Hi everyone. My name is Madonna. I was born in 1979 with very, very severe bilateral clubfeet. My feet were turned in, over to where the bottoms of my feet faced my face, and the inside of each big toe came together to meet the inside of each heel. I was born on a Saturday evening and first thing Monday morning the orthopaedic doctor on duty had both of my feet casted.
For weeks he tried casts and manual manipulations. Nothing was helping at all and he labeled me a resistant clubfoot. Finally, at 6 weeks he did surgery on the left, which had the worst deformity, then at 12 weeks, he did the right. Mom said she recalls about 26 surgeries between the two feet in my first year and a half of life. My doctor told my parents that had I been born just 10 years earlier, I probably would have never walked because the surgical technology for repairs of that extent didn’t exist then.
The result… Most of the bones in my feet and ankles are fused together, leaving almost no movement, but I can walk. I walk on the outside edges of my feet, but I can walk.
As long as I can remember, I’ve always had pain though. I can remember being very young and begging my parents to massage my feet and ankles. I never could run, but I wasn’t completely inactive. I was never able to do what the other kids did, but did what I could.
One instance I remember was when I was about 5, I was at a family reunion in a very rural part of south-central Kentucky. It was my grandfather’s sister and her husband that we were staying with. Lots of my cousins were there and my great uncle decided to take us on a hike. My mom warned him to watch out for me! Most of it went ok, until he took us up this super steep hill. He and my cousins made it fine, but I didn’t have the flexion in my feet to get any footholds. Meanwhile, they’re at the top yelling for me to come on. I found a large foot sticking out of the hillside and was trying to use that to boost myself up. That didn’t work. And… I fell face first into a yellow jackets nest. When my great uncle ran down to get me, he picked me up and ran me back to his home. I think my mom picked about 30 stingers out of me. Good thing I wasn’t allergic! The good thing is that I’m not a bit afraid of bees now.
I can vividly remember loving to go to a local amusement park once each summer. It was kind of expensive so we’d get in as much as we could in that day. By the end of the day, I pretty much had to be carried back to the car because my feet hurt so bad. Then, for 2-5 days afterward, the pain was so severe I couldn’t walk. Those were occasional times. For the most part, the pain I had, I could deal with.
In school, the teachers knew my issues. In PE where I went, we weren’t graded. The teacher let me do what I was comfortable doing and didn’t push the issue if I felt like I needed to sit out an activity. ( I was great at wrestling.) Then, in the 4th grade, we moved and I had to go to another school district. PE at this school was graded and despite doctors notes on top of doctors notes, (no running, no jumping, or anything that caused me pain), this teacher made me do things like a whole unit on jump rope and run a timed mile. My pain level just kept increasing. Eventually, toward the end of the year, my doc did extensive imaging and discovered multiple fusions in both feet and ankles had snapped apart. I’ve been in pain to some degree every day of my life since.
I’ve been in multiple types of orthotics and braces throughout my life, but my feet are so rigid they hurt more than they help.
I was seeing another foot specialist and had planned to have another surgery the summer before I started night school. Well, with about a month left in 8th grade, I was in school and was sliding into a chair sideways, because the classroom was packed like a can of sardines. And just like that, my left knee completely dislocated. Went into a knee immobilizer for a month, my foot surgery was postponed till I healed. Eventually, I healed somewhat and they did the foot surgery. I was homebound because there were no elevators at school and with both legs bad, I was no good on crutches. I finally was able to attend classes in person about 4 months into the school year. I got no relief from the surgery btw.
Two of my orthopaedic surgeons, one a foot specialist, have told me that I am The The worst case of clubfeet they’ve seen by a mile! The specialist spent many years caring for the dancers with the Cincinnati Ballet and was a doctor with the Cincinnati Bengals for years.
The following year, my left knee started up very bad again. I had to go back out of school and had arthroscopic topic surgery and the put my knee back into place. While I was recovering from that my right knee came out and I had to have the same surgery on that one. Fast forward to my senior year and my left knee acts up again. The plan this time is to cut my lower leg bones and patella tendon and realign my leg. A very major surgery. Probably the most painful I’ve ever had. It worked for a while, but in my mid twenties, both started to hurt again. I go back to the doc and both of my knee caps are subluxated. (Partially dislocated) At this time they figure out that it is being caused by the poor biomechanics of my feet. I walk on the outer sides so that puts outward force on my knee caps. Both are still partially dislocated and eventually, I will have to have knee replacements.
Since then, I’ve had hip issues, for the same reason. I was in a car accident at 19 and that led to me having to have back surgery. Helped for a while, but the same disc went bad again as well as the one right above it. In recent years I’ve had shoulder issues. About a year and a half ago I had neck everywhere they re.over three discs and fixed my neck in three places. I still need surgery on the back of it, but the spine surgeon says it would be harder and be more dangerous for me. We have no idea how my neck got as bad as it is. I’ve had other surgeries for various other issues as well. I’m a diabetic, diagnosed at 16, but they think I have been since age 8. The last 10-12 years, I’ve been diagnosed with some pretty rare conditions and diseases. In the past couple of years also learned that I was born with several heart defects.
I’m 38 and have been on disability for a little over a year. I just saw a new doctor about the stabbing, burning pains going on in my right foot. He says my xrays are difficult to read, but he does see something going on with my cuboid bone and also sees at least one area where I have osteonecrosis. He sent me for an MRI and basically told me that it’s for planning a surgery that I will almost certainly have to have.
I’m sorry this is such a novel. I did not intend it to be. I would just like to say to others out there, that you’re not alone! I would also, like to ask if anyone else was born with other birth defects? Or maybe diagnosed with any rare conditions in your life? I’m open to any questions anyone might have. It has been and will continue to be quite a ride for me. I know that I’ll never be ppain-free but I also know there are people out there who have it a lot worse.
Blessings to all!
Madonna,
We sound very similar except I was born in ‘46, had 14 surgeries ages 3 mos.-12 1/2 yrs. I had a wonderful surgeon in CT. Who did 2 ankle fusions for stability and enabled me to walk with corrective shoes and eventually, “regular” shoes with ties or straps. Of course, I’m very flat footed and wore childrens’ sizes. I finally had molds made and 2 sets of shoes over many years. I walk on the side of my left foot, the worst, and have had many calluses. They haven’t kept me down. I’m very independent, since age 5. I had a 37 year professional career as a Speech-Language Pathologist, traveling to up to 6 school some days, carrying my materials.
I choose to use “difference” as opposed to disability (in the eye of the beholder), defect, or disorder. I have never focused on disability but rather, ability. All people have abilities.