Refer Report
Da-eun (pseudonym, 8)’s world is like ‘underwater’. Her breathing is rapid as if she is submerged in water, and the world she sees is whitish, as if mixed with floating objects. Since her left ear’s auditory nerve is underdeveloped, the sounds she hears also buzz like underwater. For young Da-eun, living on land like underwater is something that requires all her strength. Since she focuses on breathing, she collapses and has to take a nap if she moves even a little. She cannot breathe and swallow at the same time, so she gasps for breath even after just one spoonful of baby food. When we met Da-eun in Gyeongsan, Gyeongsangbuk-do on the 30th of last month, her fingertips and toes were purple (cyanotic). This is because her heart, which circulates blood throughout her body, is not functioning properly.
A large hole in the middle of the heart… “as if it were underwater”
Atrial septal defect, tetralogy of Fallot, charge syndrome, visual impairment, hearing impairment, intellectual disability, brain lesion. Da-eun suffers from several diseases with unfamiliar names. Among them, the one that affects Da-eun’s ‘breath’ is heart disease. It was discovered when Da-eun was 7 months old while she was growing in the womb. The doctor said, ‘The heart sound is abnormal.’ The disease that was discovered after a detailed diagnosis was ‘tetralogy of Fallot.’ It is a congenital heart disease with four lesions that causes symptoms such as respiratory distress, cyanosis, and anoxic seizures. It accounts for 10% of all congenital heart diseases, but in Da-eun’s case, after she was born, she was found to have a cardiac septal defect in which a hole in the wall between the right and left atrium causes blood to leak.
In the center of Da-eun’s small body, a surgical scar of over 10cm is clearly visible. It was a struggle to regain her breath. Da-eun underwent emergency surgery three days after birth. It was a surgery to create an artificial blood vessel that helps blood flow from the heart to the lungs. After the first surgery, Da-eun’s oxygen saturation level was around 60% (normal level 95-100%). As the doctor said at the time, she was “not alive, but submerged in water,” enduring each day. She couldn’t even breastfeed, so she had a tube inserted into her nose to receive nutrients. She underwent a second surgery a year later. If the first surgery was an emergency treatment, the second surgery was a full-scale heart surgery aimed at correction. The surgery was close to failure. The hospital explained, “Let’s try a third surgery when the baby grows bigger.” Although her oxygen saturation level has now risen to 80%, Da-eun still has difficulty breathing as if she were in a high-altitude area. Da-eun will undergo her third heart surgery as early as this year.
Disability after heart disease: “It’s like the sky is falling”
For Da-eun, who cannot see or hear properly, her mother is her only window to the world and everything she cannot leave behind. The same goes for her mother. Da-eun’s mother (33) looks after Da-eun’s small body and expressions all day long, “as if she were raising a newborn.” Whenever she sees Da-eun swallowing and exhaling hard, she thinks of the difficult moments they went through together.
Around 100 days after birth, Da-eun was diagnosed with both heart disease and Chaji syndrome. Chaji syndrome is a rare disease in which malformations that occurred during fetal development appear in multiple organs, and it is accompanied by eye tissue defects, brain nerve abnormalities, heart defects, growth and development delays, ear abnormalities, and hearing loss. “Until then, I had endured each day with the hope that ‘heart disease can be cured with surgery,’ but when I heard that Da-eun would have to live with another disability, it felt like the sky was falling.”
Chaji Syndrome has also affected Da-eun’s growth and development. Da-eun still wears diapers and rides in a stroller. After a long period of rehabilitation, she finally started walking a year ago, but she still needs her mother to hold her hands in front of her or use a walker to walk for about 5 minutes. She has difficulty using her chewing muscles and tongue, so she mostly eats baby food. She is 106cm tall and weighs 16.5kg, which is the level of a 4-5 year old. She needs to weigh at least 15kg for her third heart surgery, but she only just got over that weight this year.
Da-eun’s favorite place is the daycare center for infants and toddlers that she has been attending since she was 3 years old. Since it is a daycare center for non-disabled children, she can only go there once or twice a week (for 2 hours a day), but it is the only time for her mother to catch her breath. On the days when she goes to daycare, Da-eun is filled with happiness, but her mother says that her heart aches when she sees her. “Maybe it’s Da-eun’s last chance to socialize with non-disabled people.”
