Leah

I was diagnosed with Congenital Hip Dysplasia around 1 year of age in 1982. A friend of our family had noticed a difference in the length of my legs. I never really crawled. I am told that I pretty much skipped crawling (other than scooting). I was always told that this was a hereditary condition. My Aunt was diagnosed and always walked with a limp. She went on to have 4 children. 2 of her children also had this condition.

At the age of 1, I was put into what they called “traction”. They tried to reset my leg with some type of hanging device. There was a waiting period to see if that would correct the issue. That did not work. At the age of 4 I had another surgery where they tried to correct it by operating on my femur bone. I have a scar about 10 inches down the side of my leg from it. After that surgery was complete, I was put in a body case for about 6 weeks. I proceeded to go through physical therapy and learn to walk again. During my post-operational exams, my doctor concluded that the surgery did not work. They tried the same surgery again when I was 6 years old. I went through the same recovery process. I had another body cast for 6 weeks along with physical therapy. During my post-operational exams, my doctor concluded again that the surgery did not work.

At the age of 8 years old, my doctor performed a pelvic osteotomy on my hip. Again, I was in another body cast for 6 weeks. Post-surgery it was back to physical therapy and learning to walk again. (It left an additional scar about 10 inches long down the side of my body.) However; this time, during my post-operational exams, my doctor saw a stable improvement in my hip.
I am now 33 years old. I live a very normal and active lifestyle. That is the key element to this issue. You must stay active and keep that hip mobile. I do a lot of mobility exercises. I know my limitations. Running and jogging aren’t really good for me. However; I am a member of a Crossfit gym. If anyone understands Crossfit they know that it is a pretty intense work out. I modify my workouts to support/protect my hip. Keeping one’s weight down is also a key to this as well. As a 33 year old woman, I have to watch my weight. I can feel my hip mobility decrease when I put on added weight. It aches more frequently if I am not active. I’m trying to keep myself in the best shape possible because I want to try to avoid a hip replacement for as long as I can. Maybe I’ll never have to have one if I keep my hip healthy and mobile.

I have a lot of experience and information regarding my case. This is a long drawn out experience summarized. I have a ton of pictures of being in a body cast. I would love to share any information that could be helpful to someone else. This was difficult on my parents when I was a child. I can’t imagine what some of these parents are going through. There isn’t a lot of data out there that I’ve found on post-surgery osteotomy results. I want to learn more about what (if anything) I can do to prevent myself from having a total hip replacement. It still feels like a “wait and see” game at times. If I can be of any assistance to anyone, please feel free to email me or comment on this story.




Is this your story? Log in to reply to comments.

6 Notes

+ Leave A Note

  1. Julia says:

    I was born in 1981 and had congenital bilateral hip dysplasia. I was put in some kind of brace like overalls with a big bottle between my legs and like “Forrest Gump” braces on my legs. My knees are now turned in like 45 degrees. I began having pain in my right knee when I was 12. My daddy took me to the Ortho when I was 15 and he determined that I had patellar maltracking. So I had a lateral release done when I was 17. It didn’t work. I saw another Ortho and in 2005 had another surgery on my knee to remove scar tissue. That made my knee worse! So I went to yet another Ortho and I had another knee surgery in 2009 to repair my torn lateral meniscus. That repair did not hold and now all the cartilage in my knee is gone. I began having hip pain in 2010. My right hip began locking up and clicking and snapping and slipping like it was trying to dislocate. So I went to see a hip specialist in chicago. He told me that I have moderate-severe bilateral hip dysplasia STILL!! Apparently the doc I saw as a baby lied to my mom when he said I was cured and I would never have another problem with my hips again!! Anyway, because my femoral head is oval instead of round, I tore and ripped off my labral cartilage in my right hip. I saw the 3 hip specialists in chicago and they all told me that they will not fix the labral cartilage because my funky shaped femoral head would continue to rip the labrum off and I would have to get it re-repaired every few months. I now have NO cartilage in my right knee ( and it hurts like hell everyday) and my hip is all sorts if unstable and hurts almost as much as my knee does. I am on so many narcotic pain meds and they only dull the pain a little. NO doc will give me the knee or hip replacement because 1-I am too young and 2-I am screwed up, but not enough!! So I don’t know what else I’m supposed to do. I have seen approximately 100 doctors in the past 20 years and nobody can do anything. I’m so frustrated and in so much pain I just wanna cut my legs and hips off!!
    I want the replacements because I would hope it would take away some if not all of my pain!! I used to walk all the time and that helped my knee a lot, but the docs say because my hip is screwed up as much as it is, I shouldn’t walk anymore. Because I’m just doing MORE damage to my hip!! (But if that will damage it enough to where they will fix it, I would gladly keep walking!!).

