Mayelin Valido Tejeda, a mother from Santa Clara, Cuba, has issued an urgent plea on social media to save her son, Caleb Aguilera Valido. Caleb, just five months old, is currently in intensive care at the José Luis Miranda pediatric hospital.
Caleb was born with hydranencephaly, a rare and devastating brain condition where the cerebral hemispheres are absent and replaced by cerebrospinal fluid. "My child needs a drainage system used for external shunts that is unavailable at the moment," the mother wrote.
She is referring to a medical device known as an external ventricular shunt, a tube surgically inserted to drain excess cerebrospinal fluid from the brain to the outside of the body. This helps reduce intracranial pressure and prevent further damage. Caleb's condition requires this system to be changed every 15 days, but it is not accessible in Cuba. Since February 12, Caleb has been reliant on this system after tests revealed dangerously high protein levels in his cerebrospinal fluid, indicating severe complications.
"I have no means to obtain it... I have no family with the financial capacity to assist me... I'm just asking for help with this," Mayelin expressed. Despite reaching out to churches, non-governmental organizations, and acquaintances, no one has been able to provide the necessary device.
Hydranencephaly often goes unnoticed at birth, but symptoms worsen in the following weeks, leading to muscle stiffness, seizures, hydrocephalus, visual problems, paralysis, and neurological decline. While the life expectancy is typically low, Caleb has defied the odds.
"I'm making this post so my child, who was only given three days to live and is now five months old, can continue fighting," said the Cuban mother, holding onto faith and solidarity.
This situation highlights, yet again, the shortcomings of Cuba's Public Health System in handling complex medical conditions. Mayelin concludes her message with a phrase that sums up her distress and determination: "The important thing is the child's life."
Challenges Faced by Cuban Healthcare in Treating Rare Conditions
What condition does Caleb Aguilera Valido have?
Caleb Aguilera Valido was born with hydranencephaly, a rare brain condition where the brain's cerebral hemispheres are absent and replaced by cerebrospinal fluid.
What medical device does Caleb need?
Caleb needs an external ventricular shunt, a device that helps drain excess cerebrospinal fluid from the brain to reduce pressure and prevent further complications.
Why is the device unavailable in Cuba?
The external ventricular shunt is not available in Cuba due to limitations in the healthcare system and the country's inability to provide certain medical supplies.