For the first time in 8 years, Alia has finally been able to say “Mama.” Alia had been in a coma for nearly 8 years due to a brain tumor that could not be operated on, blocking the brain’s fluid channels and causing hydrocephalus. The only life-supporting tool for her was a small tube (NGT) attached through one of her nostrils down to her stomach. ECCT was the only method that helped her fight the cancer. The progress has been extraordinary, even though it has been very slow.
Alia was finally able to remove the feeding tube, which had been attached to her nose for almost 6 years, and could start eating directly with a spoon.
Her full name is Alia Fadhila. When she was diagnosed with a tumor in the brain’s nerve center in 2016, she was only 9 years old. Initially, she experienced vomiting and dizziness, and her head was larger than average.
The initial diagnosis was hydrocephalus. A CT scan revealed a 7x10x9 cm tumor consisting of multiple nodules. The radiology report suggested it might be either an ependymoma or choroid plexus papilloma.
Since surgery was not an option to remove the tumor, her doctor recommended inserting a VP shunt to help drain the brain fluid causing the hydrocephalus. However, Alia’s parents and family refused. Alia was then cared for at home, relying on a nasogastric tube (NGT) through her nose.
Her condition continued to deteriorate. Alia became unable to see, her arms and legs stiffened, and she frequently experienced seizures, entering a state between consciousness and unconsciousness, a semi-coma.
In March 2017, Alia was brought by her uncle, Kang Rangga, from their home in Bandung to C-Care Cancer Research in Tangerang, where he requested an ECCT device to be made for her. The Medical Physics Consultant advised inserting a brain tube to help drain the brain fluid because fluid buildup would reduce the electrical field strength of the device. Yet, Kang Rangga remained opposed to this.
Eventually, an ECCT device was made for Alia in the form of two types of head-covering helmets.
After three months of using the device, progress was seen, but it was slow. The notable improvement was that her arms and legs became more relaxed and seizures reduced. She experienced significant waste elimination through urination and thick phlegm.
A CT scan after three months of using the device showed that the tumor mass was relatively larger at 9x10x11 cm compared to the CT scan a year earlier. The ECCT device had not yet managed to stop the tumor’s growth.
However, Kang Rangga remained patient in applying the device to his niece. There was no other alternative. He consistently refused any recommendation to insert a brain fluid shunt. Therapy for Alia was only supplemented with snakehead fish albumin extract and coconut water as a body electrolyte replacement.
The time continued to pass, reaching 5 years. Kang Rangga never stopped commuting between Bandung and Tangerang every month for consultations and device checks.
There were improvements in Alia’s condition, though slow. Her head, which had enlarged due to hydrocephalus, started to reduce in size, approaching normal. The seizures gradually disappeared. Her arms and legs could be loosened, and she could be positioned to sit.
A CT scan after 5 years of use showed that the tumor mass had relatively shrunk from 11 cm to 7 cm. Although still sizable, the brain fluid had not reduced. Yet, Kang Rangga still refused to install a brain tube, opting to continue using only the device.
At the start of 2023, after 6 years of use, Kang Rangga shared incredible news: Alia could eat and drink by being fed with a spoon. The feeding tube that had been attached to her nose for over 6 years was finally removed.
Kang Rangga was increasingly hopeful, seeing a glimmer of light after a seemingly endless journey. Alia’s condition continued to improve with the latest device, which was updated based on recent research to aid slow-developing cell types and enhance brain fluid flow. Alia also received a new vest, in addition to the helmet, to help activate her body nerves, which had barely moved for years.
At the beginning of 2024, during a period of positive development, a widespread flu virus outbreak caused coughing and colds. Alia contracted the flu and experienced a critical condition as her oxygen saturation dropped to 60% for two days. However, thankfully, she recovered after being massaged and having her phlegm and mucus suctioned. The vest also helped thin the mucus, making it easier to extract.
Nearly shattering the hopes of those who had cared for her for years, she came back. “Mama,” was the first word she spoke after recovering from her critical condition – the first word she had uttered in 8 years of being in a semi-coma.
Her condition continued to improve after recovering from the cough and cold, which had nearly caused respiratory failure. Her seizures had disappeared for almost six months. Her arms and legs became easier to move, and she spoke more, frequently calling out for her mother and father, and even beginning to cry.
The steadfastness of her parents, who never left her side, and the efforts of her uncle Kang Rangga, who tirelessly traveled back and forth between Bandung and Tangerang, were not in vain. May Alia’s parents and Kang Rangga be granted continued patience in supporting their niece, and may Alia continue to improve until she fully recovers (WS).