Clubfoot hand book for all the new people

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Clubfoot Handbook

For Parents

NOTICE: The information presented is for your information only, and not a

substitute for the medical advice of a qualified physician.

By Pearl Kingsley

I am often asked to describe the experience of raising a child with a

disability - to try to help people who have not shared that unique

experience to understand it, to imagine how it would feel. It's like this:

When you are going to have a baby, it's like planning a fabulous vacation

trip to Italy. You buy a bunch of guidebooks and make your wonderful plans.

The Coliseum. The Michelangelo . The gondolas in Venice. You may learn

some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your

bags and off you go. Several hours later the plane lands. The stewardess

comes in and says, " Welcome to Holland. "

" Holland?! " you say. " What do you mean Holland?? I signed up for Italy! I'm

supposed to be in Italy. All my life I've dreamed of going to Italy. " But

there has been a change in the flight plan. They've landed in Holland and

there you must stay.

The important thing is that they haven't taken you to a horrible,

disgusting, filthy place, full of pestilence, famine, and disease. It's just

a different place.

So you must go out and buy new guide books. And you must learn a whole new

language. And you will meet a new group of people you would have never met.

It's just a different place. It's slower paced than Italy, less flashy than

Italy. But after you've been there awhile and you catch your breath, you

look around ... and you begin to notice that Holland has windmills ... and

Holland has tulips. Holland even has Rembrants.

But everyone you know is busy coming and going from Italy ... and they are

all bragging about what a wonderful time they had there. And for the rest of

your life, you will say " Yes, that's where I was supposed to go. That's what

I had planned. "

And the pain of that will never, ever, ever, ever go away...because the loss

of that dream is a very, very significant loss.

But ... if you spent your life mourning the fact that you didn't get to

Italy, you may never be free to enjoy the very special, the very lovely

things ... about Holland.

BM__Toc40164620Introduction

What do Olympic gold medalist figure skater Kristi Yamaguchi, Super Bowl

Champion All-Pro quarterback Troy Aikman, actor-writer-musician-composer

Dudley , Hall of Fame sports announcer Pat Sumerall, romantic poet Lord

Byron, comedian-actor-writer-director Damon Wayans, British King

III, Heisman trophy winner Woodson, and Olympic gold medalist

pioneering women's soccer star Mia Hamm all have in common? You've already

guessed. They were all born with clubfeet!

The medical term for clubfoot is Congenital Talipes Equinovarus. Congenital

means a deformity that is present at birth. Talipes refers to the foot and

Equinovarus means the position of the foot, which points downwards and

inwards. Clubfoot can involve one foot (unilateral) or both feet

(bilateral). The affected foot tends to be smaller than normal and can be

shortened by up to 1 cm as compared to the normal side. In addition, some

children with clubfoot have stiffness (i.e. lack of mobility in some of the

joints of the foot) and small calf muscles.

With adequate treatment, it is very likely that the deformity can be

corrected and that your child will be able to walk well on the affected

foot. Some elements of the deformity, however, may never go away. this

includes the smallness of the foot, the small calf muscles, and the

shortening of certain tendon. These rarely change a child's overall

functional ability.

Parents of infants born with clubfeet may be reassured that their baby, if

otherwise normal, when treated by expert hands will have normal looking feet

with normal function for all practical purposes. The well-treated clubfoot

is no handicap and is fully compatible with a normal, active life.

BM__Toc40150022BM__Toc40164621What Causes Clubfoot?

Anyone can be born with clubfoot. Approximately 1 in 1000 people are born

with clubfoot. In half of the cases, both feet are affected. When this

happens, one foot is usually affected more than the other. It can run in

families and is slightly more common in boys. Most children born with

clubfoot have no other congenital problems, but sometimes clubfoot occurs in

association with other abnormalities or syndromes. Clubfoot has been known

about for many years and occurs worldwide, however very little is known

about the cause. In rare instances a child born with myelomeningocele (spina

bifida) or arthrogryposis may also have clubfeet. Beyond these observations,

no actual cause is known. If your child has clubfoot, it is usually not due

to anything you did or did not do during pregnancy.

The condition can be detected pre-natally by ultrasound scan, but is often

not discovered until birth. Clubfoot can be recognized in the infant by

examination. The foot is inturned, stiff and cannot be brought to a normal

position. Children with the condition should be referred to an orthopedic

surgeon for complete evaluation and treatment of the deformity.

