MY JOURNEY WITH HIP DYSPLASIA
My name is Maggie Manning and I was born with severe bilateral developmental dysplasia of the hips (DDH). When I was born, my hips were not located in their hip sockets and were unfortunately missed during routine exam.
At two years old, my parents noticed that I did not walk very much and when I did, it was significantly different from other children. After constant months of being told by doctors that it was ‘nothing,’ it was not until I was almost three years old that I received a hip x ray. We got a call that night from the off-duty doctor and were told there was an abnormality. We were sent to BC Children’s hospital where my family would finally receive a diagnosis of DDH.
Between the ages of three and five, I had five reconstructive hip surgeries that left me immobilized in body casts called hip spicas. As a family, we had to learn to adapt to a new lifestyle whilst finding new and unique approaches for daily tasks. At five, I began to relearn how to walk and run.
At the age of 10, an MRI showed my hips were deteriorating and would require further surgical inventions. I underwent two more surgeries which then resulted in a five-centimetre leg length difference due to surgical complications. Then, I underwent an additional three surgeries to correct my leg length difference. However, I suffered nerve damage resulting in a foot drop that is currently managed with an ankle foot orthosis. In the future, I will require a few more surgeries as a young adult, and total hip replacements in my thirties.
Although going through ten surgeries and managing a permanent disability can be overwhelming at times, it has shaped the person I am today. It has given me character, and many unique opportunities and experiences. One of the greatest opportunities I have been granted is the chance to compete in Paralympic Swimming and to represent Canada on the world stage. Swimming has given me a way to be just as fast and capable as my able-bodied competitors. When I’m in the water, my disability doesn’t limit me.
I plan to go into the medical field, where I will have the opportunity to give back and pass on the exceptional care I have received. I also plan to continue advocating for improved accessibility and inclusion of people with a disability, leaving a lasting impact on the world. As for now, I plan to live life to the fullest everyday.
My name is Elise and I was initially diagnosed with hip dysplasia at 8 months old. I was prescribed a special brace to wear while I was sleeping to try and correct it. However, 3 months later, I saw an orthopaedic surgeon who did more testing and found that I had spastic Cerebral Palsy. This meant that my muscles would progressively get tighter and I would require a different kind of brace and special physiotherapy. Over the next few years, I stretched every day but when my muscles got too tight I was given Botox to help relax them. However, I was still able to learn how to crawl, ride a tricycle, and walk using a walker while I grew.
When I was 4 years old, I had my first major surgery, a selective dorsal rhizotomy, at BC Children’s Hospital performed by Dr. Steinbok. Dr. Steinbok used a special tool to find and cut any unhealthy nerves that ran from my spine to my legs to keep my muscles from getting tighter. My leg muscles were very weak afterwards and I had to learn how to crawl and walk again. However, after the surgery I was much happier; my arm muscles were more relaxed which made getting dressed much easier and I could even talk faster.
I met Dr. Mulpuri one year later. In the beginning, we visited every six months and received Botox injections. However, they stopped working for me and my muscles were so tight they were pulling my hip bones out of place. Dr. Mulpuri had to surgically lengthened my groin muscles and put my legs into a cast for a month to hold my hips in the proper position. My casts were purple and pink candy cane striped with a Vancouver Canucks hockey stick keeping my legs apart. I was in kindergarten and got to go to school every day in a special wheelchair that held my legs up for me.
In May of 2017, I underwent surgery to reconstruct my hips, as they were still at risk of dislocating out of the joint. My left hip was 68% displaced and my right hip was 58% displaced. Dr. Mulpuri said I practically had 6 surgeries at once and I have 9 scars to prove it! Having to be in a hip spica cast was upsetting, but everyone at BCCH did their best to cheer me up. I got a pink and purple hip spica cast and Wendy, the nurse, even gave me a stuffie with a hip spica cast! I was in the hip spica cast for 5 weeks but that didn’t stop me from getting out of bed. Almost every day my parents and I went out for walks and treats and I had lots of play dates with friends, too. When my cast came off, I was only allowed to walk in chest deep water, so we started swimming 3-4 days every week.
I am getting stronger and stronger and can now ride a bike and stand with a bit of help. I am so thankful that Dr. Mulpuri was able to fix my hips with very little pain. It is going to take me a while to get back to doing what I did before, but getting a letter from the Hip Surveillance Program saying that my hips are now 0% displaced makes it all worth it! Dr. Mulpuri and his team are the best!
My name is Jason Drescher and I have cerebral palsy, a condition which has affected my legs. I was not able to walk properly because my legs crossed over one another which limited me from doing many activities. My family doctor referred me to BC Children’s Hospital to see Dr. Beauchamp who sent me to the gait lab where I underwent an analysis of my walking.
In October of 2014, I met with Dr. Mulpuri and his team for the first time. Initially, I was quite nervous but as the appointment went on, I became more relaxed. At my appointment, I also met Wendy (CP Nurse Clinician) and the occupational and physiotherapists. Dr. Mulpuri told me I would need surgery to correct my walking.
My surgery was on July 8, 2015. I felt quite calm beforehand but became more nervous as it got closer to the surgery date. I was in the hospital for a week following my surgery. I had six incisions – three on each leg because my thigh bones had to be cut and repositioned. I had to use a wheelchair as each of my legs had braces on them. However, the nurses that looked after me over the week were very nice.