    I had to quit my job as a paramedic because it was getting dangerous for my partner, my patients, and me. I never know when my hip or knee is gonna give way. And I would wind up hurting myself more and potentially hurt someone else too.

    I don’t know what to do anymore!! Do you have any ideas or suggestions??

    Thanks
    Julie

  2. Sarah says:

    So impressed with your story and your perseverance! Unfortunately, I was not able to preserve my hips but I have a 4 year old with the same condition who had 2 successful surgeries and I am glad to know what she can do in her future to hopefully keep her hips healthy. Thanks!

  3. Leah says:

    Julie,
    I’ve been thinking about your post since yesterday. Stories like yours make me feel blessed that I had the right surgeon. My parents questioned him at times, but we are sure now that he was the right doctor for us. I can tell you that in regards to research that I have done on hip replacement, I would avoid that at all cost at the age of 33. That’s too young. The replacement technology is not there yet to last more than 15-20 years. Multiple replacements don’t always far well. They can only do so many before they run out of space/bone to work on. Have any surgeons ever suggested pelvic osteotomy? We have some very good doctors in Louisville, KY. We are only 6 hours from Chicago. You should look into maybe having a consultation and see what they say. Your case is very different than mine. However; the abnormal shaped femur can be corrected, in most cases, with some of the osteotomy surgeries, I believe. (From what I research)

  4. Leah says:

    Sarah,

    People like you are why I shared my story. My parents didn’t have much knowledge about this when I was a baby. It must be hard on a parent to not know the outcome. However; if it is done right and caught early enough, there are all kinds of technology for this. With preventative maintenance, you can preserve yourself better. You should put your child into swimming. That was THE BEST exercise for my hip and I absolutely loved it, was good at it, etc. It’s very good for the muscles around the hip. It still amazes me though that had my delivery doctor heard the “click” at birth, I could have been double diapered or put in a sling and avoided everything! Please be aware of that if you have other children. It can be detected and prevented in some cases!

  5. Stacy says:

    Leah,
    I want to thank you for sharing your story. I’m sorry they didn’t catch it at birth, but you’ve given me hope to help with my pain, and mission to avoid hip replacement! Thank you so much!

  6. Leah says:

    Stacy,

    Good luck, stay fit, and study about what you can do to keep mobility. All of those things will help! You’re welcome!

Leave a Reply

  • Social Media Links

  • Translate Link

    Para ver en Español Click Aquí

  • SubNav Menu

  • Latest News

    Latest News

    view all

    Ten-year-old Wyatt Whitney passes hip exam with fl...

    Mar 15

    Wyatt Whitney, son of Larry-the-Cable Guy and his wife Cara was born w...

    Hip preservation surgery vs. Total hip replacement

    Mar 08

      Hip preservation surgery has been a remarkable advance for y...

    New Guidelines for Evaluation and Referral of DDH

    Jan 17

    After 16 years the American Academy of Pediatrics has updated and revi...

  • Latest Stories

    Latest Stories

    view all

    Missy Smiley

    May 12

    So my story really started as a child. My hip would pop out of place a...

    Missy

    May 09

    Hello all. Growing up I had no idea that there were others like me. Ex...

    Cara

    Mar 28

    I first began experiencing hip pain when I was 17 years old and a ...