Life Is Short (No Pun Intended) by Jennifer Arnold [Paperback]

Description: Life Is Short (No Pun Intended) CHAPTER ONE Jen My Arrival! WHEN I WAS YOUNG, just beginning to be Ã¢ÂÂme,Ã¢ÂÂI wasnÃ¢ÂÂt unhappy being a Little Person. Being a Little Person has always been and will always be normal to me. For me, it wasnÃ¢ÂÂt like an accident occurred where my physical or mental capabilities changed. But I didnÃ¢ÂÂt have time to feel that way. My parents always reminded me to count my blessings and be grateful for the things that were good in my life and that it could always be worse.My birth, my big arrival, happened on March 12, 1974, at St. AnthonyÃ¢ÂÂs Hospital in St. Petersburg, Florida, and was nothing short of harrowing. My mother was expecting a completely healthy baby, as she had had an uneventful pregnancy. My parents, David and Judy Arnold, were young, just twenty-one, and completely overjoyed to be having their first child. However, the difficulties started immediately in the delivery room. By the time I finally emerged, she was haemorrhaging, I wasnÃ¢ÂÂt breathing, and both of us almost died. Although doctors knew something was terribly wrong with me right away, nobody knew exactly what it was. My parents were told I had Ã¢ÂÂwater on the brainÃ¢ÂÂ or hydrocephalus, which had all sorts of terrifying neurological implications. It turns out that it wasnÃ¢ÂÂt hydrocephalus at all, but rather hydrops. Hydrops is a condition in which fluid or edoema accumulates in multiple body parts of a newborn. This is a rare condition, but a known complication for babies born with dwarfism. AnthonyÃ¢ÂÂs Hospital long enough for an intensive care neonatal transport vehicle to race there, sirens blaring, snatch me out of the delivery room, and rush me to All ChildrenÃ¢ÂÂs Hospital several miles away. Here was the best neonatal intensive care unit (NICU) in St. PetersburgÃ¢ÂÂin fact, one of the best NICUs in all of southwest Florida. My mother didnÃ¢ÂÂt even have a chance to lay eyes on me before they took me away. She was still so out of it from all the anaesthesia and pain medications they had given her that she didnÃ¢ÂÂt even know what was happening. She had lost so much blood that she needed two transfusions and a week in the hospital to recover. I recall my mom telling me that although she didnÃ¢ÂÂt get to see me for some time, her parents, my grandmother and Papa, had seen me and kept telling her not to listen to the doctors. Before she got there, she had heard so many terrifying terms to describe my condition, she had no idea what to expect. No matter how many issues the doctors enumerated and described, she didnÃ¢ÂÂt fear bonding with me. She totally loved me and only loved me that much more when she finally saw me.My mom had a strong faith that God would take care of her small family, as He had never presented her with an impossible situation or guided her wrong before. In fact, to this day, she credits her faith with getting her through my birth, which undercut the happiest day of her life with extraordinary, terrifying unknowns. Her motherly instincts kicked in with a vengeance, and she instantly became my protector, advocate, and supporter with everything she had.My mother was not shy about expressing that at first glance she and my father were not the ideal parents for me. They were young, practically broke, and very naÃÂ¯ve. But, they got through it all with strength and perseverance. The doctors were throwing out all kinds of diagnoses, but, through no fault of their own, they didnÃ¢ÂÂt hit on skeletal dysplasia. It was not a well-known diagnosis and often it can be difficult to see the physical features of skeletal dysplasia soon after birth. The neonatologists were still concerned about the hydrops, though they hoped it would resolve on its own.ÃÂ Ã¢ÂÂ¢ÃÂ Ã¢ÂÂ¢ÃÂ Ã¢ÂÂ¢ They had met at a Winn-Dixie supermarket in St. Petersburg, where my mother was a part-time cashier and my father was a manager. My father had a crush on my mother from the moment he saw her, but the feeling wasnÃ¢ÂÂt, at least at first, mutual. When he learned she loved horses enough to save all her paychecks to buy one, he capitalised on their common interest. He loved horses, too, having been raised around them. When he heard about my motherÃ¢ÂÂs purchase, he knew the perfect giftÃ¢ÂÂa bridle. She was so impressed that he had tuned in to her interest that the romance budded immediately.When my mother became pregnant, my parents moved into a little apartment in my maternal grandparentsÃ¢ÂÂ house in St. Petersburg. My grandfather, aka Papa, had converted the two-car garage of the house into a cosy apartment for them. My