After more than 50 days in the intensive care unit, little 5-year-old Sandy Vitoria de Souza has returned home. The girl suffers from hydrocephalus and has been fighting for her life since birth.
The family lives on rent in the Al-Faxinal neighborhood in Mafra Since Sandy's birth, he has devoted 24 hours to her carewhich according to her mother Janina dos Santos, must be extreme.
In addition to hydrocephalus, the girl suffers from Dandy-Walker syndrome and difficult-to-control epilepsy, which requires constant treatment.
At the end of March, the situation worsened when Sandy was admitted to the intensive care unit in Joinville. “This was not the first time she had been in the ICU. Before that, she had been admitted to Mafra Hospital for about a week,” the mother said.
Along with the expected return home came more expenses, the mother says. “Now they have doubled their spending. Milk is expensive, about R$70 every two days. Right now, I haven't been able to get milk through SUS, but I'm trying to find it. She also requires 11 different medications. “Things have become very difficult,” he says.
The fixed cost of Sandy's treatment exceeds R$3,000 per month, the mother said. “This value, excluding unforeseen events, such as unexpected hospital admissions, infections, use of antibiotics and seizures with new medications. There is also the cost of diapers, wet wipes and hygiene products,” Janina explained.
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Mother A. also established Instagram accountWhere he shares Sandy's experiences and her health condition.
What is hydrocephalus and Dandy-Walker syndrome
Dandy-Walker syndrome is a congenital brain malformation involving the cerebellum (an area in the back of the brain that coordinates movement) and the fluid-filled spaces surrounding it.
It is considered a rare condition, with an estimated incidence of one case per 30,000 births.
The main features of this syndrome are enlargement of the fourth ventricle (a small cavity that allows fluid to flow freely between the upper and lower regions of the brain and spinal cord), partial or complete absence of the brain region between the cerebellar hemispheres (cerebellar vermis) and the formation of a cyst near the base of the skull.
There may also be an increase in the size and pressure of fluid spaces around the brain (hydrocephalus).
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