Baby needs a new pair of shoes!

On Monday Om saw Dr. Mosca at Seattle Children's Hospital for a club foot checkup. Dr. Mosca said that Om's feet look great. His left foot is in the top 5% of club feet cases, and the right foot is in the top 1%. Again, it is all based on dorsiflexion, and according to the doc, Om has dorsiflexion very close to a normal foot. The achilles tendon has been growing wonderfully and is flexible.

I love that hospital...the atmosphere, the decor, how organized the system of check - in is (although I end up going through several lines and waiting a lot for a 5 min check up!). I don't mind waiting to a certain point as long as I know why I am waiting.

First the orthotist came and checked Om's feet and measured him for his growth. He determined that Om needed an upgrade to his Denis Brown Bar and Shoes. While we waited for him to adjust the new shoes, Om's weight was checked. After the orthotist put on Om's new shoes, we waited for what seemed like an eternity for Dr. Mosca. Thankfully the rooms and hallway are child friendly with pictures of sea creatures etc to entertain Om. I also took the time to feed Om breakfast and let him play with the paper cover on the patient table. Dr. Mosca almost always has a sidekick with him...whether it be a resident, a nurse, or another physician who is shadowing Dr. Mosca for the day. Dr. Mosca is very knowledgeable about this birth defect. When I ask him a question, he doesn't hesitate to go into a mini lecture explaining the dynamics of a particular problem. I actually like the explaination, because I have the habit of looking things up on the internet/library so why not save some time and have it come straight from the source? :-)

Om will continue to wear the brace 12 hours a day. And we got the okay to keep Om in the shoes for the straight 12 hours and do not need to bother with putting them on during the day. Om is incredibly mobile, and wearing the brace during the day is just annoying for his active legs.

Om munching on a mum-mum while waiting in the room.

Club Feet will ruin your furniture

Om is supposed to wear his Dennis Brown Bar for 12 hours a day. All the parents out there will understand that those hours easily fly by in sleep time. However after reading enough posts about relapse at the nosurgeryforclubfoot group at yahoo groups, we have increased Om's brace time to about 14 hours. So for a baby who sleeps 12 hours EXACTLY this means the extra two hours in the bar are spent in our family room and kitchen area. This wouldn't be a big deal if Om was still the stationary 3 month old. But he's not...as I type he has rolled out of the family room and into the kitchen, and is eyeing the next room (formal living room) as his current destination.

The problem is that when they have a hard metal bar attached to a pair of leather high tops, and they roll and kick in typical baby happiness, things get damaged. For instance, our wooden coffee table is a mess. He has kicked the table legs enough times that I've just ceased to stop him...the table is from G's bachelor days and wasn't in the best shape anyway. I don't want to get a new table because I know Om will just ruin that one too. We will just wait until he outgrows the kicking-things-with-his-bar phase (whenever that may be).

Om also manages to roll into the speakers of our new sound system. THAT is annoying, because they are expensive and probably can't bear the brunt of being smashed. Also, the microfiber and leather sofa has lots of baby scratches too. The bottom leather portion of the sofa is a prime area for getting scratched by the brace, and Om uses his finger nails to scratch the leather. The microfiber cusions were a great idea, however...spit up and food get cleaned up easily.

Oh and I can't forget the hardwood floor in the kitchen...Om loves new textures, and when he lands on tile or hardwood floor he likes to test out the area by kicking his braced legs HARD. I just hope when we leave this rental house that he hasn't caused too much damage, I feel bad for the landlord!

So here are some questions from a newbie Mom to all the experienced folks...besides surrounding Om with cushions and blocking areas, what can be done to soften the blow of the brace? And what can we do about saving the carpet from baby stains?

Happy Feet

The jumperoo never looked so GOOD.

The wooden tables and floor are saved.

No more questioning stares from people in public.

