This is an extremely rare disease for which there is currently no cure worldwide. When patients are diagnosed with this condition, doctors can only advise their families to hope for advancements in medicine and then discharge the patient. However, at Children’s Hospital I in Ho Chi Minh City, there has been a case treated for the past five years.
This is the case of a child named T., from Cai Be, Tien Giang. From birth until the age of seven, T. developed normally like any other child. But then, suddenly, the child fell ill, and T.’s body weakened significantly. The family immediately took T. to Children’s Hospital I in Ho Chi Minh City for examination. The doctors diagnosed T. with “cartilage dysplasia.”
Dr. Le Chi Dung, a specialist in orthopedics at Ho Chi Minh City Orthopedic Trauma Hospital, stated that “cartilage dysplasia” is a disorder of bone development. In a healthy individual, cartilage normally produces, allowing bones to become sturdier and the body to grow taller over time. However, when affected by this disease, at some stage, the cartilage stops developing and instead becomes weaker, ultimately losing the ability to support the body, rendering the patient unable to move. This is a very rare congenital condition; in fact, the disease originates in the fetus, but clear symptoms only appear after some time. There is currently no cure for this condition worldwide, and due to its rarity, there is very little research available.
T.’s relatives indicated that there are no family members on either side who have this condition. T. has two older sisters, one 24 years old and the other 22, both of whom have developed normally physically and mentally. Before falling ill, T. was an early school attendee and performed quite well, finishing the second grade by age seven.
When informed that the illness was incurable, the family had no choice but to bring T. home. By the age of eight, T. was walking with difficulty like an elderly person, and if anyone touched her, she would fall immediately. By the age of nine, T. could no longer walk and remained confined to one spot at home. Then, unexpectedly, T. developed severe pneumonia and struggled to breathe, prompting the family to rush her back to Children’s Hospital I. She was hospitalized and placed in the special intensive care unit. Since that day, July 10, 2001, T. has relied on a ventilator to sustain her life and has remained in the intensive care unit ever since. “And this is the record holder for the longest hospitalization to date,” commented one of the treating physicians.
According to Dr. Phan Tu Quy from the special intensive care unit at Children’s Hospital I, apart from the congenital cause, the disease may also be due to mutations or hereditary factors, which cannot be detected before the disease manifests. T.’s case may stem from a congenital condition, as there are no relatives with similar ailments. The life expectancy for such cases depends on the patient’s condition and the level of care provided, making it impossible to predict. However, T.’s case is the longest ongoing treatment to date.
“The disease affects the respiratory muscles, making it impossible for the patient to breathe independently. The doctors can only provide respiratory support, clear secretions, and treat any arising infections to extend T.’s life,” Dr. Quy added.
To maintain T.’s life, every morning, the hospital nurses perform physical therapy to help clear secretions and avoid blockages. They also train T. to breathe using a regular oxygen tube for about two hours to keep her lungs functioning and prevent fibrosis, which is a condition necessary for prolonging life. Afterward, she must rely on the ventilator again. Daily, T. is fed milk and nutritional supplements as prescribed by the doctor through a feeding tube. While she has no sensation of her own movements, her mind remains active.
As of now, T. has been hospitalized for nearly five years and will likely continue in this situation for the foreseeable future. Yet, T. still remembers and accurately counts the time she has been isolated from the outside world. “I’ve been sick for too long; it makes me very sad. Since the day I came here, I haven’t been home. If not, I would be in seventh grade by now. I miss eating braised pork with quail eggs on the first day of Tet, I crave roasted pork with rice vermicelli on the second day, and I’m really looking forward to eating chicken porridge offered on the third day. I want to eat steamed buns with quail eggs, eat meat sandwiches, and I miss my friends so much…” Her eyes sparkle, and she smiles brightly while conversing through her “interpreter,” Aunt Tu, who has cared for her for the past five years. Only Aunt Tu understands what T. is saying and what she wants through her lip movements. Looking at T., no one would guess she is a 14-year-old child, as her face appears pale and innocent due to a lack of sunlight. At seven years old, she was 1 meter tall, and now, after seven years, she remains the same height, with soft and immobile limbs.
Since her parents are busy with work, they have relied on Aunt Tu for care from then until now. Every week, T.’s parents visit on Saturday afternoons and return home on Sundays. “Although she receives careful care, it seems her health is declining,” Aunt Tu explained.
“The hospital has been quite lenient, allowing her to stay here this long. However, if she exceeds the age limit for pediatric care, she will need to be transferred to another hospital or sent home,” one of the treating doctors mentioned. At this point, T. and her family can only hope for advancements in medicine to possibly change their situation…
Vo An
