Nicole Irene Cleveland - The Butterfly Chronicles: A Journey of Finding Gods Purpose Living with A Rare Genetic Disorder

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Copyright 2022 by Nicole Cleveland

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Library of Congress Cataloging-in-Publication Data is available.

ISBN 978-1-68556-448-3

ISBN 978-1-68556-449-0 (ebook)

Dedication

I dedicate this book to my family, who from day one has been on this journey with me and has made numerous sacrifices so I could live the most normal and fulfilling life. I love each one of you, and this story is as much yours as it is mine.

To my fellow Turner syndrome butterflies, this is for you as well. I hope you will read this book and feel empowered to go out and achieve your goals. I also hope that you will see yourself in this story and feel understood.

Chapter 1

Navigating the Unknown

Mr. and Mrs. Cleveland, we are going to have to perform an emergency delivery. Your babys heart rate is dangerously high, and the baby is in fetal distress.

With those words, my mom was rushed into surgery for an emergency C-section. I was delivered shortly after on March 14, 1985. I was rushed to the NICU at St Lukes Hospital in Sioux City, Iowa. Neither my mom nor dad got to hold me. All they could keep asking after being told they had a daughter was Is she going to be ok? What should have been one of the happiest days of my parents lives was suddenly turned in to a parents worst nightmare. All my parents could do was lean on their faith and pray with their family and friends for support.

After a few days in the NICU. I suffered from jaundice, racing heart rate, and my hands and feet were swollen; the doctors knew something profoundly serious was causing these issues and my parents were in search for answers. The test results that they were given raised more questions than answers. After getting no answers, a doctor from the Childrens Medical Center in Omaha, Nebraska was called in to perform a test called the karyotype. It is a test that does a snapshot of your genes, and it checks for abnormalities. Along with this test, several others were performed. A few days later, my parents were informed that the karyotype results showed abnormalities.

I was diagnosed with the rare genetic disorder known as Turner syndrome. This is a rare genetic disorder that 1 in 2000 females have. It is in fact so rare that only one percent of women who are pregnant with a child with Turner syndrome will ever make it to full term. It could affect several major organs such as the heart and kidneys. It may also cause delayed motor skills development, hearing loss, vision loss, and learning disabilities. In almost all cases it causes infertility and below average height.

All this and more were laid out by specialist before my parents could even absorb the news that they would have to raise a child with special needs, and they were not even sure of what those needs would even be. What would their daughters future even look like? Just days before, my parents were preparing and just hoping for a happy and healthy baby, overjoyed to be adding to their growing family. Now, they were dealt a hand they were not sure how to play. All they could do was lean on God for strength and guidance; they would often lean on the words of Isaiah 41:10, So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Thinking the worst and hoping for the best, my parents sought out the best medical experts and care Iowa had to offer, and a few months later my parents began to get a clearer picture of how this disorder of would affect me and what challenges would lie ahead. Not to say they were given all the answers but at least there was more insight and at least that was a starting point.

They were told I had mosaic Turner syndrome, a mild form of Turner syndrome and that I would begin to show the symptoms of it as I developed and grew. They were told it was a chromosome disorder that some of my X chromosomes were missing or deformed. The average girl should have forty-six xx chromosomes; I had forty-five normal chromosomes. My parents were told I may have to wear braces on my legs as I might not be able to walk normally. On top of this, speaking could be difficult for me. They were told to visit a genetic counselor who specialized in rare genetic disorders such as mine.

A genetic counselor is someone who helps families adjust to the challenges of being diagnosed with birth defects, disorders and other inherited conditions.

The months following my birth my parents began to find a routine, well as much of a routine one could have with a four-year-old son and an infant daughter. My mom stayed home and took care of my brother and I until I started school. She would have a small in-home daycare and would take care of the children in the neighborhood. My dad had an excellent job in town as the Community Schools Transportation Director and was luckily a short drive away if they needed to take me to the doctor. That happened often as my immune system was compromised because of living with Turner syndrome. Even the common cold would turn into ear infections and high fevers. That first year, I put my parents through some major scares and was in and out of the ER many times.

My parents told me that one time I was running such a high fever that my eyes rolled in the back of my head, and I became limp in my dads arms. My parents rushed me to the ER, and it turned out to be a severe ear infection. By the time I was two, I had so many ear infections that I needed tubes in my ear and would have hearing loss as a result.

My parents begin to see the signs of my disorder within the first year. It took me longer to learn to walk than they hoped, and at times it was a struggle. Luckily though, I did not need those braces the specialist thought I would need and was able to walk normally on my own. This would be the first of many times I would defy the odds in my life. I however soon began to show the signs of delayed motor skills the doctors warned my parents about.

My parents had a specialist visit our home to work on the development of my motor skills. They worked with my hand and eye coordination. I began to show the physical signs of the disorder as I was growing at a below normal rate. That was expected as it was the most common physical feature of those with Turner syndrome. It was clear that medical intervention would someday be needed to achieve a normal adult height. It was also clear that several specialists would be needed throughout my life.