Tuesday, January 10, 2006


Bet you'd never guess that Kristi Yamaguchi, Mia Hamm, Troy Aikman, Dudley Moore, and Damon Wayans were ALL born with clubfeet. :)

Monday, January 09, 2006

More to come

Soon I'll be adding links to Ponseti information, other clubfoot kids, and a few other goodies. Stay tuned!

Ian's feet...almost 2 1/2 yrs old

Quirky little toes...as you can see, Ian has a large gap in between his big toe & the others. He also still curls his toes under, but not as much as he used to.
Cute, aren't they?

This bottom photo shows how much dorsiflexion he's lost.

Trouble w/ shoes AGAIN

Although these 3 mths in the shoes went well, we started having trouble afterwards. We went through a few pairs trying to find the right size, and even managed to break off chunks of a shoe banging it against the floor. We were glad Ian was able to test these shoes for Mr. Mitchell, as he was still trying to get the correct design for toddlers down. LOL Stronger plastic. Definately.
Ian started getting raw spots under the straps, toward the inside of his foot. Again, we tried everythng to help, but with no luck. We even went back to the old Markell shoes in the hopes it would help. We always ended up with raw areas again. We knew how important the shoes were, and yet Ian was always hurting and we were sleep deprived. We'd try again every few days or weeks with no luck and then stop again.
In Oct. 05 we took Ian back for his foot checkup. Dr. Von Stein said his feet looked good but he had lost dorsiflexion (heel cords tightening up again). Her recommendation was to leave him alone at this time unless it got worse. She did not have much advice about the shoes but sympathized and told us to do our best.

(We're now finally up to date in our story!)
In Dec. I called Dr. Ponseti to ask for advice about the shoes. He recommended coming back out to get help with it, because that's a big part of what they do out there, getting the families to comply with the shoe part of the treatment. He also recommended being aggressive about treating the loss of dorsiflexion and possibly getting a new casting.
Our trip is scheduled for the 5th of February. We will again stay at the RM house. We are praying for good weather for the trip, room at the house, and no sickness until we go (wouldn't be able to stay at the RM house with germs!). We are also praying Ian does not need a casting and the dorsiflexion can be regained with the shoes.
More in a few weeks!

Ian in Mitchell shoes

Sitting up & rolling over in shoes

Baby on the go

Home we go...

At the end of the week we had our follow up appt. They took off the cast, manipulated both feet, and put casts on BOTH legs. I was not prepared at all for how heavy a big 6 mth old baby could be with 2 wet plaster casts on, but I thought my back was going to break as we carried him out of there. LOL We drove home that afternoon to Cincinnati with a very unhappy baby and a new pair of the coolest shoes we'd ever seen. Ian cried all the way from Iowa to Ohio and it was a looong drive.
I believe it was a wk later that we went to remove the casts at Ian's orthopaedic doctor here and got started on the shoes. Once again we'd have to use the shoes full time for 3 mths.Ian learned how to do everything in those shoes from crawling to taking steps, and even found ways to sleep, with some help from well placed pillows and rolled up blankets.

Some new friends

More Iowa pictures

A week in Iowa

That night after the appt was absolutely terrible. They had sent us on with some Tylenol and told us it would be enough. But Ian's foot swelled more than normal and he screamed the house down until about 2:30 when they called in some Tylenol w/ codeine for him. Brad had to drive out in a heavy snowstorm to go fetch it!
Now, Ian at this point had a pretty high pain tolerance. Not only had he dealt with the feet problem, but he was also used to reflux and had been through a hospitalization at 2 wks old w/ viral meningitis. But he was in some major pain that night and nothing calmed him. We walked, swang, sang songs, prayed, and cried for half the night. Even after Brad came with the codeine Tylenol Ian still woke & fussed on & off until morning. NOT a fun time.
But the next day he did better and the swelling had gone down. We kept ourselves busy in the playroom at the house, or at the mall or childrens museum. Anna was a trooper but being away from home was getting to her.