During development, the posterior and medial tendons and ligaments (in the

back and inside) of the foot fail to keep pace with the development of the

rest of the foot. As a result, these tendons and ligaments tether the

posterior and medial parts of the foot down, causing the foot to point

downwards and the twist inwards. The bones of the feet are therefore held in

that abnormal position. Over time, if uncorrected, the bones will become

mis-shapened.

There are three main types of defects:

Equinovarus - This is the most severe type. The foot is twisted inward and

downward so that the child cannot place the sole flat on the ground but must

walk on the ball, the side, or even the top of the foot.

Calcaneus valgus - In this moderately severe form, the foot is angled upward

and outward so that the child has to walk on the heel or the inner side of

the foot.

Metatarsus varus or adductus - The mildest form of defect does not involve

the ankle but only the bones and connective tissues of the foot, causing the

front part to turn inward.

BM__Toc40150023BM__Toc40164622Treatment Options

Treatment should be commenced soon after birth, and the aim is to achieve

functional, pain free feet. The treatment of clubfoot is rather involved,

and best managed by Orthopedic surgeons experienced in the techniques

mentioned below.

BM__Toc40164623Physiotherapy

This is rarely used by itself, but can be useful for very mild cases. The

aim is to stretch the ligaments and tendons into the correct position. You

may be taught the technique to continue at home.

BM__Toc40164624Strapping

Strips of adhesive strapping are passed around the foot, up the sides of the

leg, and over the top of the knee, to hold the foot in a corrected position.

This is usually done weekly, following some physiotherapy. Again, this can

be useful for fairly mild cases, as it is generally ineffective after about

3 months. By this time the kicks are so strong that the strapping stretches

very quickly, and is also liable to come off.

BM__Toc40164625Traditional Casting

It is very important to treat clubfoot and do so as early as possible (i.e.

shortly after birth) to prevent disability and problems with walking when

the child gets older. Clubfoot can be treated so that the deformity is

corrected and normal function, for the most part, is restored. The first

step in management is taping or casting of the foot. The physician holds the

foot in the proper position and then puts tape or cast on to hold it in

place. One-third of feet, usually the ones more mildly affected, will

respond to this therapy. During the immediate postnatal period, the cast or

tapings are changed every day.

Thereafter, your child will be seen frequently by the pediatric orthopedic

surgeon: every one to two weeks. Initial treatment is provided by a series

of casts to the affected foot (feet). Infants are placed in casts covering

the entire limb(s). The severity of your child's deformity will determine

the number of casts required. In more severe cases, your child may also

require tendon lengthening or surgical correction. Most daily activities are

not hampered by cast wear. Bathing is one exception. Your baby will, in most

cases, not be able to be dipped into water. The casts will need to be kept

dry. Diaper changing is not altered. After multiple serial castings are

completed (2-3 months), special shoes with or without a bar may be needed.

BM__Toc40164626Ponseti Method

The majority of clubfeet can be corrected in infancy in about six to eight

weeks with the proper gentle manipulations and plaster casts. The treatment

is based on a sound understanding of the functional anatomy of the foot and

of the biological response of muscles, ligaments and bone to corrective

position changes gradually obtained by manipulation and casting.

Less than 5% of infants born with clubfeet may have very severe, short,

plump feet with stiff ligaments, unyielding to stretching. These babies may

need surgical correction. The results are better if bone and joint surgery

can be avoided altogether. Surgery in the clubfoot is invariably followed by

scarring, stiffness and muscle weakness which becomes more severe and

disabling after adolescence.

The treatment should begin in the first week or two of life in order to take

advantage of the favorable elasticity of the tissues forming the ligaments

joint capsules and tendons. With our treatment these structures are

stretched with weekly, gentle manipulations. A plaster cast is applied after

each weekly session to retain the degree of correction obtained and to

soften the ligaments. Thereby, the displaced bones are gradually brought

into the correct alignment.

Five to seven plaster casts extending from the toes to the upper thigh with

the knees at right angle should be sufficient to correct the clubfoot

deformity. Even the very stiff feet require no more than 8 or 9 plaster

casts to obtain maximum correction. Before applying the last plaster cast

which is to be worn for three weeks, the Achilles tendon is often cut in an

office procedure to complete the correction of the foot. By the time the

cast is removed the tendon has regenerated to a proper length. After two

months of treatment the foot should appear overcorrected.

Following correction the clubfoot deformity tends to relapse. To prevent

relapses, when the last plaster cast is removed a splint (FAB) must be worn

full-time for two to three months and thereafter at night for 2 to 4 years.

