- Disabilities & the Disabled
Club feet – thanks to medical science clubfeet is not a curse!
The fact that I was born with clubfeet never affected me in any way. Thanks to medical science my feet were straightened while I was a baby. I grew up with only the knowledge that crawling on my knees or walking on my ankles would have been my lot in life if I was born in a previous century.
But let me be honest – to say it never affected me in any way is a lie. Of course it did. It kept me humble and grateful and able to appreciate many things I would have taken for granted if I was born with normal feet.
I undertook to write about my own case after Judicastro mentioned that a friend of her is expecting a baby and the doctor suspects he will be born with clubfeet. One of my fears was that my children will be born with it, and my first question after they were born was in fact: "Are the feet normal?" God knows why I was so worried about this, because it is one of many deformities that can be expeditiously corrected.
Before I tell my story, just a brief summery of the congenital deformity called clubfeet, clubfoot, club feet, club foot.
The medical term for clubfeet is ‘Congenital talipes equinovarus (CTEV). ‘Talipes equinovarus’ is a Latin word. Talus = ankle, pes = foot, equino = of/like a horse, varus – turned inward. A baby could be born with unilateral (one) clubbed foot, or bilateral (both feet). Two groups of CTEV has been identified - Postural TEV or Structural TEV, which compels persons to walk on their ankles or on the sides of their feet.
In Western countries one in every one-thousand babies is born with one or two clubbed feet. In South African blacks it occurs three times as frequently and six times as frequently in Polynesians. In all cases approximately fifty percent are males.
Clubfeet is not an embryonic malformation, but a developmental deformation. The foot, or both feet, turns into clubfeet during the second trimester of pregnancy.
Treatment of clubfeet
Manipulation will be the first attempt to correct the deformity. It means gradually stretching tendons, then casting and bracing the feet until it is in the correct position. Treatment starts immediately after birth. The doctor changes the cast approximately every third week to do the next stage of stretching, casting and/or bracing. This treatment is known as the Ponseti Method, introduced by Dr. Ignacio Ponseti in the 1950’s. (Some sources allege 1940’s). In the meanwhile this method was improved and applied today with a success rate of 95%.
23 videos demonstrating the Ponseti Method is obtainable at http://talipestogether.com/video?sort=highestRated or Watch a Video on the Ponseti Method
There are also other treatments supporting the Ponsetti Method, like Botox (Botulinum Toxin type A), which is a chemical that acts on the nerves that control the muscle. It weakens the Achilles tendon which allows the foot to be turned into a normal position.
In some cases, such as mine, tendons, ligaments and joints in the foot/ankle have to be adjusted with surgery. After surgery, casts have to hold the feet still while it heals over a period of approximately six weeks. Thereafter special shoes, or braces or any of many external fixtures have to be used for up to a year or more.
are divided in categories: positional, congenital, teratologic, neurogenic or syndromic.
Some syndromes are:
Edwards syndrome, also called Trisomy 18 – meaning a person has three copies, or two plus a part of a third, of chromosome 18 instead of only two. After Down syndrome this defect is the second most common autosomal trisomy.
Compartment syndrome – the compression of nerves, blood vessels and muscles inside a specific closed space.
- Some say Breech presentation could also be a cause, but my logic mind refuse to agree with them.
Ehlers–Danlos syndrome may be the cause – which is a group of inherited connective tissue disorders caused by a defect in the synthesis of collagen. Collagen is the protein that helps tissues to resist deformation.
- Spina bifida cystica could be a cause, which is a defect caused by the incomplete closing of the embryonic neural tube. This is a cause easy to diagnosed, because the spina bifida has to be surgically closed after birth.
Some cases in my family –
We have three cases of Oral-facial-digital syndrome, which affect the development of the oral cavity (the mouth and teeth), facial features, and digits (fingers and toes). The OFD1 gene is to blame for this defect - a gene providing instructions for making a protein whose function is not fully understood, but it appears to play an essential role in the development of many parts of the body, including the brain, face, limbs, and kidneys.
Members of my family born with a defect OFD1. (I include myself because it seems so obvious that this gene may also be the baddy in my case).
- My mother’s paternal grandfather was born with a cleft palate.
- My mother’s brother was born with his middle finger attached to his ring finger (of both hands.)
- I was born with clubfeet.
- My brother’s daughter was born with extra tissue like warts to her gums.
