Patient Stories

Natalie

My story begins on November 8, 2002. My name is Natalie Schulze, and I was a “normal” baby: I had a normal set of heart and lungs, normal fingers and toes, normal birthweight- the whole nine yards. Or so I thought. After a healthy, successful delivery, my parents were ready to take me home and show me the world.

The first year of my life went seemingly smooth. Picking my head up, sitting independently, and accomplishing simple infantile stepping stones failed to worry my parents, as they truly believed I was a happy and healthy baby. When I turned three, however, my life began to change for the worse. I began preschool that year, and one day after school, my teacher, with a concerned countenance, quickly approached my mother and told her she had noticed my unique gait. She quickly made the observation that I was walking completely different compared to the other preschoolers. Both my teacher and my mother took a closer look, and they witnessed a waddling motion back and forth every time I took a step. Horrified, my mom immediately notified my father, and they both took me to the hospital to assess and diagnose my bizarre gait. My family and I met with the head surgeon of the hospital’s orthopedic department. I walked back and forth in the exam room, pointed my toes out, and completed the “duck walk”. I then laid down on the exam table as the surgeon moved my entire left leg in a circular motion and felt the way my restricted ball-and-socket joint moved when my leg was in all different positions. My leg was brought towards and away from my chest, left and right, up and down, as it was attempting to complete the ball-and-socket joint’s full range-of-motion. After careful observation, he realized that my left leg was noticeably longer than my right leg, and I was sent to get x-rays done of my left leg and hip for further diagnosis. The x-rays were undoubtedly obvious: the socket of my hip joint did not fully encapsulate the ball part of the joint. The options were discussed to treat this condition, and my doctor and parents together concluded that surgery would be the best option.

A few weeks later, in December of 2005, I was in rolled into the operating room for a five-hour surgery. The ball of my femur was to be moved so it would now be full-intact and encircled by socket joint. Coming out of the surgery and slowly waking up to the sound of crying, I slowly opened my eyes and saw tears streaming down my parents’ face. I was completely terrified. I looked down and suddenly found myself in a full-body cast. I cried and cried. The cast started at my manubrium line, wrapped around the circumference of my torso, leaving both of my arms to move freely. It continued all the way down to my left ankle and my right mid-thigh, tightly wrapped around my body. I obviously couldn’t walk by any means, so I used a wheelchair to move around.

On another note, I had been potty trained for about a year or so before leading up to my major surgery. However, those skills went completely down the drain as my doctor needed to drill a hole through my cast in my genital area, permitting my parents to shove in diapers. I had to tell them whenever I “went potty” so they could take my diaper out and replace it so the cast wouldn’t mold in itself. I still went to preschool with my full-body cast, but while other three-year-olds in my class were able to go to the bathroom by themselves whenever they wanted, completely potty trained, I was fully dependent on my teacher. I began realizing that I was not like my other classmates. I wanted some form of independence- some liberation from my dysplasia that forbade me from developing like everyone else.

Moreover, the cast couldn’t get wet, so showering wasn’t even a possibility. Pardon my hygiene, but there was no possible way I could wash my body without getting my cast wet. The only part of my body I was able to wash was my face and my hair, so every Saturday, my father would take me to our local children’s hair salon. I vividly recall being transferred from my wheelchair to a large table so my hair could be washed by stylist. Although there were painful hardships I had to endure in the short period of time with my cast on, I also remember enjoying certain parts of it, such as getting my hair done, because the stylist delicately intertwined ribbons, flowers, and glitter into my curly blonde hair. Conveying my inner “girly-girl” was definitely a challenge because I couldn’t fit into my pink and purple dresses and skirts over my cast, but seeing my hair done professionally made me channel my true girliness.

To move from place to place, when I wasn’t in my wheelchair, my parents would pull me in a red Radio Flyer wagon that every child owns to wheel their toys around- I was instead using it for an entirely different purpose. For lengthier distances, we had a Nissan Altima, but it could not suit a toddler with her full-body cast and her wheelchair appropriately. We had absolutely no idea how we were going to travel around with our circumstances. We resorted to exchanging cars with our neighbors, because they had a large minivan that could fit my wheelchair in properly. My mother spent her days researching how to safely strap wheelchairs in cars, and she bought a harness to strap the wheelchair to the interior of the car. Thus, regardless if my parents slammed on the brakes, I would be safe in the car. After we figured out the transportation situation, my family finally began adjusting to our new life. We settled into our new routine, which consisted of going to preschool every day, crippled, while my mother had to take care of my six-month-old little sister at home and my father was at work all day. During the weekends, my family would take a walk around Poway Lake. I’ll never forget the moments where my mother rolled my little sister in her stroller while my father pulled me on my Radio Flyer wagon. That image vividly sticks with me today, as I continue to realize the unremitting and unconditional love my family has for each other, even through difficult times in our lives.