The splint consists of a bar (the length of which is the distance between

the baby's shoulders) with high top open-toed shoes attached at the ends of

the bar in about 70 degrees of external rotation. The baby may feel

uncomfortable at first when trying to alternatively kick the legs. However,

the baby soon learns to kick both legs simultaneously and feels comfortable.

In children with only one clubfoot, the shoe for the normal foot is fixed on

the bar in 40 degrees of external rotation.

Since the surgeon can feel with his fingers the position of the bones and

the degree of correction, X-rays of the feet are not necessary except in

complex cases.

When the deformity relapses in spite of proper splinting a simple operation

may be needed when the child is over two years of age. The operation

consists in transferring the anterior tibial tendon to the third cuneiform.

Poor results of cast and manipulative treatments of clubfeet in many clinics

indicate that the attempts at correction have been inadequate because the

techniques used are flawed. Without a thorough understanding of the anatomy

and kinematics of the normal foot and of the deviation of the bones in the

clubfoot, the deformity is difficult to correct. Poorly conducted

manipulations and casting will further compound the clubfoot deformity

rather than correct it making treatment difficult or impossible.

Surgeons with limited experience in the treatment of clubfoot should not

attempt to correct the deformity. They may succeed in correcting mild

clubfeet, but the severe cases require experienced hands. Referral to a

center with expertise in the non-surgical correction of clubfoot should be

sought before considering surgery.

More information regarding the Ponseti Method can be found on Dr. Ponseti's

website:

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html>

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

BM__Toc40164627Splinting

Splinting can be used at various times of your child's treatment, and are

often used as a follow-up after serial casting, or after casts applied at

surgery. Splints are either the denis browne type where the feet and lower

leg are splinted, and then attached to a bar which can be adjusted gently

daily, until eventually the feet are in the correct position, or Ankle-foot

orthoses (AFO's), which are a light-weight, plastic splint held on by

velcro. These can be worn 24 hours a day, or at night only. They can be

removed easily for bathing. Shoes that may be used after splints are

straight last shoes where the medial border is straight.

BM__Toc40164628French Physio Method

French technique consists of daily visits with the physical therapist.

Gentle, painless stretching of the foot is performed. The foot is then taped

to maintain the improved position and is held this way until just before the

next day's visit. At night, the taped foot is placed into a continuous

passive motion machine at home in order to maximize the amount of

stretching. This is tolerated well by the infants. The tape is removed for

two hours each day to allow for bathing, airing of the skin, and home

exercises. Removable aquaplast splints are also used to reinforce the taped

position. The one-hour physical therapy sessions are conducted five days

each week for as long as three months (in very stiff feet). Taping is

discontinued when the child starts to walk.

BM__Toc40164629Surgery

If cast treatment fails, surgery may be necessary. This is not performed

until the child is between four and eight months of age. The Pediatric

Orthopaedic Surgeon lengthens several of the tendons (structures which

connect muscle to bone) which allows to foot to adopt a normal position.

One of the most common operative procedures is a 'soft tissue release',

carried out to correct the short tendons and ligaments which pull the foot

out of position. It involves lengthening the Achilles tendon, as well as any

other involved ligaments.

The usual routine is to then plaster the foot for 2 weeks, but only in a

semi-corrected position. This allows the wound to heal, without putting

stress on the stitches. After 2 weeks the stitches are removed, and the foot

is once again put in plaster - this time in a fully corrected position.

This plaster is usually kept on for around 6 weeks, after which time the

foot is reviewed. If the foot is not fully corrected, the plaster may be

reapplied, or a splint may be used.

The timing of the surgery will vary, according to your surgeon. Some will

operate on very young babies, but most surgeons feel that this is not very

effective, and that there is also a risk of 'over-correcting'.

The majority seem to like to operate at around 9 months, with the belief

that when the casts come off the child should be ready to start walking on

the foot, and this can help maintain the correction. However, there are some

surgeons that feel that surgery should be carried out as late as possible.

BM__Toc40164630Retention and Follow-up

Whether correction is accomplished by casting or by operative therapy,

splinting at night may be used to prevent a recurrence of the deformity.

Corrective shoes have little benefit in preventing recurrence and thus

normal shoes are allowed during the day. Exercises too are insufficient as

the only treatment for recurrence, but some believe that stretching may be

of some benefit.

Children need regular follow-up for several years after treatment (casting

or surgery) to make sure that the clubfoot does not come back. The

idiopathic type (i.e. the cause is unknown) clubfoot can come back up to

about six or seven years of age. Most, however, if they do return will do so

within several years of treatment. Repeat casting or further surgery can be

performed.