My uncle was, and still is, an accomplished musician on many music instruments. Although his fingers were separated when he was about six years old, those fingers always stay together while he plays the piano, as if the brain recognize them as one and not two separate fingers.
My brother’s daughter is a beautiful and highly intelligent young lady with only pictures proving that she was born with warts on her gums.
Alarming is the fact that genetic influences increase dramatically with family history!
My personal story –
Five days before my father turned twenty-two, and four weeks before my mother turned nineteen, I was born. Their first child. With clubfeet.
I can clearly visualize the horrible shock they had to deal with. “Why us? What did we do wrong? What sins we or our fathers or our grandfathers or great-grandfathers committed that justify this kind of punishment?” They were dedicated Christians and their minds were set in the common believes of their time. My mother blamed herself, because she was often a passenger on my father’s Harley Davidson motorbike.
They were reluctant to allow doctors to correct ‘the work of God’. I don’t know who enlightened their thoughts. Perhaps my grandmother. She and my grandfather also refused to give permission for the separation of their son’s fingers, but when he went to school at the age of five and proved that he was unable to write because he could not hold a pen, they conceded that deformities could be the direct interference of Satan in God’s perfect work and that was exactly the reason why God allows medical science to develop. (Is it not interesting, the ability of Christians to justify all their decisions by merely applying the most relevant scriptures?)
It could have been their son’s teacher who enlightened their thoughts, or perhaps it was my grandfather’s father who was born with a cleft palate. I have no idea how he managed to eat, speak normally – as he did, according to my mother - and even distinguishes himself as an accomplished vocalist with a cleft in his palate. Although the history of surgery of cleft lip and palates reaches as far back as 390 B.C., when a cleft lip was closed successfully in China, a successful operation in the Western world did not, according to Wikipedia, occur until 1816 when chloroform was introduced. However, as far as I know cleft palates were not rectified via surgery in South-Africa in the time of my great-grandfather. He must have kept the cleft closed with some kind of a gadget.
Anyway, my parents finally made a decision that drastically changed my destiny and so I was delivered to specialists in the terra firma of medical science. I will forever be grateful to them, because without any treatment, a child's clubfeet result in severe functional disability.
The Ponseti Method, introduced by Dr. Ignacio Ponseti in the same decade I was born, was exercised on me. The treatment lasted for ten months before they finally realized the tendons, ligaments and joints in my ankles and feet have to be adjusted with surgery. The operation was a success. I was, however, almost two years old before I was able to walk. I still have, somewhere in my house, my first pair of special boots that supported my feet and ankles, and I also have one of the larger pairs I had to wear during my growing-up years - ordinary shoes built up at the sides which forced me to walk on the entire foot and not only on the outer halve.
At the age of thirteen final adjustments had to be done to the tendons and ligaments in my ankles and toes, and the bridges of my feet had to be lowered. This was also successfully done.
How did this affect my personality?
Naturally I cannot remember the pain and discomfort I must have suffered when I was a baby. I only know what my parents told me.
During the day or three when they allowed my feet to rest before the next treatment, I yelled hysterically when I saw my feet moving in front of me. The muscles in my legs were undeveloped because my legs were most of the time in heavy plaster casts, I could not control my feet, they were unknown, weightless objects flying in front of my eyes. I could not grap them with my hands, due to undeveloped coordination between brain, hands and feet. My mother had to calm me down with pillows on my legs. Until today, particularly during times of distress, I need weight on my legs to fall asleep.
It took three nurses to hold me down every time the doctor had to remove a set of casts. The sound of the cast saw frightened me out of my baby mind. Because of my resistance I was on numerous occasions injured by the saw. I never outgrew the fear of noises representing cast saws. When they removed the plasters after follow-up surgery when I was thirteen, I shocked the doctor, two nurses and my mother with an anxiety attack they confused promptly with an epileptic seizure. Until today anxiety overpower me when I hear a sawing noise.
While I was a baby pain made me cry a lot. My mother was afraid I might get addicted to the medicine, therefore she withheld pain killers and encouraged me to bear pain as long as I could. My father made me lie on his chess while he read a book or newspaper aloud. He encouraged me to 'talk to him', and so I moaned and muttered myself often to sleep. That my own voice comforts me, was something I must have learned during that time and that is probably why I've grown into a chatterbox, talking the hind leg off a donkey whenever the opportunity presents itself. “Martie talks too much, therefore she forfeits her chances to be the best achiever in her class,” was a teacher’s comment in one of my school reports.
