The Fight for My Nephew’s Life with Spina Bifida

By Susan A. Akok MPH

When my nephew was diagnosed with Spina Bifida at birth in Nairobi, Kenya, his loving parents knew little to almost nothing about this mysterious ailment. This lack of the underlying condition made it difficult for them or other close family members to seek specialized care, rendering any early interventions out of question and dimmed his future treatments. Innocently, his parents assumed that the condition that he has would disappear or get treated with passing months or even years. Things did not improve and that led them to inform other family members, including myself, their beloved sister.
Upon hearing that the boy’s health was not progressing as expected, I decided to visit Nairobi and made firsthand observations. I was convinced beyond doubt that moving Little Deng to the US would be best. The prospect that he could have face severe challenges, even death, was both tormenting and motivating.
Thanks God that him and his father both flew into Salt Lake City, Utah, on December 22, 2014. His loving family, including grandmother, uncles and aunty were always ready to see his treatment through, with zeal and passion. Treatments meant conducting catheterization by inserting a small tube into his private area four times, every four hours per day, administrating medication twice per day for bladder control infection, watching for hydrocephalus - shunt malfunctions almost every day because it could lead to death if not properly caught on time, checking braces on his feet for any skin redness, adjusting walker and wheelchair, even carrying him around when he struggled, countless Emergency Room (RM) visits, long hours every six months visit to Spina Bifida Clinic, attending constant Physical and Occupation therapist twice per week, and performing bowl movement program every day, every evening.
Little Deng is a blessing to me and our family. As a first-time caregiver, when Little Deng is out for school and other activities, I would be stressed and depressed throughout the day given his condition and how he may do outside there. He is a stronger boy, considering what he faces.
While facing all the challenges, Little Deng is a fighter. He survived spina bifida without any support and hearing from his biological mother for the last six years following his treatments in Utah. This has led him to travel back to Nairobi, Kenya, for family visit and met with his family, especially his two siblings who were born after he has been relocated to Utah. He is also a determined boy and who dreams big against all odds. Although Little Deng knew he might not physically walk, he has a big dream of becoming an NBA star and be the next Donavan Mitchell. This passion brought him to the Utah Jazz Arena where he met face-to-face with Donavan. Received his shoes and got interviewed on NBA All Star. He was enrolled in a Utah Jazz Jr. Wheelchair basketball and summer adaptive program at the Recreation Adoptive Center located in Midvale, Utah. The journey has just begun but fears and worries remind the same. All the same, Little Deng was and remains blessing to our family here in Salt Lake City and in Africa where his biological parents reside.

• Language: English
• Publisher: AuthorHouse
• Release date: Feb 4, 2021
• ISBN: 9781665515429

Susan A. Akok MPH

Susan (Suzie) Akok holds a Master degree in Public Health at Westminster College and a Bachelor of Science in Sociology from the University of Utah located in Salt Lake City, Utah. Suzie hopes to pursue her Ph.D. in Global Health one day. Suzie is originally a refugee from South Sudan and had lived in a number of countries in East Africa, including Ethiopia, Uganda, and Kenya. A U.S citizen, she currently lives in Salt Lake City. As a sojourner and community organizer, Suzie has several experiences in community services. She is currently working at the Utah Public Health Association – Community Health Worker Section as an Outreach and Partnership Coordinator for underserved and underrepresented population in the state of Utah. She has also worked abroad, Nairobi, Kenya and nearby rural areas as a Public Health Outreach Volunteer strengthening Maternal and Child Health Program. Broadly, Suzie is compassionate about making difference in people lives. In this connection, she founded a non-profit organization in 2018 called Refugee Action for Family Health (RAFH). The mission of RAFH is to improve and promote refugees’ community health and well-being through resource mobilization, personnel connection, health education, and cultural preservation and exchange in Salt Lake City, Utah and nearby areas. At the RAFH, Suzie and colleagues envision a family health that improves community health, provides knowledge, provides tools and mobilizes resources, imparts health education, and reduces social isolation that causes depression. During the Novel Coronavirus-19 (COVID-19) pandemic, Suzie has initiated two projects to help refugees’ youth and families fight COVID-19 pandemic. As a result, she has made more than 100 reusable masks to prevent the spread of COVID-19 among refugees’ youth and families. Second, she provided 5 new tables to support youths’ remotely learning so they can successfully complete their homework online without missing any assignments and finally, she reached out to vulnerable households to share information about the virus and where to get help from local resource persons and state agencies.

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© 2021 Susan A. Akok, MPH. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 02/04/2021

ISBN: 978-1-6655-1543-6 (sc)

ISBN: 978-1-6655-1544-3 (hc)

ISBN: 978-1-6655-1542-9 (e)

Library of Congress Control Number: 2021901893

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and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

CONTENTS

Preface

Chapter 1 The Diagnosis in Nairobi, Kenya, East Africa

Chapter 2 Treatment in Salt Lake City, Utah

Chapter 3 Days at School

Chapter 4 Trip to Nairobi, Kenya

Chapter 5 Little Deng’s Love for Basketball

Chapter 6 Spina Bifida and Lessons Learned

Acknowledgements

DEDICATION

This booklet is dedicated to my beautiful mother, Aluel Makuei, and Little Deng, with love and affection.

