Pam’s Story

I was born in the early 80’s and the moment my mother first saw me she knew something was wrong. When she held me, she noticed that my little feet were unusually crooked and that one of my stubby baby legs dangled lifelessly. She voiced her concerns repeatedly to multiple hospital staff but they all assured her that I was perfectly fine (“poor co-ordination”, they said) and that she was being a paranoid first-time mother. I was soon discharged and sent home, despite my mother’s protests.

When I was 3 months old, my mother took me to see another doctor. Just by looking at me, he could tell something was very wrong and arranged for me to be seen at the hospital. There, I was diagnosed with bilateral clubfoot and a completely dislocated left hip.

Clubfoot and dysplasia can occur separately but it’s not unusual to see them together. No one knows exactly what causes either of these conditions…it can be genetic, environmental or possibly even a bit of both. In my case, there is most likely a genetic factor. There are a number of people on my mother’s side who have had either clubfoot or dislocated hips, but only I have the distinction of having both.

Because of the severity of the dislocation and the amount of time that had passed, I was considered a surgical case rather than a good candidate for double diapering and simple foot manipulation. Thankfully, I wasn’t going to need open surgery to put my hip back into place. I was going to have closed reduction surgery, a procedure in which I would be put to sleep and the bones manually realigned. To prepare for this, I was first put in Gallow’s traction (see picture below).

Gallow’s traction is used for two main reasons: it helps increase blood circulation to the hip and stretches the soft tissues in the leg and hip to help the femoral head go back into place. Once I was good and stretched, it was time for the closed reduction. After my hip was maneuvered back into place, I was entombed in a full body cast to keep things stabilized and to allow my hip to grow correctly. During this surgery, the doctors also corrected both feet and casted them into their correct positions. I was literally casted from chest to toes!

I was discharged while still in my cast and apparently, it was as much a buzz-kill for my mom as it was for me. While everyone else got to cuddle their babies, she had to lug around (in her words) a “block of plaster”. Her “block of plaster” was heavy and considerable force was needed to pick me up. (Later, she said that once the cast came off, she was so used to slinging that much weight around that she had to be careful not to accidentally launch me in the air.)

However, the cast was not the end of it. After it was removed, I was then bound in a confusing looking contraption known as a Pavlik harness. The thing consisted of an octopus of braces, velcro, and straps to bind my little limbs in an unnatural and undignified-looking position. My feet, still needing some extra work, were re-set and splinted. It would be over a year before I would be free of all casts, braces, harnesses, and splints – but it was worth it.

By the time I was a toddler, you would never have guessed I was born with anything wrong. I grew into a very active kid and teenager and knew no physical limits. I played volleyball and badminton, rode horses, hiked with heavy backpacks, and I could run for miles. The only thing I ever noticed was that I had an uneven gait, my ‘bad’ leg always seemed to twist inwards a bit, and it always felt a little weaker and stiffer than the other. However, it was never enough to really bother me.

But then I turned 20.

The pain came so suddenly I thought I’d simply pulled a muscle. I was just starting my third year of university and woke up one morning to discover a catching sensation in my left hip accompanied by a sharp pinching pain when I tried to walk. I was 100% fine when I’d gone to bed the night before so I assumed that I must have slept funny or jumped out of bed too quickly and pulled something. After a few days of limping around with no real improvement, I saw a doctor.

This was the first doctor I had seen about my hips in over 17 years. Because it had been so long, the doctor gave me a very thorough examination and sent me for X-rays. I discovered that I had an uneven leg length (which is not uncommon for people with dysplasia), a slightly tilted pelvis, and some minor inflammation in the joint. She referred me for physiotherapy to help strengthen the hip muscles (which compensates for the joint) but little did I know that this was the start of a 9 year journey.

Physio helped at first but as time went on, I’d get a slight dull ache in my hip that would last a day or two and then disappear. I noticed it usually happened right before a drastic weather change and during cold, damp weather so I chalked it up to a little arthritis flaring up and paid it no real attention.

As the years went by, the pain became more frequent and would last longer until one day it just didn’t go away. At 25, I found myself in constant pain and finding it more and more difficult to do everyday things. I sought medical attention and X-rays showed my hip wasn’t in place properly. I was referred to an orthopedic surgeon for further treatment and after a long wait, was sent for an arthrogram-MRI.

The scan showed the cartilage surrounding my joint had been torn away and that the femoral head was misshapen. The surgeon was hesitant to operate due to the underlying dysplasia but finally he agreed when I started getting even worse. During the arthroscopic surgery, he removed all the damaged cartilage and bone and “cleaned things up.” Unfortunately, the surgery failed so it was repeated again, but that one failed also. I later found out that arthroscopic surgery has a higher failure rate in people with dysplasia, but I’m glad I tried it.

A few weeks ago, at age 29, I had my left hip replaced. It has been over 9 long years of progressively worsening symptoms that led to this point but I’m very pleased with my new hip. I am pain-free and able to do so many things I haven’t been able to do in years. It was not a difficult decision to make!

To this day it boggles my mind how no one at my birth hospital caught anything despite several ‘examinations’ by trained medical personnel. I guess this goes to show that you should always follow your gut instinct and follow-up on things that don’t seem right. On that note, I want anyone reading this to know that the reason I’m sharing my story is not to scare anyone. Although unfortunate, hip replacement at a young age is a possibility for someone with hip dysplasia. I had no idea. No one ever told my mother or I what to expect, so that’s why I am an advocate for sites like this one. Looking back, I wish I had asked for a surgeon referral years earlier, back before my hip got so bad it needed replacing. Maybe earlier intervention would have helped – or maybe not. The best advice I can offer (to parents and patients) is to have the affected hip periodically checked (even if things feel ok…changes can be subtle), give physiotherapy a try, and most of all, be your own advocate.