Iowa City here we come

In February, we packed up the kids (Ian who was 6 mths old & Anna who was 3) & drove out to Iowa City. We stayed at the Ronald McDonald house, which was an amazing place and I encourage you all to support it in any way you can. Volunteer, make some meals, donate items, save pop can tabs, whatever. If not for them, we would have had to spend money on a week's worth of hotel and restaurant bills.
We were lucky to be there for a week, many families had been there for months and months. While we were there we were able to meet some other clubfoot kids. Anna made quick friends with Cassy and we even met a little girl all the way from China. It was very encouraging to see them run and jump and see how normal their little legs looked! I also loved looking at all the pictures and letters of all the clubfoot kids that had stayed in the house, which lined the walls.
Our appt was on a mon, and they cut Ian's left heel cord again. It was done with just a local injection, with me, my husband, and Anna in the room. I was shocked at how quick and easy it was. They recasted it and told us to come back in a week.
Dr. Ponseti was absolutely wonderful, as was everyone else in the clinic. It was also nice to see the quilt I had read about that some famiies had made for him and was hung up, showing pictures of various babies.

Not quite fixed yet.

After struggle with the shoes for a long time, we emailed Dr. Ponseti and sent him x rays and pictures of Ian's feet. He told us that Ian had an atypical foot (the left one) that would need a little bit of a different manipulation and perhaps another tenotomy. We made an appt to see him in February of 04.
We also chose to go there because we did not want Ian to have to go under general anesthesia again. The risk of complications is small, but we didn't see the purpose if it could be done with a local injection.
We were extremely impressed with his quick response, his caring attitude, and the approachability of his office.
Dr. Ponseti also mentioned there was a new kind of shoe available, called the Mitchell sandal that they were having a lot of success with.
Unfortunately, our insurance did not agree with our need to go to Iowa and they refused to pay the bills for it, despite a few appeals. Grr...

Before we go on, so who is this Dr. Ponseti anyway?

Dr. Ponseti is the man who pioneered the method we are using. He is 90-ish yrs old and still sees babies out at the U of Iowa hospital. You can read more in the links, but basically, years and years ago, after studying clubfeet carefully, he came to see that the tendons and ligaments in clubfeet are actually very flexible and could be manipulated into the correct position. With this deformity, the feet are actually formed normally in the womb, but something happens in the 2nd trimester that causes them to twist and tighten. Lots of speculations as to why, and hopefully they'll find answers soon. We will actually be participating in a study through the University of Texas to help find the clubfoot gene.

Anyway, back to Dr. Ponseti. Unfortunately, many other collegues dismissed his ideas and continued to do surgeries. It has only been recently, with the advent of the internet, that families using this method have made websites and help spread the information that there is an alternative. More and more doctors are now being trained in this way and there have been projects set up overseas to teach it. This is especially important in poor countries that don't have the resources or money for surgeries. The Ponseti method is low cost and easy to do.

Dr. Ponseti has a lot of grateful parents out there and a lot of happy babies too.
People call him Papa Ponseti for a reason.

Celebrating Ian's first REAL bath!

This tub is the mother of all baby tubs...it's called the Euro bath. It's huge, and it would have been absolutely perfect for those long cast-softening baths every week. It has lots of supports in it to keep the baby upright and steady. Unfortunately we didn't discover it until very late...

Stage 3-full time dennis browne bar

After those casts came off, it was time for the dennis browne bar. For 3 months it must be worn full time, except for an hour off a day (for baths and exercises).
It was SO good to be done with the casts, with the weekly vinegar baths, with the plaster dust everywhere! It was SO nice to see his little legs again after being hid away for over 3 months! His feet were little pudgy things, and the casts create a lot of extra skin around the ankle bone that kind of look like those wrinkly pups.
Eventually the babies grow into that skin!
We had a very difficult time with the shoes staying on. His worse foot, the left, kept popping out. The shoes must be pulled as tight as possible and worn with socks to eliminate friction as the baby moves which causes sores. But it just would not stay on, even after placing a foam pad at the top back of the shoe above his heel.
We did the best we could though.
The dennis browne bar is essential in preventing relapses and must be worn according to the guidelines. Without it, 80% of the of the feet relapse.