PREFACE

Seven years ago, I made choice that I would always look back to with pride and sense of modesty. To be precise, it was on October 15, 2013 when I contacted my elder brother, Bobby Akok, in Nairobi, Kenya, East Africa at around 10:00 PM mountain time. It was about 8:00 AM in Nairobi. The main purpose of my call was to request a video showing Little Deng walking. My elder brother Bobby went dead silent for a few minutes, akin to someone thinking hard about what to say next. Bobby paused a little bit on the phone and recollected his thought or courage to share what was unfolding.

He responded with a very low soft worry voice. He stated, my sister, his favorite word, I have to tell you the truth although it may not take away all my worries, but it will set me free. And what exactly is that truth, I said? The truth is that Deng doesn’t walk. What, what, what are you talking about? Has Little Deng not turned one year already? I said in a loud voice. Bobby said, Deng was born with Spina Bifida, a neural birth defect and had a surgery at birth. Unbelievable! I opened my eyes widely with tears wondering about this condition.

For several months, I would wonder every day and night researching about Spina Bifida, potential remedy and Deng’s life in general. I would asked myself million questions such as: is this genetic, and what if his situation worsens, what will happen? Is Nairobi a safe place for his medical treatments? The answers to these questions varied yet the common denominator was to bring him to the United State of America.

After I have resolved to bring him over the US, the next hurdles revolved about how and when he possibly come. I was really so desperate and could spend days speechless. Just like Isaac Newton watching an apple fall and forming his gravitational theory, I truck an idea, and it was my Eureka moment. Oh yeah! I intoned. Bobby is a US citizen and that counts a lot. All we need is a phone call to the immigration office. Fortunately, the United States of America Immigration embassy existed in Nairobi, Kenya. We started the immigration process. Our issues were not far from over. DNA requirements became a stamping block. Damn! Thanks God, it worked, the DNA process took six months to arrive, and Little Deng arrived on December 22, 2014 to Salt Lake City, Utah. On December 29, 2014, his medical treatments began with hope that he would to walk and become healthy.

CHAPTER

1

THE DIAGNOSIS IN NAIROBI,

KENYA, EAST AFRICA

W ho does not like a new family member? None, I suppose. When my nephew Deng Bobby Akok arrived in this world, to our family, we all rejoiced. Little Deng was born in Nairobi Hospital, Kenya. When Little Deng was born, it was like a Christmas for the entity family, our beautiful mother, my five brothers, namely elder brother Bobby Akok (Deng’s father), David Akok, Manny Akok, Moses Akok, and Daniel Akok our youngest born. For our super Mother, Aluel Makuei who has always been our mother and father in our lives, her level of excitement was immeasurable. It was crazy for her because Deng is her first grandson. And you know how that feels to have a grandson. When my sister-in-law was at the Nairobi hospital for labor, man, you should have seen our happy faces. We wished we were all there to attend the birth of Little Prince only to know distance and financial hardship were real. Nonetheless, we were in Nairobi in spirit.

Thank goodness, Deng was born on April 20, 2012 at Nairobi Hospital at 4:00 PM. He was full-term baby. He was a very big child, weighing about 7.94 in pounds. Deng is a very handsome and happy boy looking like a photocopy of his Dad. Although everybody was so happy about his birth, Little Deng was diagnosed with spina bifida, which is a birth defect. Spina bifida comes in different forms and shapes, underscoring there are different types this beast that attacks its victims mercilessly. For Little Deng, for example, he was diagnosed with Myelomeningocele, which is the most severe form of spina bifida. This occurs when the meninges push through the hole in the back, creating a sac-like mass that bulges from the back and the spinal cord also pushes through. He was operated for spina bifida on his lower back at birth. Following that surgery, Little Deng was also diagnosed with hydrocephalus, which was corrected by a ventricular peritoneal shunt. Shunt was surgically placed on his head to drain excessive fluid on his brain. While all those surgeries were successfully, Little Deng was also diagnosed with a Bilateral Telepis Equines Verus (TEV) with score between 9/1 and 10/10. Bobby and Deng’s doctor back in Nairobi thought Deng was well cared of only to know that there was no support on his legs back in Nairobi.

It was over a year and half, and I became curious, wanting to see my nephew walk or crawl. That I could not see Deng’s pictures or videos of him walking was killing me. I wondered what took him so long to walk! On October 15, 2013, I contacted Bobby in Nairobi. I said, hasn’t Little Deng so grown right now…oh my God where did the time go, he must be running all over the house by now. Upon hearing this innocent or unsuspecting excitement, Bobby paused on the phone. I uttered "hello, hello. Bobby