Today Om had his follow-up appointment at Children's Hospital in Seattle. First the orthotics team took a look at Om's feet. They were very pleased! Then Dr. Mosca checked his feet and reduced the hours Om has to wear brace. I can't tell you how amazing that is...now Om can be a normal baby for 12 hours of the day! The orthotist said that in his many years of practice he has not seen such improvement in club feet! The dorsiflexion is great, with a 40 degree angle, which is what NORMAL babies have! Usually club foot babies do not achieve that degree of flexibility.

Either Om is just lucky, or the constant massages, stretching, and bi-weekly visits to a physical therapist are really working.

Om got a new pair of Markel shoes one size up, but the bar is the same size and will be changed in another 3 months. Markell shoes are stiff and leathery and require some breaking in to adjust to the child's feet. I asked the orthotics folks if we could get the Mitchell shoes and bar, but they recommended against it, stating that why change something that is working so well. Also, according to the orthotist Mitchell shoes are geared more towards babies who have problems (constant blisters, feet slipping out of shoes, etc). He said that the Markell shoes are stiffer for a reason - they really work when used properly and if there are no slippage problems, the chances for success are greater. So I did not press the issue, because anyway now we only have to put the shoes on Om when he sleeps.

I just pray and hope that he doesn't relapse. You never know with club foot. Nazar nah lage (Antijinx on this post! Jinx monstor be gone!)

Magic Shoes

"Momma said they was my magic shoes, they'd take me anywhere"

--Forrest Gump

One Good Thing

Is there ANY positive aspect to your baby having a bar lodged between his stiff leathery shoes 23/7?

The diaper changes. It is SO much easier to hold both feet together when we wipe his little tush. Just grab the bar and lift!

It's a serious birth defect folks!

Before Om, I had no idea what it meant to have club feet. To me, all foot and leg braces were the same. Now I realize that there are so many variations in the type of lower extremity birth defects. Some are more severe than others, and some are accompanied by other birth defects in different parts of the body. Each type of defect has a specified type of treatment which may or may not include a brace/special shoes.

Club feet is just one category of lower extremity birth defect. Within club feet there are variations in severity and also in what caused the condition. For instance, children can be born with bilateral or unilateral clubbed feet, with severe, moderate, or mild severity. There are also atypical club feet which are very difficult to treat. Om has bilateral club feet with moderate severity. The docs said it is an isolated (no other issues in Om) genetic problem. There was nothing we could do or could have done better (such as changing the diet etc). Om wasn't "cramped" inside me (he had plenty of room to kick the bejeezus out of his Mom).

Thus, I understand when people who hear about club feet for the first time say things like "Oh don't worry my cousin's friend's brother had this and he just wore special sandals and is totally fine now." How do they know it was club feet and not some other milder deformity that was easily fixed with special sandals? They don't, yet they are trying to be supportive and give us hope. So I listen. :-)

I also listened when my parents said that Om would "miracously" be healed in the womb due to prayer. They were convinced that club feet could be healed via intense prayer and that when Om was born we'd have a pleasant surprise. I knew in my heart that this would not be the case (I trust science too much) but I let them pray for my baby. They were just worried for their grandchild.

I listened when my mother in law conducted a puja (prayer) ceremony in her house in India and had a priest pray for the baby for several weeks after. Although I didn' t like the idea of the money spent, I didn't mind since she was just trying what she knew best.

What I don't listen to are when people say things like:

• "You didn't get enough vitamins. You should have eaten (insert random food here) so that your baby would have normal feet."
• "You didn't sleep in the correct position."
• "Malnutrition causes this."
• "You must have bent in an unusual position thus the baby's feet twisted inward."
• "You should have prayed more during the pregnancy."

(These comments are actually quite entertaining at times. I can't wait to see what comments we get when we take Om to India for the first time in March).

Club Foot Gene Found

This is fascinating. Neither G nor I know of anyone on either side of our families that has club feet. However, the physician told us (at the 5 month ultrasound) that our case was most likely genetic.