2nd stage-tenotomy

After about 6 or 7 casts Ian had a tenotomy done. This is where the achilles tendon is cut so that the heel is able to drop down and can be planted flat. Most kids will need this done, but not all. In infants it is a relatively easy procedure and the heel cord grows back quickly. Ian's doctor here did it under general anesthesia, but out in Iowa they do it under local.
It was relatively quick but it's not fun to see your child go under and be carried into an operating room.
They told us Ian would have small areas of blood on the heels of the casts afterwards but it would stop bleeding soon. He had the tenotomy in the morning and by dinner that evening they were still bleeding and those small spots were pretty large. Luckily they stopped soon afterwards.
Now, if there is anything less fun than months of comments and stares about your newborn being in full legged casts, it is getting more comments and stares about the BLOOD on those casts.

But what's a mom to do with all that blood? Well, I sat on the floor with my daughters poster paints and painted the back of those things white, that's what I did! LOL (This COULD soften the cast a little, I guess, so I don't recommend it).
Those casts stayed on for a little over a month before we moved on to stage 3.
That's really how we took everything with Ian's feet. We celebrated the end of each stage and moved on to the next one.

A few days old & pic of feet halfway through initial casting period

The first stage

The first stage of the Ponseti method consists of plaster casts from groin to toes. It starts when the baby is a few days old. The feet are slowly manipulated into the correct position. Every week the old casts are removed, the feet are manipulated a little more, and recasted.
Ian's got his first casts when he was 4 days old. I cried like a baby. LOL I'd spent a few days holding him in his favorite position, a curled up ball. But now he had these heavy, clunky, cold damp casts to deal with. I didn't know how to hold him, carry him, or nurse him because I was afraid of hurting him further, but after a few days, we figured it out. In addition, we had to figure out how to protect the casts from diaper blowouts and how to minimize the top edges of the casts from cutting into his skin. We solved those problems mostly by tucking a circle of cotton around the edges and cutting off the tops of a childs pair of socks and tucking it around the edges too.

So what in the world are clubfeet anyway?

That's exactly what we wondered when we heard it! Clubfoot is a very common birth defect, affecting more boys than girls and can run in families. It affects the tendons, ligaments, bones, muscles, and nerves in the feet and legs. If the child has one clubfoot, that foot will usually be a little smaller than the other one. The muscle in the calf will also often be smaller.
In Ian's case, he has severe bilateral clubfeet. At least they will match! It's too early to tell what his calves will look like but since it is due to severity, he will probably have skinny calves. Not a big deal all things considering.
In less developed countries this is one of the most common crippling diseases there are aside from polio. If not treated, the child will walk on the outer edges/top side of the foot. Here is a picture of what untreated clubfoot looks like.

For Ian

We're creating this blog in an attempt to document our son's treatment and progress for clubfeet and provide information on the Ponseti method for other clubfeet families.

Ian was born in Aug. 2003 with severe bilateral clubfeet and has been treated with the Ponseti method both here in Cincinnati and in Iowa City.
We found out during our 20 wk u/s about Ian's feet and we immediately went home and resarched it on the internet. We were thrilled to find out there was a nonsurgical method to treat it and learned a lot from the websites of other parents. Dr. Ponseti, who pioneered the method, works out in Iowa City, still seeing babies and training other doctors.
While most of our treatment was done here in Cincinnati with Dr. Von Stein, who is Ponseti trained, we've also had to go to Iowa because Ian has atypical clubfeet which required a little more help. Thanks to the internet and the websites of clubfeet families, word has spread about this method and more and more doctors are using it.
When used correctly and early, the Ponseti method has up to a 90% rate of success. Those kids who do end up with surgery often need more operations, have large scars, and have stiff, painful feet in the future.