Until about ten years ago I was not at all able to handle silences. If nobody talked, I woud kill the silence with my own voice, talking-talking-talking. My friends did not mind – they hung on my lips and assured me that they enjoy listening to me. I was regarded as clever, witty and interesting. The fact that my parents often begged me to stop bombarding them with questions and my interpretations of whatever I see and to give their poor ears some rest, did not bother me. I was happy until I was yanked out of my childhood. But in spite of the secrets I only shared with my diary - something I all of a sudden needed - I kept on talking to my friends about everything under the son. I was the leader of all conversations.
My ‘talking disorder’ was identified by my husband (to be), the day he shouted at me: “Can’t you be quite for a minute? I can’t hear my own thoughts because you are thinking aloud all the time, irritating me with every damn thought that pops up in your mind.”
"Okay, now how do I change myself in order to keep him happy?" I asked my diary. And the answer I got was: "Don't share your thoughts with him."
Until today I take my mind off physical and emotional pain with humming. Oh, and singing to my children, and now also to my grandchildren, had the same positive effect on them. (Next time you are in pain, try singing/humming/moaning yourself to sleep.)
I became for the first time aware of the appearance of my legs after the last operation I had at the age of fourteen. I noticed that all the girls, except me, had beautiful calves. My legs above my knees were beautiful, but below the knees I had only straight poles and ugly feet while they had awesome calves and slender feet. Naturally this awareness instigated an inferior complex I still have today, which I inhibit by wearing slacks or dresses long enough to hide my missing calves. Mini's were the fashion when I was a teenager, so I worn the shortest skirts with boots or sandles with bootlaces. Nobody ever noticed there was something wrong with my legs and feet until I told them and showed them my scars.
Although I walk normal, I am not able to walk as far as normal people. I am able to walk one mile, while they can walk five. In shoes with too high heels I am not able to walk at all – two inches is my limit. Comfortable shoes in which my feet look normal and even pretty is hard to find. My feet are not too small – I wear number four shoes – but it is broader than normal feet and the bone structure appear to be bunions on the first joints of the little toes.
Recently artritis in my ankles bothers me sometimes, but after treating the pain and inflammation with some brufin I am up and about again.
I am aware of the fact that there are many people born with clubfeet or a clubfoot who are not so fortunate as I. In many Africa countries no treatment is available for children born with deformities, in some countries they are summarily killed immediately after birth. There are also those who have to cope with pain and discomfort daily because their treatment and surgery were not as successful as mine. My heart goes out to all of them, and they will always keep me humble and grateful and even sad because I was more fortunate than they.
At the same time I am extremely thankful and filled with joy because I am able to walk and run like a normal woman while I could/should have been a deformed victim of some faulty chromosome, gene or syndrome if it was not for medical science and my open-minded parents who were able to realize that the will of God is beyond human comprehension... and therefor not to be underestimated and misjudged by humans.
© Martie Coetser
Famous people born with unilateral or bilateral clubfoot -
The Roman emperor Claudius, Egyptian pharaoh Tutankhamun (who also had a cleft palate), Prince Charles de Talleyrand-Périgord, 1st Prince de Bénévente, Civil War politician Thaddeus Stevens, American comedian Damon Wayans, sledge hockey player Matt Lloyd, mathematician Ben Greenberg and filmmaker Jennifer Lynch, the British poet George Gordon Brown (Lord Byron), novelist/poet Sir Walter Scott, the famous figure skater Kristi Yamaguchi, soccer star Mia Hamm, baseball pitchers Larry Sherry and Jim Mecir, Freddy Sanchez, football players Steven Gerrard, Miguel Riffo, Charles Woodson, Tom Dempsey (born with a right club foot and no toes, which was his kicking foot responsible for the longest NFL field goal in history) and quarterback Troy Aikman. The Nazi Propaganda Minister Joseph Goebels, Captain De Witt Clinton Fort, actors Damon Wayans, Eric Richard, Gary Burhoff, Eric the Midget, Dudley Moore and, of course, many others we don’t know yet.
More information about clubfeet -
- Club Foot
Club foot is a common disorder in which one or both of a baby's feet are turned inward and downward and can't easily be moved into a normal position. Learn about the diagnosis and treatment of newborns with clubfeet.