A brief study of Clubfoot

Tightly would up legs

Congenital Bilateral Talipes Equinovarus.  I had no idea when I got pregnant that this diagnosis would be in my future.  When we were told at the 20 week ultrasound that our baby would be born with clubfoot on definitely the right foot and probably the left also, we had no idea what we were in for.  We tried to just forget about it, and "pray away the diagnosis".  I'm not poking fun at people that have prayed and been healed.  I prayed my HEART out that the doctors were wrong and my baby was perfect.  I prayed for Colton to be born in His perfect image, and to PLEASE have perfect feet.  I tried damn hard not to google "clubfoot".  And I didn't tell a soul for the next 20 weeks.

Bilateral, meaning BOTH feet

When he was born, I was afraid to ask.  When David didn't say anything right away, I felt elated.  Surely, he would have said something to me the second he showed Colton to me.  Surely he would have given me some indication that all was not right.  But he didn't and I felt elated that I'd actually managed to pray hard enough that we managed to stave off a lifetime health issue.  And then once we were all together in the recovery room, he casually mentioned that, "Looks like he does have that foot thing, but it will be fine".

Casts #1

I felt like my heart exploded into a million pieces.  My nightmare scenario had come true.  Casts, surgery, and 5 years of bracing followed by a lifetime of possible relapse.  My sweet baby infant losing his babyhood to hospitals and doctor appointments.

This is how good his feet looked after 9 days in the first set

I quickly learned the "lingo".  Ponsetti bar vs. Dobbs bar.  Markell boots vs. Mitchell boots.  Plaster casts vs. Fiberglass casts.  AFO's, bnb, bilateral, unilateral, complex.  I felt like my heart was breaking when my MIL insisted that Colton would be "cured" by the casts and would never have to wear his brace.  She believed in the glory of God that He would heal the baby, and his feet would be so perfect that he'd never even have to worry about a Mitchell boot.  When I mentioned to my husband that it didn't work like that, he blew up at me and got very upset that I was being negative and not believing.  But here's the thing; I WAS still praying, every DAY for the road to not be impossibly bumpy.  I cried the day Colton was casted the first time.  I cried when we came back a week later to have the casts cut off with a power saw.  It broke my heart when we gently scrubbed the casting material off his sensitive little legs that were checkered with red marks, dry spots, and painful looking places all up and down his legs, but MAINLY around the ankle area.  I was so optimistic he wouldn't need surgery and could be flexible enough that the casts would be enough.  Again, not to be.

After casts #2

The casting phase was the worst.  I felt like I couldn't even change his diaper any more.  The casts were right up against his diaper to covering the tips of his toes.  The peanut gallery on facebook said the casts didn't look good; they were too bulky and the toes came down too far.  What they didn't know is I was at one of the top rated Ponsetti hospitals IN California.  I didn't even know if they'd accept him as a patient; their referral process is for the BIRDS.  When we got the call that he'd gotten in, I was so happy.  His doctor comes well recommended, and the program is huge.  Kids travel from all over to be treated for clubfoot at the Sacramento Shriner's, so I felt very lucky we'd made it in.

After casts #3

Anyway, his knee was bent at 90 degrees, and he could no longer kick his legs to move gas along in his digestive system. He became very fussy and agitated.  He would wake up the second you tried to put him down at ALL.  He was showing signs of silent reflux, and I just knew he was soooo uncomfortable all the time.  I couldn't even give my baby a bath.  I wanted to cry every time I strapped him into his car seat because with each subsequent set of casts, it seemed like his legs and feet were rotated more and more out until his toes were practically upside down.  After his tenotomy surgery, his fat, bulky casts were squishing his toes and David actually snipped the cast back.  Problem there is by cutting the cast, he made a sharp edge that I could SEE was rubbing a sore spot on his toe.  3 weeks of that misery with no breaks.  At least with the previous 3 casts, he was cut out of them and he got about a 40 minute break each time.  The surgery casts were 3 weeks in, then cut them off and go straight to bnb.

Surgery casts

It took me time to realize that God has been with us this whole time.  I'm a member on several CF facebook groups, and I realize that Colton has been a perfect, textbook case for CF.  3 sets of casts (pretty much the bare minimum), dual tenotomy (most cases end up needing it done) 3 months in 23 hour bnb, then naps/night time for 4-5 years.  And let's ALL be honest.  It's a miracle that most of us have been blessed with "normal" babies.  Birth is so incredible and SO many things can go wrong.  If I have to have a baby that isn't "perfect" (and to me, he IS perfect), then clubfoot is a pretty good gig to have.  There are outlying cases that require painful surgeries, external fixator devices to stretch bones/tendons/ligaments, relapse after relapse, complex cases requiring custom AFO's and serial casting long after the 7-10 week mark, and in some EXTREME cases, amputation.  God has blessed us beyond measure with an "easy" and smooth experience.  We got in with a good doctor, we have good insurance, and the baby has really been cooperative with treatment.  He almost never cried both during casting, and during the removal process.  Dr. Lerman said he came through the tenotomy like a CHAMP.  Our casting techs were amazing (RIP Matt) and the atmosphere is always so upbeat and positive.

Perfect little feet, NO MORE CASTS!

I encourage ALL the parents that are dealing with a clubfoot diagnosis to trust your gut.  DON'T be lulled by doctors promising "early release" from bnb.  Even though the idea of bracing until age 5 is daunting, it's been PROVEN that the relapse rate significantly decreases.  The key is routine, routine, routine.  We gave Colton his free time at the end of the day, and once the boots and bar came back on, it was time to have a bottle and go to bed.  We went with the Dobbs bar because it allows some measure of freedom and movement.  We play with him in it, and let him kick to his heart's content.

Mitchell boots with Dobbs bar.  YES, they were a pain in the butt until they were broken in, but now we have no issues at all.

I'm grateful for our journey; Kody was a pretty damn easy baby.  Colton's been more of a challenge, but still is so, so good.  This is our journey, and we're taking it step by step, day by day.  I'm so grateful for God's grace and for trusting us to be the parents of this incredible little boy.  I'm SO excited to say that Colton has been granted 12 hour wear, and now get his "naked legs" all throughout the day.  He has slept like a CHAMP since the switch on Tuesday (KNOCK ON WOOD).  Once he's Kody's age, he'll not even remember any of this part of the journey.  I'm no longer embarrassed or self conscious about Colton's diagnosis, and I hope to encourage other parents on this same path.  Ask questions, research, advocate.  I love my baby's little feet!!!

After 4 months, we're finally FREE!!!  12 hour wear and hopefully by God's grace no more casts/surgery/long days in the bnb!