Wednesday, May 18, 2011

Adventures with Club Feet

It was late September 2010 when my long awaited ultrasound arrived. I was 18 weeks pregnant at the time.We found out we were having a little boy and we were so happy! But then the ultrasound tech mentioned that he appeared to have a club foot. Hmm...a club foot. It sounded familiar but I wasn't sure what it meant. The doctor was called in and confirmed that he had not one, but two club feet. I must say, they looked pretty darn cute. However, it was pretty overwhelming for both of us to learn about everything club feet entailed. In no time, Ponseti, castings, AFO's, tenotomy, Shriners Hospital, and bilateral club feet were just part of our vocabulary.

Left club foot on ultrasound at 18 weeks.
One of Allen's club feet on ultrasound at 30 weeks

When I was pregnant with Allen I nicknamed him "little foot" because he was always sliding one of his little club feet along my side...even to the point of bruising me! Anyway, I was glad that I knew about Allen's club feet from the start. It was really helpful to be prepared and know about the typical treatment plan. When Allen was born I noticed his adorable little feet right away. They were so cute!





I thought Allen wouldn't be able to wear cute little footed PJ's with club feet. But he totally could before and after the casts! Before the casts they just turned in all cute...hence the club feet.

Check out his monkey feet...

While Allen was in the NICU we applied to get into Shriners Hospital and were quickly accepted. We scheduled his first appointment when we weren't even sure if he'd be home from the hospital yet, which ended up being just a few days after we finally took him home. Shriners Hospital's club foot clinic became a part of our lives in no time. It doesn't seem like a doctor's office or anything. It's more of a fun little place. The doctors there are great. Allen got his first set of casts just one day shy of his two week birthday. His regular doctor at club foot clinic, Dr. Woiczic,  evaluated his feet and went right ahead with casting. He also saw other doctors there like Dr. Santora. He was really entertaining and would tell jokes and sing cowboy songs while doing the casts.

The casting method used is called the Ponseti method. It's named after Dr. Ponseti who developed the non surgical method of club foot correction. It involves a plaster cast that goes from the tip of the toes all the way up the leg to the top of the thigh. They simply position the foot where they want it and hold it with the casts. The serial casting was done weekly to evaluate the feet and reposition the feet how they needed to be. They over correct the feet a bit because club feet want to be club feet and will try to turn in again. The Ponseti method has great results and one of the best things is that it doesn't cause long term effects like surgery would; like stiffness or scar tissue in the feet. The tenotomy surgery that's usually involved is just a minor surgery that is done before the last set of casts. It allows more flexibility in the otherwise tight achilles tendon. Okay, explanation of club feet treatment over ;)

The first couple days of the first couple sets of casts were rough. Allen was pretty fussy and wouldn't eat much. But with time, Allen got used to them and tolerated them well. He even learned to have fun with them by banging them together and lifting them as high as he could. The casts weigh more than a pound so he got some strong legs!  At first, Allen's casts made it a little awkward to do things like hold him or change his diaper, but I got used to it in like a day.

Allen always tolerated getting the casts on really well. The doctors and nurses often commented on what a good boy he is. He'd just chill while getting a bottle or sucking on his binky. He'd get a little nervous when they used the loud electric saw to cut the casts off on cast change day. But he even handled that well!

Just another set of casts...

Every Monday, we went to Shriners for cast change. The routine involved getting the casts sawed off, clinical pictures to record his progress, giving him a real bath in the sink, slathering him up in lotion (those casts can cause some serious skin irritation and dryness) and recasting. He always had that new cast plaster smell about him on Mondays ;) His feet changed very rapidly. I was surprised how fast they were corrected!

Allen's feet after one of his first sets of cats. Amazing!

The repositioning of his foot caused this crease in his foot. Luckily the doctors said it probably didn't hurt.

 The casts just became a part of our lives...

They turned the feet outwards to over correct them. Looks pretty uncomfortable to me!

Allen on casting #4


It's not easy having to be extra careful about keeping those casts clean. One day he had a huge diaper blow out (actually this happened twice). It was really nasty and got all down in the casts and all over them. I'm amazed I was able to get him cleaned up as well as I did. Let's just say baby legs became our best friends. They were more than a fashion statement, they were little cast heroes!


In addition to having to keep the casts clean, I had to be extra careful about keeping Allen super clean. Mustela Stelatopia No Rinse Cleanser was another one of my best friends! Although Allen got a weekly bath on cast change day, he also got sponge baths at home.



At the fifth casting he had x-rays to determine if he would need a tenotomy, the procedure where they cut the Achilles tendon to lengthen it so it's not so tight. The x-rays confirmed that he would need the procedure. When Allen was 7 weeks old he had his surgery done. He was completely awake for it as it only required local anesthesia. Being the good little boy he is, he didn't cry at all. The procedure itself only took a couple minutes. The rest of the time was just for putting on his LAST set of casts! So Allen got a total of 6 casts. The final casts stayed on for 3 1/2 weeks to allow the surgical site to heal and hold the feet in position.