grandparents wanted my mother nearby, and with the baby coming, there was the added benefit of a houseful of people who could help them outÃ¢ÂÂbesides my grandmother, my motherÃ¢ÂÂs two younger sisters, my aunts Barbara and Chrissy, still lived at home. Barbara was sixteen, five years younger than Mom, and Chrissy was eleven. My uncle Wayne, who was just finishing high school at the time, also lived there.My mother set up a beautiful nursery for me in the corner of the apartment, with the nicest crib she could buy and a wardrobe full of pink onesies and bonnets. She did her absolute best not to be too consumed with the state of my future health.My trips to the paediatrician were far more frequent than those of newborns without issues. Very concerned with my body mass, the paediatricians diagnosed me as Ã¢ÂÂfailing to thrive.Ã¢ÂÂ They thought maybe it was a nutrition issue, plain and simpleÃ¢ÂÂthat my mom wasnÃ¢ÂÂt feeding me enough, which is not unusual for a first-time mother. She tried so hard to make me eat more, she was beside herself! Because no one had diagnosed me with a form of dwarfism, they didnÃ¢ÂÂt realise that nutrition and food quantity was never an issue. My condition was rare, and the paediatricians were only going through a process of elimination, but they had my mother frantic.Then came the next stressor. Right before my first birthday, we moved to a small rental apartment in Orlando, a hundred miles from St. Petersburg, after my father accepted a job from my motherÃ¢ÂÂs uncle. He was going to be managing a string of gas stations in the boomtown. My aunt Barbara, with her parentsÃ¢ÂÂ permission, moved with us and stayed a year.The Walt Disney World Resort had just opened, although it was so small and new that there were only three operating hotels on its whole forty square miles. However, because of the resort, the city was already the hottest, hippest town in Florida. My mother got a part-time job waitressing at the Fort Wilderness area inside the park. Fort Wilderness was a vacation spot within Disney World with rustic cabins and campsites featuring a Wild West theme. My mom had to dress the part of a cowgirl, but she didnÃ¢ÂÂt mind. She made many friends working there that she might not have met otherwise.The first thing my parents did after the move was find a new paediatrician. Without knowing anyone with kids to give them references, they took a chance with Paediatrics Associates of Orlando, a group practise not too far from our neighbourhood. By the purest stroke of luck, the doctor in the group who saw me first was Dr. Colin Condron, who turned out to be the link to determining my diagnosis. He had done his paediatric training at Johns Hopkins Hospital in Baltimore, Maryland, which was the finest paediatric orthopaedic unit in the country, with specialised clinics for genetic-based issues, including dwarfism. He told my mother he wanted her to take me to the Moore Clinic, a genetics clinic, as he thought they could confirm my diagnosis. He also arranged to have all our travel expenses paid for by the hospital by enrolling me as a participant in a study currently underway. Back then it wasnÃ¢ÂÂt unusual for academic hospitals to admit a patient with a rare or unusual diagnosis for evaluation. What good fortune to have on my case Dr. Victor A. McKusick, a professor of medicine and medical genetics at Johns Hopkins Hospital with a reputation around the world for his expertise in unusual hereditary diseases! He is often referred to as the father of clinical genetics and was the original author of Mendelian Inheritance in Man, the most extensive database of all inheritable diseases.SED is a type of skeletal dysplasia that involves significant skeletal abnormalities affecting the spine, long bones, and joints. What the diagnosis meant for me was a childhood filled with orthopaedic surgeries just to maintain mobility. SED is characterised by anomalies of the growth plates, joints, and spine, resulting in debilitating deformities such a scoliosis, knock knee, early osteoarthritis and joint degradation in your twenties, and other major joint problems. SED is rare, occurring in only about one in one hundred thousand births. Although it can be passed down from an abnormal gene from one parent, the majority of cases result from spontaneous mutations. Unfortunately, it turned out my case was quite severe, and Dr. McKusick said IÃ¢ÂÂd need many surgeries.The fact that Dr. Of course, once Dr. Condron got me to the Moore Clinic, my parents also got to meet someone who would forever change our lives, Steven E. Kopits, MD. Dr. Kopits would become my orthopaedic surgeon and my lifesaver. At