Mayelin Valido Tejeda, a Cuban mother from Santa Clara, made an urgent call on social media to save the life of her son, Caleb Aguilera Valido, a baby of only five months who was admitted to intensive care at the José Luis Miranda pediatric hospital.
Caleb was born with hydranencephaly, a rare and devastating brain disorder in which the brain's hemispheres are missing and replaced by cerebrospinal fluid.
“My child needs a drainage system that is used for the external discharges that are not present at this time,” wrote the mother.
It refers to a medical device called external ventricular drain, a type of tube that is surgically inserted to drain excess cerebrospinal fluid from the brain to outside the body, helping to reduce intracranial pressure and prevent further damage.
In Caleb's case, this system needs to be changed every 15 days, but it is not available in Cuba. The baby has been referred since February 12, after tests revealed dangerously high levels of proteins in the cerebrospinal fluid, an indicator of severe complications.
"I have no way to get it… I don't have relatives who can help me financially… I only ask for your assistance with this," expressed Mayelin. The Cuban mother has sought help from churches, non-governmental organizations, and acquaintances but has been unable to find anyone who can send the device.
Hydranencephaly often goes unnoticed at birth, but weeks later, symptoms worsen, causing muscle rigidity, seizures, hydrocephalus, vision problems, paralysis, and neurological deterioration. Life expectancy is low, but Caleb has defied the odds.
"I make this post so that my child, who was only given three days to live and is now five months old, can continue fighting," said this Cuban mother, holding on to faith and solidarity.
This case highlights, once again, the limitations of the Cuban Public Health System in addressing complex conditions. Mayelin concludes her message with a phrase that encapsulates her distress and resilience: “What matters is the life of the child.”
Frequently Asked Questions about the Health Situation in Cuba and Hydranencephaly
What is hydranencephaly and how does it affect babies?
Hydranencephaly is a rare brain disease in which the brain's hemispheres are absent and replaced by cerebrospinal fluid. The symptoms include muscle stiffness, seizures, hydrocephalus, visual problems, paralysis, and neurological degeneration, which significantly reduces life expectancy.
Why is Caleb Aguilera's mother asking for international help?
The mother of Caleb Aguilera is seeking international help because the necessary drainage system for his treatment is not available in Cuba, a medical device called an external ventricular shunt that must be changed every 15 days to drain excess fluid from his brain.
What are the limitations of the Cuban healthcare system according to these cases?
The limitations of the Cuban healthcare system include a lack of medical supplies, specialized equipment, and essential medications, forcing many families to seek help abroad to treat complex conditions that the local healthcare system cannot adequately manage.
How has Cuban civil society responded to the humanitarian crisis affecting children?
The Cuban civil society has responded with solidarity, organizing fundraising campaigns and donations of medical and basic supplies to assist families facing critical situations due to the inefficiency of the state system. This has been crucial in providing hope and relief to those who need it most.
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