“Worried about the cost of surgery” in front of hospital
Da-eun’s mother is not receiving child support due to her divorced ex-husband’s circumstances, and is solely responsible for living expenses and child care costs. Thinking that she had to make money somehow, she started a beauty-related job in 2021. She could not leave Da-eun’s side, so she ran the shop by appointment only for 3 hours a day. The money she earned that way was about 500,000 won a month. She closed the shop in less than 2 years. After that, she tried to make money through part-time jobs, but it was difficult to do it while taking care of Da-eun. Currently, she is covering her living expenses and Da-eun’s treatment with livelihood benefits, housing benefits, child allowances, and single-parent family allowances (totaling 1.5 million won) provided by the government.
It is tight and overwhelming. There are at least seven types of treatment that are absolutely necessary (and affect the prognosis of surgery), including exercise therapy to help Da-eun walk, occupational therapy to help her use small muscles such as her finger muscles, and swallowing therapy to stimulate her mouth so she can chew food. Even if you use the disability voucher, it costs about 500,000 won per month.
She also has to get regular checkups at a large hospital in Seoul once every 1 to 3 months. Since she suffers from many diseases and disabilities, there are many departments that Da-eun has to get regular checkups for. At least once every 3 months, she goes to a large hospital in Seoul to get checkups in the departments of cardiology, cardiac surgery, gastroenterology, otolaryngology, ophthalmology, neurology, genetics, and rehabilitation medicine. The checkup fee is between 80,000 and 500,000 won, but it changes every time she goes. Her mother is always ‘super nervous’ in front of the hospital’s payment window.
Above all, the third surgery that may save Da-eun’s life is approaching. The third heart surgery, which will be decided after examination in December of this year, is both a hope and a worry for her mother. This is because the cost of the surgery is unknown. “I understand that the cost of childbirth, surgery, and treatment for the first surgery was 90 million won, and the second surgery was also about 10 million won. At least we need to prevent people from not being able to have surgery because of money…” Between hope and anxiety, the mother could not continue speaking.
Taking a step forward… “This appearance itself is special”
In the face of harsh reality, the mother said that she gained strength by watching Da-eun take each step. ‘Exercise therapy’, which builds up the strength to walk, is the most difficult treatment for Da-eun. She has difficulty breathing, and her forehead and hair become soaked with sweat after walking just a few steps. After the treatment, she falls into a nap as if she has passed out. However, the mother braces herself by watching Da-eun struggle to take each step without giving up.
When asked, “When does Da-eun look the most special?”, the mother stared at Da-eun sitting on her lap for a long time. Then she said, “Just the way she is right now.” The mother said that she had seen countless children go to ‘heaven’ while in the ward with Da-eun. Da-eun had overcome many crises. Before she was one year old, she had been to the intensive care unit three times, a place that even adults only visit once in their lives. One day after her second surgery, her heart rate exceeded 200 and she almost passed out in front of her mother. Da-eun survived all those threats and is now eight years old. She never lost her smile. “I think Da-eun is a child with a strong will to live. Looking back, Da-eun smiled a lot even when she was in a lot of pain. If Da-eun could understand what I said, I would tell her this. Thank you for enduring so well until now, and let’s overcome it together in the future.”
To participate in the campaign
If you would like to help Da-eun’s family, you can send your donation to the account below. (Hana Bank 188-910030-69104, Account holder: Milal Welfare Foundation) If you would like to support in another way, please contact Milal Welfare Foundation (1600-0966). After you participate in the donation, you can receive a donation receipt by contacting Milal Welfare Foundation. The fundraising goal is 15 million won. The donation will be used for Da-eun’s family’s outpatient treatment costs and emergency living expenses. If we raise more than 15 million won, it will be provided to disabled children like Da-eun who need a helping hand. Milal Welfare Foundation will continue to monitor Da-eun’s family and deliver the donations transparently and faithfully.
After the report
After the story of 3-year-old Harin, who is suffering from the aftereffects of pediatric brain death, was introduced through the ‘Sharing Flower Campaign’ by Hankyoreh and the Korean Red Cross (Hankyoreh, August 5, page 14), 488 people donated 21,861,211 won (as of August 30) along with messages of support such as “Cheer up, Harin” and “Another miracle.” The Korean Red Cross said, “We will continue to monitor and help Harin receive the treatment she needs and live a stable life, and we ask that you also show interest in other children in crisis families like Harin.” The donations will be used to cover Harin’s medical expenses, such as hospitalization and developmental treatment to prevent further brain damage, as well as the living expenses of Harin’s family, who are struggling to make ends meet due to the aftereffects of her father’s accident. We would like to express our sincere gratitude to all of the sponsors who have sent their warm hearts to Harin’s family.
Reporter Park Go-eun euni@hani.co.kr
Source: Korean