Three very long months later, my full-body cast finally came off, and there was an indescribable sense of relief in my family. Fortunately, my surgeon said my full-body cast and my surgery fixed everything. As the cast came off, I discovered an incredibly noticeable six-inch scar running down the lateral side of my left leg. The new, red, raw, and fleshy scar made me nervous because I didn’t want others to judge me and make false assumptions about my competence solely based on my scar. Moreover, my new tan lines stuck out like a sore thumb, and I recall staring at my pale, hairless legs and comparing them to my tan arms. I had completely forgotten what my legs had looked like. It was finally time to try and walk again- something I really took for granted before my dysplasia- and it felt completely foreign. My family still needed to assist me for weeks after my cast came off, but I felt a new sense of independence that I didn’t have for the three months I had my cast on.

After about a year of living a normal life following my surgery and my cast, I could now walk on my own again and I also began soccer and dance. I would regularly visit the hospital to check-up on my hip, but one day, my surgeon notified my parents and asked them to bring me into his office. Confused, we headed to the hospital, and my surgeon revealed that he wanted to perform a second surgery on me. He wanted to view my ball-and-socket joint from another angle (medial as opposed to lateral) to make sure everything was still in place after one year of walking and actively moving. Indeed, my second surgery wasn’t as nerve-wracking, mainly because it was to be shorter as well as minimally invasive compared to my first surgery. Sure enough, a short three hours later, everything went well just as my doctor had hoped. The room was filled with silence as I slowly woke up and came in touch with the environment around me. I suddenly noticed two six-inch scars on my upper left leg, but thankfully, there was no cast on me and no tears flowing down my parents’ face this time. Unlike my first surgery, I was allowed to do whatever I wanted coming out of it, so my first impulse was to eat something. I ordered ice cream just about every hour in the hospital, and my parents complied with my decisions. I think this was the time in my life where I truly discovered my favorite food, ice cream, as it remains my favorite food to this day. Post-surgery ice cream as well as my new battle scars were by far the best part of the whole experience. I proudly show off my three scars now, because they are what make me unique. Although this journey was an intimate and personal experience alone, the unconditional love that my family embraced and expressed towards each other during this time reflect our close bond today. I am utterly thankful for their everlasting support, and I am so grateful to receive an incredible treatment for my condition.

Post-surgery life was comprised of a trial-and-error process to make sure my hip did not regress back into its original condition while completing mundane tasks and physical exercise. We were thoroughly warned before and after my second surgery that these operations do not guarantee a permanent change; many people’s ball-and-socket joints relapse into its original position, so they need surgery to reposition the ball back into its place. I completed two years of physical therapy to strengthen the muscles around the hip area. I remember crying out in excruciating pain, unable to comprehend why my inguinal area was experiencing extreme agony. I couldn’t do physical therapy for the rest of my life, so I needed to find a sport that would best suit my condition. I was prohibited from high impact sports, meaning that any form of running and jumping was out of the question. My doctor recommended swimming- it was a low-impact sport that places an emphasis on cardio and building muscular strength. I complied and joined a local swim team, an extension of the swim school where I had my swimming lessons. I enjoyed lessons when I was younger, but I never imagined that I would participate in swimming as a competitive sport. I joined when I was nine, with an open mind but I had no idea what to expect. At first, I absolutely hated it. I couldn’t plunge myself into the pool, jump off the diving board, or splash around like I could prior to my dysplasia. I cried before going to my swim practices, I didn’t have any friends on the team, and I still had intense hip pain. Nonetheless, my parents pushed and pushed me to continue the sport until I began enjoying it. Not long after, I met fellow swimmers who also went to my elementary school and made friends with them. Now, instead of bawling my eyes out before practices, I asked to go to swim practices. I begged, then cried when I couldn’t go to practice, and before I knew it, my hip began to heal.
It stopped hurting, and I knew that I had found my permanent remedy. With every new day, I loved swimming more and more, and with my passion and determination, I drastically improved my race times during swim competitions. Competitive swimming took up six days a week, two to three hours a day, and even some days, at 5:00 a.m. This sport was now my way of life, and I didn’t want to imagine what my life would be like without it. It quickly became an integral part of my life, and healing my hip was now a minor part of why I loved swimming so much. I continued with swimming because I simply loved and enjoyed it, and healing my hip was a bonus.

I’m incredibly grateful to have created everlasting friendships with my supportive and kind teammates. Aside from the social aspect that the sport offered, I’m proud of my accomplishments: I’m a twelve-time sectionals qualifier, first-tier junior national qualifier, and a member on my high school’s varsity swim team for the last two years. I now teach swimming lessons to people of all ages, regardless of their backgrounds or whether they have disabilities or not. Like my journey, I hope others similar to my condition can devote themselves to something they love. Swimming began as a way to relieve my pain, but it has now become so much more. I not only swim competitively, but I enjoy giving back my time and effort to be a part of someone’s journey, regardless of whether I know what they are going through or not. The emotional, mental, and physical pain that swim has relieved is incredible, and I am so thankful for everyone and everything that this sport has given me.

I refuse to allow my limitations to hinder my ambitions and define who I truly am. I am not only a functioning human being, but I am also a flourishing individual who overcame childhood adversity. The legacy that I will create for myself comprises of the tasks I must accomplish, the challenges I will continue to conquer, and the dreams I aspire to pursue my own happiness. I am more than just my condition. Rather, I believe that my accomplishments, challenges, and dreams define who I truly am.