Gene Plays Key Role in Clubfoot
Finding could lead to tests, therapies, experts say
-- Robert Preidt

MONDAY, Oct. 27 (HealthDay News) -- The first gene linked to clubfoot has been identified by researchers at the Washington University School of Medicine in St. Louis, who analyzed the DNA of 35 extended family members of a male infant with clubfoot.

Through their analysis, the study authors concluded that a mutation in a gene called PITX1 -- which is critical for early development of lower limbs -- was responsible for the condition. The mutation was found in all 13 affected family members and in three carriers who showed no clinical symptoms.

Other genes may also play a role in clubfoot, but this finding is an initial step toward improved genetic counseling and the development of new therapies, the researchers said. The study appears in the Nov. 7 issue of the American Journal of Human Genetics.

"To our knowledge this report is the first evidence for PITX1 mutation in human disease," Dr. Christina Gurnett, an assistant professor of neurology, of pediatrics and of orthopedic surgery, said in a university news release. "Once we identified the mutation, we proved that all of the individuals in this family with lower extremity malformations also have the mutation. Having large families to work with is very helpful in genetic research."

Clubfoot, which affects about one in 1,000 newborns, is "a complex disorder meaning that more than one gene as well as environmental factors will be discovered to play a role in its [cause]," study senior author and clubfoot specialist Dr. Matthew Dobbs, an associate professor of orthopedic surgery, said in the news release.

In about 80 percent of clubfoot cases, the cause is unknown, while a familial link plays a role in about 25 percent of cases, according to background information about the study. Males are twice as likely as females to have clubfoot, which occurs more often in the right foot. About half of cases affect both feet.

Club Feet - Goodbye Casts, Hello Brace

Last Sunday was the chipmunk's (AKA Om) last day with the correcting casts. In this picture the casts are pretty dusty after 3 weeks of wear. I couldn't resist adding a few doodles to the casts.

My little surfer/snowboarder! In the above pic, the casts have been removed. He is wearing a brace (Dennis Brown Bar) that consists of corrective shoes and a metal bar to hold his feet in place. We have to keep the brace on Om 23 hours a day. The extra hour gets divided throughout the day for a bath and stretching of his feet (special stretches that the orthotics folks taught to us) These shoes are not easy to put back on once we've taken them off. They are leathery and stiff, and Om cries each time we squish his feet into them. The bar is heavy so Om needs to re-learn how to kick up his legs.

If we don't follow the prescribed treatment there is a good chance his feet will relapse into the clubbed position. We take Om back for a checkup in 3 months. I'm hoping the doctor will determine his feet are satisfactorily stable such that we can limit the brace to only nighttime. That will be a huge relief from taking off and putting on the brace during the day.

When I hold Om without his brace, I think to myself "This is what it feels like to have a normal baby." Sigh.

Tenotomy

2 weeks ago Om had his achilles tendon on both feet snipped. The casts will remain on until end of October, and then he'll be fitted for special brace-like shoes. I can't wait to be done with the whole mess of casts. First, I hate going weekly to the doctor's office...second I hate not being able to feel his legs when he's in my arms, and third I miss giving him daily baths (casts can't get wet).

The mini-surgery went well, they first numbed his feet with a topical cream (he cried bloody murder while the nurse was manipulating his feet) and then Dr. Mosca (along with 2 doctors observing) cut the tendon quickly with a scalpal and then injected anesthesia into the incision. Then Om was re-casted. We gave him Tyenol with codeine for 24 hours to help with any pain. It was funny to see him react to the medication...he would drift off into la la land somewhere between sleep and awake...We had a very high baby during that day! :-)

Famous People born with Club Feet

Olympic goldmedal iceskating champions, football and baseball stars...

