeter than a baby’s feet? I also remembered just in the nick of time (seriously, half an hour before hitting the road…) to make this footprint ornament so we could remember those feet for years to come.
I’m in a Facebook group for clubfoot moms and one thing a lot of them say is to document and keep mementos, because one day you won’t believe everything that you’ve done and how much has changed. Plus, we made this same ornament with my daughter when she was a newborn (well, 2 months old…) so it’s become a bit of a tradition!
Traveling for treatment is incredibly stressful, especially in the winter when you have to drive from Wyoming to Utah via a mountain pass… I had quite a bit of anxiety about the trip, and there was snow forecast in Utah for the day of our appointment so we decided to drive down the evening before. A lot of friends and family were praying for us, and it turned out we had amazing roads the whole way — clear as could be! Thank goodness too, because it was a really long, exhausting day. It is so good to be surrounded by caring, supportive people: it makes a world of difference.
We arrived at Shriner’s Children’s Hospital about half an hour early on a Thursday morning (they do their clubfoot clinic on Thursdays only, so at least we’re set schedule-wise!). There is a playroom and some activities for Adelina, so my husband was able to easily keep her happy while I dealt with paperwork and being redirected several times before finding the right desk. We finally go back to meet our doctor and she answers questions and talks us through the process before we go to the casting room to get started. I’ve been lucky enough to never break a bone in my life, so I’ve never seen a plaster cast applied, it was pretty interesting to watch.
My husband held his other leg so it would stay out of the way and the nurse swaddled his top half to help him stay calm. He wasn’t too thrilled to be pulled and prodded at first, but once I gave him his binky he basically slept through the whole thing! It’s nice to realize he’s so flexible that it really didn’t seem to hurt him at all. Those babies are pretty resilient…
The doctor put on a mesh padded tube-sock-type sleeve over his whole leg, then started rolling plaster-soaked gauze around it, all the while stretching his foot into a gradually more natural position and smoothing out the plaster.
This is really weird, but we quickly learned that plaster heats up quite a bit as it dries, then gets cold as it cures. Also, as the plaster dries over the first day, the casts get quite a bit lighter. I thought they were pretty heavy but they’re not that bad once they’re dry.
Once we were all done, I nursed him a little and he fell back asleep. The nurse who coordinates the program gave us information and advice, and we were done!
The whole thing is a little flaky the first few hours but once it’s cured, it’s rock hard. One reason we took this picture is you need to be on the lookout for slippage: if the casts slip (which they do quite a bit apparently) then your poor little one’s feet are being forced into a bad position, not to mention they could develop sores from rubbing, etc. so the casts have to come off and you need to get fresh casts. Kind of a nightmare situation if you have to travel from out of town, it could mean extra casts… So we watch the toes to make sure they’re still sticking out. Plus baby toes are just so cute, who doesn’t want to see them!
Some tips I’ve since learned:
- Diaper-changing with casts is tricky at first, but I got the hang of it pretty quickly. The nurse told us not to flare the diaper edges around the legs to avoid extra leakage. That was one of my big fears: how to handle blowouts and leaky diapers with casts, but not flaring the diaper helps, and the CF moms also pointed out baby legwarmers: stylish AND functional!
(Babies are so crazy flexible…) If anything leaks, it gets on the (easily-washable) legwarmers, not the casts. Genius! Also, not worth putting pants, onesies and legwarmers do the trick. And of course covering up those toes with socks helps keeps them warmer.
- Baby nightgowns make nighttime changing a lot easier.
Footie pajamas are kind of a pain at night anyway unless they have a zipper, but since their legs don’t bend at the knee with the casts it’s hard to get them in and out of pant legs. Just make sure to not get the tiniest newborn gowns, they don’t have much wiggle room.
- Babywearing helps. I know not all babies are like this, but I hear a lot are pretty miserable at first — poor Jonas was a screaming mess for three days, to the point that his poor little voice got very hoarse. Tylenol every six hours (obviously check with your physician first), some gas drops (they can’t bend their legs so it seems like they tend to get gassier — again, some great wisdom from other CF moms), and babywearing really helped us. Just make sure their legs aren’t dangling. (There’s a Facebook group for this too: Babywearing for Clubfoot Babies)
The good thing: I think we’re over the hump now. Our boy is back to his sweet self today, and I’m hopeful the next cast won’t be as difficult for him as he adjusts. Here’s to hoping he doesn’t need too many casts!