Congenital Talipes Equinovarus

A Life with Bilateral Clubfoot

Hi everyone,

I hope that this message finds you happy and content.

I was born in 1983 with very severe bilateral clubfoot. My parents were two working class people in their early twenties and I was their first child 9 months after their wedding. They jumped into the pool head first and probably found that they had bitten off more than they could chew.

Fortunately they were both excellent people and they worked hard to make sure that I received the surgeries and treatment necessary to “fix” my feet. I have never been able to be athletic or play sports but I can walk, hike, swim and do other low impact activities. Although both of my legs are shorter than they would otherwise be, you couldn’t really see much difference between myself and other kids. That didn’t stop kids from bullying me or from humiliating me during sports but luckily kids grow up, and by the fourth or fifth grade that behavior came to an end. I was lucky to have good friends who cared for me and accommodated me into their activities.

Dating was always hard, I have a much larger upper body than is proportionate for my leg length, so I am 5’ 8” when most of the men in my family are 6’ tall. I do look a little like an oversized dwarf, I suppose the beard doesn’t help. Obviously for both men and women, dating with clubfoot can be difficult because we are handicapped and people are often romantically prejudiced against the handicapped. I suppose it’s biology that we all want pristine partners so I am not angry about it, but it made being a teenager hard, especially when you grew up thinking that your feet were “fixed.”

In spite of this hurdle there is hope, and people will love you for your best qualities more than they will be turned off by your weaknesses. I’ve had several wonderful partners and my current Girlfriend and I have been together for two years. It has been wonderful.

Every now and then my feet will inflame to the point that I cannot use them. I will be bedridden for a handful of days. I have found that taking Ibprofen and using a pair of crutches during these times really helps and within two or three days I am back on my feet. This happens maybe once or twice a year.

The rest of the time I am quite fortunate to be without much pain. I can’t run or jog or do anything like that, I also don’t have the ability to balance well enough to do much Yoga. However, I can lift weights, swim, do palates and utilize elliptical machines. The college I did my masters in had Precor Adaptive Motion Trainers with free-stride technology and I have found that they allow me to burn far more calories than a normal elliptical, but without subjecting my feet and joints to high impact running. If you can find a gym close by that uses them, or if you can afford one on your own, I highly recommend them. I also recommend rowing because you can burn almost as many calories per hour as running, but without damaging your feet and joints.

https://www.precor.com/en-us/precor-amt-open-stride

About three years ago my mother convinced me to go meet with a shoemaker named Randy Merrell. He was the founder of Merrell Boots. After selling his company’s to get out of the corporate world he set up a shoe and insert shop in Vernal, Utah as a Certified Pedorthist. His dad had clubfoot and he has been motivated by his dad’s life to help people with clubfoot and other leg/hip/spine/ and feet problems to have a better shot at preserving their quality of life. His son carried on the tradition by becoming a doctor who specializes in clubfoot. Two generations of serving those of us with clubfoot all out of love for their dad/grandpa. They are good people.

Anyhow his shoes dramatically improved the quality of my life. Before this I had lived fairly normal until about I was 28. Then my ankles began to roll out, and my feet began to become very sore. On top of that because of how my weight and pressure was distributed in my feet, I would destroy my shoes just by walking in them. I was buying a new pair of shoes once or twice a month when my mom talked me into visiting him.

He sets a mold of both feet and creates custom inserts for each shoe. He then watches you walk and takes measurements to see how your hips and spine align. He then tells you what he thinks he can do to help you have shoes that meet the needs of your body. If you agree then he gives you a list of shoes and boots that he can modify to help you, as well as several options on where to buy them. Once he has the shoes he will modify them to reinforce them where they need to be reinforced and to help you walk in a way that does less damage to your joints and spine.

I was very skeptical especially since the cost of the boots and modification is about $500 and the inserts are another $500. The inserts you can reuse as long as they will last, my boots have lasted for two years before they needed to be replaced.

Today I met with Alexej Barg MD, an assistant professor at the University of Utah and it’s Orthopedic Care Center. He was quite enthusiastic about the boots and told me that he would write a prescription for them if that would help my insurance cover part of the cost. He argued that it is in their best interest to do so because it may delay or prevent the need for fusion surgery down the road. I am looking into this option, if my insurance decided to help out I’ll come back and let you all know.

Anyhow, because of the enthusiastic reception that Dr. Barg gave the boots, I thought it might be worth recommending them here for other people who have clubfoot. I was in a lot of pain when I met with Randy Merrell and now I am not. If I had met with him years ago, it may have prevented my feet getting to the point they were in when I first went into the Merrell FootLab.

Because the Merrell FootLab is locates in Vernal, which is a remote mountain town 3 and a half hours away from the Salt Lake City airport, many people feel that they can’t make the trip. I believe he told me that he has overnight facilities for people who need to make a longer trip out to his shop but because the fitting and tayloring of the first pair requires multiple visits many people find that they can’t utilize this resource.

Fortunately, The Merrell FootLab just opened up a new clinic in Heber, Utah which is about a half hour away from Salt Lake City. It is also close to Park City and it is a beautiful mountain town settled by Swiss Waldensians who joined the Mormons in the 19th Century. It has lots of Swiss and German architecture, a hot spring, an ice castle in the winter, and lots of good food.

The New Clinic will be open every other Thursday (twice a month.) Hopefully it will do well so they can continue to make their services more readily available to people who would benefit from them.

If you are in pain, or would like to delay or prevent yourself from getting to that point, Randy Merrell and his young apprentice Preston Barker (who is now taking over the business) might be able to help. I recommend them because they did so much for me, and my quality of life has improved so much since I worked with them, and because Dr. Barg and his assistant were so enthusiastic and curious about my boots which they couldn’t stop praising once they looked them over.

If you think Randy and Preston might be able to help you, and you don’t want to make the drive to Vernal, their new shop in Heber might be able to help.

Here is the contact information for the new location:

Merrell Footlab
Wasatch Chiropractic Clinic
871 West 100 South
Heber, Utah
435-789-3079

I’m also going to include their URL for the website to their current location in Vernal.

http://www.merrellfootlab.com/

The message I want to share is that although being born with clubfoot is a hard lot in life full of difficult challenges and painful experiences, it can still be a fulfilling and enjoyable life. I am very fortunate that I have had it as good as I have, and I know that many people have had it harder than I do. I would not want to detract from their experience or suggest that a can-do attitude will somehow fix the challenges that many people face. Unfortunately, life is not always that kind.

But, there are things you can do to help improve the quality of your life, and if you are the parent or loved one of someone with clubfoot there is much you can do to help them overcome the burdens and hurdles this of us with this condition have to face in life.

Don’t despair and don’t give up hope, because although we have been given a bad lot in life compared to the ideal of being born with “normal” feet, we can still have excellent happy lives. Many people without clubfoot end up far less happy, and far more miserable than I have ever been. Being born without clubfoot is no guarantee that life will be good to you. Being born with clubfoot is not a death sentence or a condemnation to a ruined life.

Personally, I’m grateful for my bilateral clubfoot. As someone who has most always been very popular and loved, and as someone who is very intelligent (and at times arrogant about it) my bilateral clubfoot has kept me humble, and the suffering it has caused me has kept me compassionate for the suffering of others. That was perhaps a blessing in disguise.

Thank you all for letting me share my story. I hope that it helps you on your journey and may life be so rewarding and good to you that you overflow with more blessings than you can hold onto.

🙂

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