the time we met him, Dr. Kopits was the chief resident of paediatric orthopaedics at Johns Hopkins Hospital, a position he cherished. He was from a long line of orthopaedic physicians, as both his father and grandfather were orthopaedic surgeons in Hungary, his native country. After World War II, the Kopits family left Hungary and settled in Argentina, where my Dr. Kopits got his medical degree at the Universidad de Buenos Aires. He then came to the United States, doing his internship at Union Memorial Hospital in Baltimore and his residency at Johns Hopkins Hospital. It was then and there that his interest in patients with skeletal dysplasias was born. Not only was he a talented and dedicated physician and surgeon, but he also invented procedures no one had ever tried before that often led to lifesaving treatments for children with skeletal dysplasias. He was somehow able to see a patientÃ¢ÂÂs deformity and tailor a surgical procedure to make what was not functional before work. There were times when Dr. Kopits would come out of the operating room and tell a patientÃ¢ÂÂs parents that he used a technique he had never used before during the operation, but ta-da, it worked, and he expected outstanding results!Dr. Kopits hadnÃ¢ÂÂt always been a specialist in dwarfism. However, because Johns Hopkins had such a large patient population with genetic illnesses, he found himself working with many genetic-based orthopaedic problems, and his passion soon became the skeletal deformities of dwarfism. He had told me that it was evident to him that this was a unique patient population with unique issues, which no one had yet taken an interest in caring for.Dr. Kopits was certifiably a hero, a miracle maker, to each and every Little Person who had the pleasure of being his patient. We all considered him a beloved friend and a true member of our families.According to my mother, that first trip to Johns Hopkins Hospital and the Moore Clinic was much more traumatic for her than for me. She had absolutely no idea what to expect, and two weeks seemed like forever, so she was in a whirlwind of fear. On the one hand, she was relieved to have gotten a diagnosis for me, but she was equally overwhelmed by that diagnosis. One of the genetic specialists gave her an informational pamphlet about the size of a comic book that was filled with black-and-white photos of different people with my condition. The picture pages showed the severe orthopaedic complications and deformities of children and adults. It was enough to scare her to death.Dr. It was clear it wasnÃ¢ÂÂt going to be easy. It was probably the biggest surgery IÃ¢ÂÂd ever have, a cervical spine fusion on account of the instability in my spine. These two are the highest on the spine, right behind the skull, and when they are as unstable as mine were, any significant fall or jolt to oneÃ¢ÂÂs head or back could cause paralysis, or worse. The fusion essentially turned those two vertebrae into a solid piece. The surgery involved taking bone from my hip to use as the Ã¢ÂÂglueÃ¢ÂÂ for the fusion itself. Then, my spine was carefully manipulated and aligned to Dr. KopitsÃ¢ÂÂs satisfaction. Next, he secured my head and neck by placing me in a halo. A halo is a contraption that holds your neck stable after surgery while you heal. It involved four metal screws bolted into the four corners of my skull affixed with a circular metal ring around my headÃ¢ÂÂwhere the name halo comes fromÃ¢ÂÂwith bars that went down from the halo and attached to a belt-like fixture anchored at my waist. Even though all this had been explained to my mother beforehand, and she thought she knew what to expect, she still fainted when she first got sight of me in the recovery room. This would turn out to be a recurrent thing for my mom, so much so that Dr. Kopits started carrying smelling salts every time he met my mom in the recovery room.My mom had to take me home in the halo to heal for about twelve weeks, which wasnÃ¢ÂÂt easy for her first experience of surgery for me. She made the best of it. She could grab me by the bar anchored to the belt at my waist. However, I have come to realise that things donÃ¢ÂÂt always go smoothly, or as you hope, in these situations. I had come down with some sort of bad cold, which in itself wasnÃ¢ÂÂt the problem. The crisis began when my mom was at work, and my dad and Papa, who was visiting from St. Petersburg, were at home with me and Dad tried to give me a dose of cold medicine.My mother got a desperate call from my dad to get home immediately, if not faster. When she busted through the front door and into the living room, she found my dad and Papa standing rock-stiff on either side of me, looking terrified, not daring to move a muscle as they held my head in place.