I had to learn how to transfer myself from my bed to the wheelchair using a sliding board until I was strong enough to transfer myself. I found it hard to do certain tasks at home and at school when I was in the wheelchair, so I sometimes needed people to help me move around. While I was in the wheelchair, Dr. Mulpuri recommended that I start doing pool exercises. I found walking and exercising in the pool very fun and the people at the pool were very nice to me. In August of 2015, I was happy to learn that I was allowed to start physiotherapy and walking. My therapy was difficult at first but I learned how to walk with a two wheeled walker and then a four wheeled walker which I used at home and school.
Approximately, one year after surgery, Dr. Mulpuri ordered Botox injections for me to help relax my leg muscles. The injections helped but didn't last very long. My most recent appointment was on in July of 2017 and it was decided that further surgery will need to be done. I will a screw removed from my knee, additional Botox injections, and tendon lengthening in my legs. It will help to further improve my walking but I know that it will be a lot of hard work with physiotherapy again.
My journey has been difficult and at times very emotional; I try very hard to be positive and strive to do my best physically. I feel that Dr. Mulpuri and his team have had an incredibly impact in changing my life and helping me to walk better. The support from my family and friends as well as the BCCH team (CP Clinic) has meant a lot to me throughout my journey.
I first started having pain in 2015. I thought it was a dance injury as I am a highland dancer. However after several doctor appointments and tests, they told me I had Perthes disease in my right hip. Perthes disease stops blood from going to the hip bone which causes the bone to get sick, break apart, and often changes the bone shape.
I saw Dr. Mulpuri for the first time in the spring of 2016. He looked at my x-rays and told me I needed surgery to guide my recovery. I felt scared and cried a lot. He told me I would need to use crutches until my surgery. At first, I was really excited about getting crutches but after a while they got annoying – but at least I got really strong arms from using them!
I had to spend a total of 10 days at BC Children’s Hospital. My least favourite part was getting the laughing gas; it felt weird and when I woke up 4 hours had gone by even though it only felt like 2 seconds. I liked all the nice nurses, doctors, and volunteers at BC Children’s Hospital; my grade 3 teacher even visited me. I spent my time on the ward playing video games and having a Harry Potter movie marathon.
However, I dreaded the visits from the physiotherapists because they made me get out of the hospital bed. It hurt a lot but now I know it was good for me. Sometimes the nurses also gave me medicine that made me sick and that wasn’t fun.
I was on crutches for the summer but I was still able to go camping with my family and all my friends. I even swam in Allouette Lake. I was able to start walking on my own just before I started grade 4 in September 2016. Walking was hard at first since I hadn’t walked on my own in almost 6 months. Throughout the school year I couldn’t participate in gym and I couldn’t dance. But instead, I got to help younger kids learn to read during my gym time and I got to try musical theater instead of dancing and I loved it!
Dr. Mulpuri told me I could start running, jumping and dancing again at the end of July 2017. I couldn’t stop smiling and felt like I wanted to scream and jump for joy, I also cried a little. I can’t wait to start dance lessons again in September. I wish I didn’t have to go through surgery again as the plate and screws in my hip need to be removed, but Dr. Mulpuri says it’ll be easy compared to the first surgery.
I often wished that this hadn’t happened to me because I couldn’t dance for a long time, but I’m braver and stronger than before. I’m grateful that Dr. Mulpuri and BC Children’s Hospital gave me to opportunity to dance again (and gave me dissolvable stitches!).
My name is Martina Mladic and when I was 10 years old, I was involved in a three car collision after being rear-ended. I was sitting in the back left seat when the collision happened. I had mild back pain for a year after from the incident before we went to see my family doctor.
He told me I was having muscle aches, prescribed Advil and was told that no additional medication or x-rays were needed. Shortly after that, I developed an aching pain in my left knee which later developed into a limp.
During grade 7, many people (including my teachers) thought I was faking my injury as an excuse to miss school. However, the pain was so unbearable it caused me to have sleepless nights. I went to see my family doctor again but was told that I was only having growing pains and to take more Advil and stop playing sports.
I went to another doctor who measured my legs and found out that one of them was shorter than the other. I was then referred to an orthopaedic surgeon who asked me to walk to the door and back. He said the problem wasn’t my knee, but my hip that was causing the problem.
I had an x-ray done and we soon found out it was actually an incredibly serious situation. We got a call from the BC Children’s Hospital who told us that I shouldn’t walk and to come in immediately. When I arrived I met and spoke with Dr. Mulpuri, who was incredibly approachable and nice.
He showed us my x-ray and we were told that I had a Slipped Capital Femoral Epiphysis (SCFE). Part of my thigh bone had slipped from where it was supposed to be and that was causing pain. He said there were two options, a small surgery that would stabilize the bone in its current position but would mean the bone would stay in a slipped position forever or a larger and riskier surgery to try and move the slipped bone back into place. Even though the riskier surgery had a higher chance infection, blood clots, or even the possibility of causing the bone to die, we decided that we would go with the larger surgery meaning I would need two screws and two pins placed in my hip. It brought tears to me and my family.
My surgery was 5 hours long. I was in a lot of pain afterwards and needed a lot of pain medication. My surgery went well with no complications but I still had to stay in the hospital for three weeks. I had tons of company though; my family, friends, and even nurses would come and play games with me. They all had a huge role in my recovery. I needed to use a wheelchair and then crutches for a long time but I felt overjoyed and free when Dr. Mulpuri said I could start walking again.
At my last appointment, Dr. Mulpuri told us some amazing news, that I was perfectly fine. I will always be grateful to the hospital, the nurses and volunteers, my family and friends, and most of all Dr. Mulpuri for helping me get through this traumatic experience, and giving me another shot, at being a kid again.