Lauren’s Story

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My hip dysplasia journey began in August of 2019, but I was very familiar with the medical world prior to that. I was born as a quadruplet and spent the first few months of my life in the NICU with my siblings. Along with that, I was diagnosed with a rare form of dwarfism called Conradi-Hunermann Syndrome which primarily causes musculoskeletal abnormalities. There’s a lot to my story before my hip dysplasia diagnosis, but I’ll be brief because there were important parts along the way that led up to it.

Early in life, I was followed by an orthopedic specialist to monitor my scoliosis (curvature of the spine). After a few years, my spine specialist referred me to another orthopedic surgeon because, as I grew, it became more apparent that my left leg was going to be significantly shorter than the right side without treatment. I was 3 years old when that new specialist told my parents to “just amputate” because it was the only option. Shocked, they sought a second opinion.

We met Dr. Kasser at Boston Children’s Hospital when I was four years old. I owe so much to him. He instilled hope in my parents that amputation was not necessary and that I was a candidate for leg lengthening surgery. However, since my hip was deformed at birth, presenting with a short femoral neck (coxa breva) and a reduced angle between the femoral head and shaft (coxa vara), I first had to undergo a hip reconstruction in order to make my hip stable enough to handle the stress of leg lengthening.

I underwent a valgus osteotomy at the age of five and spent the whole Summer in a spica cast. Dr. Kasser and my parents gave me the option of when to have the surgery, so I brought it upon myself to do it during the warmest time of the year. Of course I couldn’t miss school, so Summer vacation was the next best thing!

About a year after that hip reconstruction, it was time for my first leg lengthening surgery. My left femur measured approximately 2 ½ inches shorter than the right so the plan was to lengthen the left side using an external fixator. Ultimately, the lengthening process had to be stopped prematurely because my hip couldn’t handle the stress, causing a partial dislocation– this may foreshadow my hip dysplasia diagnosis!

Now, I’ll fast forward a little bit. From that second surgery at 7 years old until my left hip started causing trouble again at the age of 19, I went through 14 more orthopedic surgeries ranging from spinal surgeries to a couple more leg lengthening procedures, multiple foot/ankle reconstructions, and two hip arthroscopies (on the right side). During my Freshman year of college, my left hip became so painful that I could barely sit through class, also making it difficult to walk around campus. I was referred to Dr. Novais at BCH who felt that my severe proximal femur deformity should be addressed again and was surprised it hadn’t caused pain sooner. He decided in March of 2018 to do a surgical hip dislocation with a relative femoral neck lengthening because my greater trochanter was constantly impinging on my hip socket. That surgery was just miraculous as I was pain-free on the left side, able to run, play softball, and even simply sit through a full class again!

It’s hard to describe the joy that came with doing things that my body once stopped me from for so long. In May of 2019, however, I underwent a final leg lengthening surgery, this time at a different hospital and with a surgeon who didn’t know me or listen to me well enough. My leg length discrepancy this time was approximately ¾ of an inch, which doesn’t sound like much but the body compensates for any deviations and my right hip and back were particularly sensitive to this. So, I went through with the surgery, the lengthening process, the rehabilitation, and I ended with my left leg longer than the right because it was over-lengthened. I had to see Dr. Novais that Summer even though he had just cleared me to not have to come back after my 1-year post-op appointment just days before the leg lengthening surgery. He found that as my leg lengths became more even, and my pelvis shifted to a more neutral position (as opposed to tilted towards the left), it uncovered my femoral head leading to subluxation (partial dislocation) and instability of my hip. This was completely devastating and ultimately in January 2020 we decided a PAO was the best option.

I just had my PAO on May 19, 2020 so I have a long way to go to get back on my feet. I’m fully trusting this process with the goal of being able to run again and not take one step for granted. 

I often think about how my story could have turned out much different if my parents agreed with the surgeon who said that amputation was the only option. We don’t know exactly what it would have looked like to pursue that route. Possibly fewer surgeries. Or maybe not. But I wouldn’t change how it all unfolded because although my hip dysplasia and other conditions do not define my life, they certainly helped to shape it and I never want what I’ve learned from these experiences to be lost upon myself. I’ve learned to be my biggest advocate, find strength when it seems like life wants to knock me down, appreciate the little things, and just embrace the journey. Everything I have been through has sparked my passion to pursue a career as an orthopedic surgeon so that one day I can help patients through some of the same challenges I’ve faced and also give back to the doctors who have given so much to me.

I document my journey on my Instagram page (lauren.schoeller) so please feel free to follow along!