Patient Stories

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.