I was born premature at 27 weeks, weighing 2lbs 5 oz, blue with Apgar scores of 0 and 5. I was not expected to survive and for the first 3 days it was touch and go. I was breech when I came out and had gotten stuck. The OB pulled into the case room was not one familiar to my mother as she had been transferred to another hospital when she went into premature labor, one that had a new NICU and preemie program. This OB panicked and just pulled me out any which way he could to give me a chance at life. I spent nearly 3 months in the NICU and not once was it mentioned that I had an OBPI. No one noticed it as I was such a sick little baby and they were working on just keeping me alive. My mother noticed it when I finally came home and initially the pediatrician dismissed this concern. I had wrist and finger movement but very little or no shoulder movement. My mother noticed that I held my arm “funny”.

Finally at a little over 3 months old I was referred to PT. All they did was examine me, write up a list of ROM to be performed, taught my parents how to do them and that was it! My parents were told that it was too late for any nerve surgery as I was already over 3 months old (back in 1975 they thought that primary surgery had to be done by 3 months old). No other options were given. My mom did the ROM with me and as I got older got me into various activities. I had no overhead movement, nor hand-to-mouth.

Again, I had no formal PT/OT during this time.

In grade seven and eight I was involved in Drama and Band and still loved swimming during the summer. I also spent most of my time riding my bike and hanging out with friends. I added Ballet lessons and continued with figure skating. At the end of grade eight I was starting to feel area more self-conscious about my arm. I wanted to know if anything could be done. My pediatrician sent us to the Shriners Hospital here in Montreal, QC where I live. The surgeon I met told me that he could perform a tendon transfer (latissimus dorsi) and try to improve my ROM, especially external rotation, of which I had none passively. I was told to go home and think about it but I said I didn’t need to think about it, I wanted to do it. I had been thinking about it! It was March and surgery was set for October. So in October of grade nine I had surgery. It was 10 days before my birthday. I had been in PT three days a week from April until that week to build up muscle and as much active ROM as possible. I wore a brace for six weeks and then a sling for another week. It was tough being in High School and getting stared at and people asking questions, but my friends helped me and soon I was “old” news. My teachers were great about it and I left each class 5 minutes early so as not to get run over in the halls and I had a friend help me by carrying my book bag. I also had a friend help me in the bathroom if I wore jeans/pants with a button/zipper. I even managed to learn how to tie shoelaces one handed! My parents were supportive during this time as I would get easily frustrated when I could not do something. They had always been encouraging, even when they were afraid I might hurt myself. Letting me try to do something myself and offering help if I got really frustrated. My mom was always a little more overprotective but realized that NOT letting me try something would not help me in the long run.

Once the brace came off they asked me to try to externally rotated, not really believing I would be able to straight away. I surprised them and did it. I could not understand why they were surprised, after all wasn’t that the goal? I still had no overhead or hand-to-mouth, the shoulder joint is malformed and I am subluxed, they could not do anything about that. I worked hard in PT/OT for the next 3 years. At first I had PT three times a week, as time went by (over the years) the amount decreased. Once the brace came off I was able to go back to my clarinet and Band practice, something I had really missed! I was not able to do skating until the next year, but was able to start Ballet again after Christmas. In grade nine, 10, and 11 I went on Prefect trips, and Band trips to various places in the USA. I was just another high schooler but I just happened to miss classes for PT at times or clinic appointments. I made the honor roll for all 5 yrs of High School and won 2 Scholarship prizes upon graduation along with the Music and French Prizes. In high school I advocated for myself as I was not shy to tell people what I had, nor was I shy about telling teachers about it (PE/Music/Coaches), so the problems I encountered in Elementary school did not exist here. One .Once PE teacher kept trying to make me do certain things that would hurt my arm, I just kept refusing and got a note from both my parents and a doctor. If I had not been outspoken, though, I would have needed and wanted my parents to step in earlier.

As an adult I continued with ballet and figure skating. I competed in skating until I was 28, going as far as Adult Nationals. In 1996 I went to University and and got my BA majoring in Child Studies with a minor in Special Needs and worked as a pre-K teacher with many students being second-language English (I live in a bilingual Province where French and English are both spoken) and others with various Autism spectrum disorders. I also got a degree in TRP and worked as an Athletic Therapist for skating events and my own skating club and have my NCCP Level 1 as a figure skating coach.

In 2004 I was struck with a rare neuroimmunologic disorder called Transverse Myelitis. It affects the spinal cord; essentially it is like having a spinal cord injury. It paralyzed me from the chest down and I had to relearn to sit up, roll over and eventually was able to walk again with the aid a leg brace and cane. I was lucky, though left with some permanent nerve damage; I was able to recover enough to function more or less as I did before. It did not affect my LOBPI, nor did it affect my right side. If it had I would have had a much harder time functioning independently. Since this has happened I am no longer able to skate, coach or work as an AT. I went back to teaching pre-K for a year before deciding to go back to school again, this time in Nursing. From 2005 to 2008 I worked hard for my ADN RN. It was not always easy as some teachers and staff at the hospitals where I did my stages did not always accept my disabilities. A few I won over, others not. I won a scholarship in my 2^nd year and a book prize in 3^rd year. I wrote my board exams in September 2008, got my results in November and I passed with flying colors! So I am now a full RN.