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  1. Jane says:

    My story is very similar to you except after my body casts and braces I had to under go 7 hip surgeries in my childhood. The last one was when I was 7 and then it finally stayed in place. 3 years ago I also had arthroscopy with micro fractures and ultimately ended up with my total hip replacement 20 months ago. I was wondering how long you are post op? I have quite a bit of pain still especially after walking a lot then sitting or lying down. I also get a lot of leg swelling and just recently some foot tingling. My ortho tells me nothing is wrong but I didn’t know if this is the process of healing or how it will be because if the underlying dysphasia. I also totally feel any weather change do you? Please let me know if u have experienced any of these… I am young as well, 37. Thank you!

  2. Renee says:

    I knew you had hip problems while growing up, but no idea that you went through so much. You were so amazing at sports, such a positive influence, and never slowed down. I admired that about you. I’m lad your feeling better, and can do things you haven’t been able to do in so long. Maybe one day we can have a match of badminton for old times sake.

  3. Irma Quezada says:

    I am a 45 year old woman who was born with hip dysplasia, never did anything about ituntil this year when I couldn’t support the pain anymore. I had my first total hip replacement on July 2, 2012 and my second on November 26, 2012. On my second surgery my DR. told me I had to get the another surgery on my right femur because is loose, that explained the pain on my right thigh, other wise i am fine. a lot of swelling and pain on my Knee on my second surgery, but the DR. tells me thats part of the healing process. otherwise my hips re fine stll walking with an aid. one day i will share my life story, living with hip dysplasia for 45 years

  4. Rahnuma Amino says:

    I am with right hip dysplasia.having pain now a days.Donno wat will happen.I am scared.I am married and scared if I am too sick where it would lead me.keeping my finger crossed

  5. Mandi says:

    I am 25 years old, I have had hip dysplasia since birth. I have been experiencing sharp pain in my hips for the past year. Just like the sharp pitch you described. I have put off going to the doctor out of fear of yet another surgery. I have had 5 in my life time, 4 as an infant and my 5th when i was 10. I feel the pain is getting worse, I experience swelling in my ankles and legs very frequently and extreme tightness in my hip. I’m also a single mother and fear that if something is wrong, how can I take care of my son if I’m in a huge cast again. I have pins holding my hips together. When I was ten they told me i would probably need hip replace to by the time I was 40. I fear that day has come sooner than expected.

  6. Erica says:

    I also have hip dysplasia, since birth and most likely genetic since every single person on my father’s side has had both hips replaced, since hip replacements were possible! I fortunately didn’t have multiple surgeries as a child but that mostly because I pushed through pain and never told my parents for fear of not being able to ride horses or play football… This made things way worse, when I was 20, I was training for the Olympics and took one of my craziest horses out for a run on the river to burn his extra energy before training, he spooked and threw me off, I was tangled in the reins and was dragged on a gravel road all the way home (just under a mile), I was completely skinned on my right side, went to the ER and they did full body X-rays and this was when I officially found out I had hip dysplasia, hernitated discs and that I was pregnant… Because I was pregnant they were unable to treat me with meds, PT or surgery only bed rest… I gained almost 6olbs during pregnancy and of course lost a ton of muscle… This put insane stress on my hips and back… Since that day I was unable to function with out crutches or a cane, my riding career done for… Took my Dr’s 5 years to do something about it… I was finally sent to an amazing ortho Dr that suggested a pao, I’m now recovering from my first surgery (done in Jan) and will have the other hip done Jan 2017… The hope is that I will be able to put hip replacements off at least a decade but will ultimately need them… I’m about 2mo post surgery, still hurting and still on crutches but I am going to the gym and doing my PT in the hot tub… Which helps so much! Praying I can get back to normal shortly!!

  7. Larry says:

    I’m a 61 y/o male born with a completely deformed right hip, bilateral club foot and hip dysplasia in my left hip. Club foot surgeries on my right foot left me with foot drop. A surgery on my right hip failed at age 13.
    I muscled through the pain and led a pretty normal life despite a bad limp and gait. At age 45 I had my right hip replaced.
    I’ve been pain free in my right leg for the last 16 years and consider my surgeon a master of the universe.
    My left hip is now causing me issues and I’m not excited about going under the knife again but it seems inevitable. Besides the hip pain my biggest issue now is the chronic back pain a lifetime of limping and muscle imbalances will cause.
    Orthopedic problems take a toll both physically and psychologically. No one ever seems to address the latter.

  8. Terry C Sims says:

    I am 67 and have hip dysplasia in left hip.When I was young I could turn my left foot in toward my right heel and a little further. My father inssisted that I see his chiropractor. The chiropractor found the dysplasia. He put traction on my leg and then pushed the femor into place. I had to do several weeks of therapy with him. Then, he gave me exercises to do to help keep it in place. I still do the exercises regularly, and see the chiropractor on an as needed basis. So sorry that others have had such a difficult time with this health issue.

  9. Becca says:

    I too was born with hip dysplasia as well as clubfoot in both feet and one foot joined to my thigh on the opposite leg (I was premature!) I had braces etc. till around the age of 2 and was a generally active child after this. I have always had an issue with my feet turning over and in the last 10 years felt I had one leg shorter than the other. I used to do a lot of horse riding but had to stop due to severe cramping in my hips which wouldnt go unless I straightened my legs out fully for around 2 minutes. More recently I have started having some pain in my knee which feels twisted if I walk normally (feet turned inward). It was very interesting reading your article – I think I may have to take a trip to the doctors :)

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