(From Wikipedia):

Many notable people have been born with club foot, including the Roman emperor Claudius, the poet Lord Byron, statesman Prince Talleyrand, Civil War politician Thaddeus Stevens, the comedian Damon Wayans, actors Gary Burghoff and Dudley Moore, footballer Steven Gerrard, mathematician Ben Greenberg, and film director David Lynch.[citation needed]
Kristi Yamaguchi was born with a club foot, and went on to win figure skating gold in 1992. Soccer star Mia Hamm was born with the condition. Baseball pitcher Larry Sherry was born with club feet, as was pitcher Jim Mecir, and both enjoyed long and successful careers. Pittsburgh Pirates infielder Freddy Sanchez cites his ability to overcome the defect as a reason for his success [7]. Dallas Cowboys quarterback Troy Aikman also overcame the condition en route to a Pro Football Hall of Fame career. Josef Goebbels, the notorious Nazi propaganda minister, had a right club foot (possibly incurred after birth as a complication of osteomyelitis)[8], a fact hidden from the German public by censorship. Because of this malformation, Goebbels needed to wear a leg brace. That, plus his short stature, led to his rejection for military service in World War I.

Club Feet Updates

Today was Om's 5th casting in a series. We go every Monday to Children's Hospital in Seattle to see Dr. Vincent Mosca, one of the top orthopedic physicians in the area. Folks come from far and wide to see this doctor...I spoke to one lady last week who was there with her infant son and had to catch a flight back home afterwards. Imagine doing that weekly! Sheesh what we do for our kids. We are so blessed that we live fairly close to the hospital.

Om keeps the cast on all week long, then Monday morning G removes the casts from Om's legs. Om doesn't like getting the casts taken off so is a bit fussy during the process. Grandma (my mom in law) gets all wet in the bathtub with him for his weekly bath (we wash him daily with a washcloth because the casts can't get wet or soiled). He also gets an oil massage from grandma. I dry Om and dress him after his bath.

In the above pic, Om's feet are clearly turned inward. This is before the casting series.

In this pic, Om was getting his first casts applied by Dr. Mosca. (He's content in sucking the bottle in this pic, which is not always the case!)

Above Om is getting his casts removed by his Dad. Again, he's quiet, but usually he hates when his casts come off (probably feels funny to the little guy!).

Here's Om before today's visit to the hospital. You can see the difference between this picture and the first one...his feet aren't as twisted anymore.

His feet are still odd looking, but MUCH more normal than 5 weeks ago! All the extra folds of skin are a good sign...it means the foot is changing to a normal shape and he will eventually grow into the extra skin.

Next week a procedure called a tentotomy will be performed on both of his feet. His achilles tendons will be snipped and then a new cast applied to last 3 more weeks. Fingers are crossed that Om suffers through it like the brave trooper he has been...and that all this work eventually leads to healthy normal chubby cute feet! Please keep us in your prayers / positive thoughts!

Club Foot Schedule of Events

So after our little bundle of joy is done cooking, here is the schedule of appointments and surgeries that will take up our lives for the next 4 years:

1 week after birth: Initial orthopedic appointment to get fiber optic casts put on both feet and legs (upto the groin).

Once a week for 4 weeks following: Cast removal and change of cast.

Week 5: Remove casts and have surgeon determine whether baby falls into one of three categories:

• 5 % at this stage are CURED, no more casts etc.


• 5 % at this stage have no difference in the feet, massive surgery necessary.


• 90 % (most likely for our kiddo) the collagen has changed but the achilles tendon is still in the clubbed feet position thus making it tough for him to turn his feet upwards (necessary for walking). Will require cutting of the achilles tendon, then 3 months of a cast while waiting for new achilles tendon to grow.

Month 5: Cast for achilles tendon removed, shoe and bar braces are introduced. For 3 months baby will wear the braces for 23 hours out of the day.

Month 8: Brace time is reduced to only during sleep and naptime. This continues until about age 4 with regular checkups to see progress of collagen and achilles tendon.

Year 4: Braces are removed and babies feet are totally normal, can't tell difference b/w them and a non-club footed 4 year old.