Ã¢ÂÂWhat the heck is holding her head going to do. We need to secure her head!Ã¢ÂÂ my mom yelled as she ran to grab towels to stabilise my head within the halo and then to the phone to call 911.My first memory ever is of riding in the back of the ambulance that came for me. Only one of them could go with me, so my dad offered to go, and my mom followed in her car. I still remember the wordsÃ¢ÂÂÃ¢ÂÂthe flying lion stops the crying.Ã¢ÂÂ He sang it all the way to the hospital in an effort to calm me down.My dad was always the creative one, with a great imagination, whether or not there was an emergency. He loved creating stories and tales to make me feel better, and his plan usually worked. The Ã¢ÂÂflying lion,Ã¢ÂÂ made famous in the ambulance, became so special that my dad would later use him as a character in stories that became a full series.My mom was always the tough one, always getting the job done. Their roles were complementary and equally important. My mom was already anxiously pacing the emergency room of Orlando Regional Medical Centre when the paramedics raced me in on the stretcher. An adult orthopaedic surgeon, Dr. Johnson, met us there. At that time, he had never seen this type of halo before, let alone a head halo that was displaced and semidangling. He and his staff began trying to communicate with Dr. KopitsÃ¢ÂÂs office at Johns Hopkins Hospital. When they were told he was in South America and not reachable (this was the era before cell phones), the situation became increasingly intense. Johnson tried to reach Dr. Kopits to get instructions on how to replace the halo. Dr. Johnson didnÃ¢ÂÂt want to just react without speaking to Dr. Kopits.However, my parents really wanted to wait for Dr. Kopits, confident somebody would reach him. The last thing they wanted was for someone not familiar with the halo to mess things up and paralyse me forever. They had been warned that this was a possibility. Kopits. Dr. Johnson announced he and his team were going to have to take me into surgery to try to reset the halo. As terrified as my parents were, they agreed to go ahead.Just as the surgical team was prepping me for the OR, into the waiting area walked Dr. Kopits! My mother and father practically fainted at the sight of him, breaking down in tears and thanking God for a miracle.According to Dr. Kopits, intuition told him he needed to call his office, and when he followed his instinct and checked in with the office in Baltimore, he heard what was going on with me in Florida. He went straight to the airport, caught the next flight to Miami, and then drove the three hours to Orlando at ninety miles an hour in a rental car. What made the story even more exceptional was that he was in South America to receive an honour for his orthopaedic work back where he had trained, and he left right in the middle of the dinner to take care of me before he could even receive his award.After he arrived at the hospital, Dr. Kopits spoke briefly with Dr. Johnson, and soon he was scrubbed and ready to accompany him into the OR. The whole thing made my mom a firm believer in Dr. KopitsÃ¢ÂÂs dedication to his patients. With Dr. KopitsÃ¢ÂÂs direction, the halo was resecured. As he left, Dr. Kopits hugged both my parents and said to my mom, Ã¢ÂÂLittle mother, I am going to teach you how to care for the screws so this doesnÃ¢ÂÂt happen again.Ã¢ÂÂ Dr. Kopits taught my mom how to tighten the screws in my halo, which had to be done every couple of days, and we never had another Ã¢ÂÂhalo emergencyÃ¢ÂÂ again.The most unbelievable part of that whole story is that Dr. Kopits never charged my parents for any of it. Kopits travelling across the country to care for one of his patients, and always without charge. It would be followed by numerous osteotomies on my hips, knees, and ankles. These osteotomies were corrective surgical procedures in which bones were broken in order to realign my deformities. My primary nurse at this surgery was named Donna, and she became one of our closest friends. At each yearly checkup in Baltimore with Dr. Kopits, he would tell me if this would be a year for one surgery or two, as he would often do two at once. Of most concern to him were my knock knees and the fact that my femurs were growing at different rates, causing severe deformities that, if not corrected, might not be fixable down the line and would make me unable to walk. My knock-knee legs made it extremely difficult for me to keep up. Walking long distances was difficult, so IÃ¢ÂÂ

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