 Waiting to go back to surgery...
He passed the time by riding around in a fire truck...
When I got him home I found that my baby still had a label on his back...gotta love my baby with a bar code!

The final set of casts seemed to last awhile. I was so excited to have him be done with them! I'm sure he was excited too. I mean he's the one who really had to deal with them! On his blessing day we had everyone sign his casts...



It says "I love you Little Foot! Love always, Mommy" Remember, that's the nickname I gave him while he was in utero ;)

I really enjoyed getting to know other parents with club foot babies. Club foot clinic was a bustling place. I'm surprised how common it is. It's actually one of the most common birth defects. Almost all of the babies/kids in club foot clinic were boys...it definitely seems to be true that club feet are twice as common in boys than girls. Anyway, we were able to share our experiences and such, which was nice. The day Allen got his casts off we met like three more babies getting their first sets of casts on. The parents were asking us for advise and what our experience was. Having been through the adventures of club feet it was great to be able to tell them that, although it's a bit of a nuisance, it's really not all that bad. In fact it's much easier than I anticipated.

Oh and just a couple funny things as a side note about our experiences...Let's just say little babies can have some seriously stinky feet when they've had casts on! Also, we know by personal experience that people do in fact stare and look at you like horrible parents. Yes, we were asked more than once why his legs were broken. We got used to the simply saying, "he was born with club feet."

When Allen was 11 weeks old the day finally arrived. He was done with the casts! It was so awesome not having to do the recasting part of our little ritual. And his feet looked GREAT!

So excited to see what's under that fluff!
Tada! (The ouchie looking area is where he had his surgery)
So happy to be free!
Getting his final clinical photos done

It's amazing what they can do. I'm REALLY grateful for modern medicine and great doctors. They really made it a decent experience for us. And I'm so grateful that my sweet little boy will be able to walk and run like anyone else. I've contemplated how, if it wasn't for this treatment, he would be crippled. It's so sad to think about.  What a blessing that modern treatment is available to us. Oh and I'm also so grateful for Shriners Hospital. They doctors and nurses are great and treatment there is 100% free. Amazing :)

Well, the next step after the casting experience is the AFO's, which are made up of a Ponseti bar and Mitchell Shoes that hold the corrected feet in place. So after getting a nice, long awaited bath in the sink, we headed on over the orthodics to get fitted for his brace. They looked pretty cool, kinda like a snowboard, and Allen didn't seem to mind them at all. They also felt MUCH lighter than those heavy casts. I had read a lot, like on my club foot support group, that the bar was a real hassle. But we have found that it's really not. We like them a lot better than the casts. (Oh and the casts weren't as bad as I thought they'd be either) Anyway, Allen loves being able to bend his knees with his AFO's on. He wiggles around like crazy, slides his feet up and down, and slams them on the ground. Funny boy!

These are pretty cool mom!
Snowboard Dude

I have loved having the AFO's because I can FINALLY see my little boy's feet again! Who knew feet good be so lovable? We're allowed to have the shoes/bar off for one hour a day. That's our happy time! Allen doesn't complain about the shoes/bar but he LOVES having them off. It makes me emotional just seeing him kick his feet and smile. I also love being able to hold him without any extra equipment! From the day he was born until he was 6 weeks old he had wires, monitors, oxygen tubes, etc. And from the time he was 2-11 weeks old he had the casts. And now, 23 hours a day, he has the bar/shoes.

During the hour of free feet time I massage them and let him kick around. And I get a precious hour of holding my baby and JUST my baby. I love it so much! I hope no one takes such seemingly normal or little things for granted. I also got emotional when I got to give Allen his first real bath in the tub at home during his one hour of free time. You know, like filled up with water that he could splash in. And that's exactly what he did. He smiled and excitedly kicked his feet. I think I cried happy tears!

Yay for bathtime!

Well, the plan now is that Allen wears his AFO's 23 hours a day for three months straight. After that he'll wear them for just naps and nights which ends up being 12-16 hours a day until he's about four years old. We have to strictly follow the guidelines or he could relapse...and we don't want that. It's been quite an adventure. Our sweet little boy has been such an example to us. He's handled it all so well with a smile on his face. His patience and positive attitude through everything he's been through, club feet and beyond (he was sick the first 6 weeks of his life) has been inspiring! My little boy is truly an example to me. I love my baby boy!

Being silly during "bar free" time
Tummy time is much more comfortable now!

And here they are now...Allen's club feet are no longer club feet! Though I must say, I actually miss those little crooked, turned in feet. But I'm glad they're all better now so he'll be able to walk, run, and play like every little boy should!

Allen's beautiful, perfect little feet