Surgery days came quickly each time. Born with scoliosis, Jeong-eun (13) underwent surgery twice a year to keep up with her spinal growth. This has been going on for ten years. Having wondered if the end would ever come, the final surgery day that she had imagined hundreds of times finally arrived. Jeong-eun expressed how she felt by sharing a message she would have given to herself ten years ago when she had just started her surgeries, “You will undergo surgeries for a long time, and people may not look at you kindly, and you will feel very lonely. However, it will be more bearable than you think, and not as difficult. You will meet good people in the hospital, so let's endure these ten years well!”

Every Moment a Challenge

Professor Chang Ju Hwang of the Department of Orthopedic Surgery at Asan Medical Center displayed Jeong-eun’s early examination images on the monitor. “Her spine was already at a 60-degree angle when she was not even a year old. It was clearly severe scoliosis to anyone who saw it.” While the shape of her spine was one problem, it could lead to breathing difficulties or lung failure, posing a life-threatening risk. However, there was no treatment available in South Korea at the time. The medical team sought a device to connect the ribs and spine, preserving growth while correcting the curvature, and invited the American professor who developed it. Additionally, they convinced the Ministry of Health and Welfare and the Health Insurance Review and Assessment Service (HIRA) of the need for surgery. After around a year of preparation, three-year-old Jeong-eun underwent the first VEPTR (Vertical Expandable Prosthetic Titanium Rib) surgery in South Korea.

However, this surgery was just the beginning. Every six months, she had to undergo surgery with continued equipment maintenance and replacement. The device easily dislodged because her bones were too weak. Her spine often got stuck, causing the body to lose balance. “As a medical professional, every moment was a challenge. Things did not go as expected in each surgery, and we had to find solutions. We had to remove one whole vertebra completely in the final surgery.” Even though pain was inevitable for treatment, Professor Hwang felt sorry for how much Jeong-eun would suffer from it. Nevertheless, she was always cheerful whenever they met. “I was grateful and proud of her. I was determined to see the treatment through and always prayed that she would be able to endure the treatment. Jeong-eun was a special patient to me.”

Time Needed for Mom

Jeong-eun’s mother found out about the fetal issues during pregnancy. She cried a lot as she underwent various tests. “Come to think of it now, it was all unnecessary. I was not going to give up on the child because of disability anyway.” Her hope that things might improve after giving birth and raising Jeong-eun fell apart every day. As Jeong-eun’s spine became increasingly curved, she walked on tiptoes, and her gaze skewed. Orthosis showed no treatment effect. “I once called Nurse Specialist Mi Young Lee crying, ‘What did I do wrong to give birth to such a sick child?’ She told me to stay strong because it was not my fault. Her words gave me great courage.”

After the medical team’s persistent efforts, they got a chance for surgery to be performed for the first time in South Korea. Jeong-eun’s mother felt joy for the opportunity and fear for beginning the long treatment ahead at the same time. She did not know how to explain the surgery to her daughter, who was only four years old. “Jeong-eun, you are going to ride on a spaceship with the doctor!” When Jeong-eun readily boarded the spacecraft and fell into a deep sleep, the medical team fixed two devices to her spine, curved in an S-shape. Her mother waited without drinking a drop of water until the surgery was over.

It was not as if Jeong-eun could grow taller or straighten her spine overnight. Her mother dressed her in fancy, large dresses to hide her figure and held or carried her around all the time. “One day, I suddenly realized that the more I was self-conscious, the more Jeong-eun would be intimidated. It struck me, ‘What am I doing?’ It took me about five years to come to terms with my daughter’s illness. When I say, ‘I am sorry for having you born sick,’ Jeong-eun would say, ‘I am even more sorry for being born sick.’ I could come this far thanks to Jeong-eun.”

Growing Pains of Sorrow and Fear

“Of course, I wish I could run.” During physical education classes, all Jeong-eun could do was sit on the bench and watch her classmates. She had to miss out on all field trips because she could not walk long hours. She even envied the evacuation drills, which were disliked by other students. Every new school year brought questions like “Are you disabled?” or “Do you have a terminal illness?” Each time, she would swallow hard and cry at home. It took several new school years before she could answer confidently. “I am not terminally ill, and I do not have an incurable disease. It is something I will recover from, like a bad cold!”

However, she could never get used to the pain after surgery. Waking from anesthesia and receiving painkillers gave her nausea and pain. When her mother asked, “Are you okay?” she sometimes snapped, “How can I be okay?” Although her mother said she could stop the surgeries if they were too difficult, she felt even more upset because she knew she had no choice if she wanted to straighten her spine and grow taller. As surgery days approached, so did the nightmares. She would crawl into her parents’ bed in the middle of the night, crying, “Mom. I died in my dream. What if I do not wake up after surgery?” “I will be waiting outside the operating room. Neither of us is going anywhere! So, let’s just trust Professor Hwang, okay?”

Eagerly Awaited Graduation

After her final surgery last November, Jeong-eun rested for three months. Having been told countless times that her bones were too weak and she should not overdo herself, she felt uneasy about taking off the orthosis. However, her spine stood quite straight, and she no longer had to tiptoe. “If the surgery site heals well, there will be no additional surgery or treatment. You have done a great job, Jeong-eun. Let’s graduate from this!” Professor Hwang’s declaration stunned her. Her mother was already in tears. “Our joy today is thanks to you for giving Jeong-eun the chance to have surgery!”

On her long-awaited return to school, Jeong-eun encountered a male student who exclaimed, “Wow, I have not seen you for a while, and your back is so straight! How amazing!” Her teachers also quickly noted her change. Now, you can join physical education class!” Jeong-eun told her mother about everyone’s congratulations. She did not say aloud, ‘I am so happy right now!’ but her mother seemed to know how Jeong-eun felt.