BM__Toc40164632Tips & Tricks

SOAKING PLASTER CASTS OFF:

* Soak baby's cast in a tubful of warm water and a little vinegar or

lemon juice until softened, then peel away,

* Put warm wet facecloths or towels over the casts and cover with a

Ziploc or bread bag. Plan baby's favorite activities: give milk/formula,

baby swing, anything to keep happy while casts are softening. After an hour,

casts should be able to be pealed right off.

* Fill a small bulb syringe with warm water and syringe the water

inside the cast to soak it off from the inside. Do this for about ½ hour,

then 10 minutes in the tub should get the casts off.

KEEPING CASTS CLEAN:

* Keep cast clean and dry. If it gets dirty, clean it with a damp

cloth. Wipe off extra moisture and allow the cast to air dry. (9)

* Be sure to put a sock over the cast to keep it clean and to keep

your baby's toes warm. Try using adult or toddler socks to fit over the

casts. You can cut them down or just roll them down to fit.

CHECK BABY'S FEET REGULARLY:

Check your baby's toes several times a day. They should be pink and warm.

Call your doctor if:

* the toes are swollen.

* the toes are white or purple

* the skin near the edges of the cast is red or scratched

* the cast is too tight

* the cast is cracked

* the cast gets wet

* you notice a bad smell coming from inside the cast

HOW TO DRESS BABY:

During casting any type of pants with wide legs is, of course, going to work

better for you. Sweats are wonderful, however most clothing works fine over

casts.

Stock up on clothing with snaps in the crotch for time in the FAB. If

you're handy at the sewing machine, you can open up the seams and perhaps

add snaps.

BM__Toc40150025Helpful Links

Dr Ponseti's site:

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html>

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

http://www.global-help.org/publications/ponseti-cf.html>

http://www.global-help.org/publications/ponseti-cf.html

A list of multiple links for Ponseti Method:

http://pages.ivillage.com/ponseti_links/>

http://pages.ivillage.com/ponseti_links/

A list of multiple links for clubfeet:

http://www.internet-health-directory.com/Conditions_and_Diseases_Musculoske

letal_Disorders_Congenital_Anomalies_Clubfoot.html>

http://www.internet-health-directory.com/Conditions_and_Diseases_Musculoskel

etal_Disorders_Congenital_Anomalies_Clubfoot.html

Clubfoot info:

http://www.xprss.com/clubfoot/welcome.asp>

http://www.xprss.com/clubfoot/welcome.asp

Brace:

http://www.mdorthopaedics.org/default.html>

http://www.mdorthopaedics.org/default.html

Markell shoes:

http://www.markellshoe.com/> http://www.markellshoe.com

Plantaris feet:

http://adifferentfoot.freeservers.com/>

http://adifferentfoot.freeservers.com/

No-surgery board

http://health.groups.yahoo.com/group/nosurgery4clubfoot>

http://health.groups.yahoo.com/group/nosurgery4clubfoot

Photo group

http://health.groups.yahoo.com/group/CFPics/>

http://health.groups.yahoo.com/group/CFPics/

Clubfoot Exchange

http://health.groups.yahoo.com/group/TheClubfootSwap/>

http://health.groups.yahoo.com/group/TheClubfootSwap/

Hints and Tips:

http://ponseticlubfoot.freeservers.com/hints.html>

http://ponseticlubfoot.freeservers.com/hints.html

Foundations:

http://www.pediatric-orthopedic-foundation.org/>

http://www.pediatric-orthopedic-foundation.org/

Mc house IC

http://www.uihealthcare.com/depts/ronaldmcdonald/index.html>

http://www.uihealthcare.com/depts/ronaldmcdonald/index.html

NOTICE: The information presented is for your information only, and not a

substitute for the medical advice of a qualified physician.

BM__Toc40150026BM__Toc40164634References

http://www.clubfoot.co.uk/> www.clubfoot.co.uk

http://www.drgreene.com/21_1048.html> http://www.drgreene.com/21_1048.html

http://www.scoi.com/clubfoot.htm> http://www.scoi.com/clubfoot.htm

http://www.orthoseek.com/articles/clubfoot.html>

http://www.orthoseek.com/articles/clubfoot.html

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html>

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html

http://www.hopkinsmedicine.org/orthopedicsurgery/peds/clubfoot.html>

http://www.hopkinsmedicine.org/orthopedicsurgery/peds/clubfoot.html

http://webhome.idirect.com/~kathrynh/clubfoot.html>

http://webhome.idirect.com/~kathrynh/clubfoot.html

http://xprss.com/clubfoot/default.asp

http://xprss.com/clubfoot/default.asp>