The survival of Francis (+photos) – Escambray

“We are here for 21 days and nine at home. We live longer in Hospitalito than in Caja de Agua and I thank doctors Anaisa and Redelio and everyone who has kept my son alive since he was practically 32 days old.”

From the face worn by hours of shocks and bad sleep, the gratitude of the Sancti Spiritus mother Ismaday Real Reyes flows. His son Francis Rodríguez is 17 years old and for more than half of his life he has been admitted to the José Martí Pérez Provincial Pediatric Hospital. Science and affection have made him survive all this time from cystic fibrosis (CF), a serious hereditary disease that requires close and multidisciplinary monitoring.

OF DIAGNOSES AND CERTAINTY

Those vomiting and diarrhea, those constant dehydrations, that growing abdominal hernia gave Ismaday a bad feeling, who one morning, as soon as the light revealed the dusty embankment, he walked the 4 kilometers that separate Caja de Agua from Tuinucú, municipality of Taguasco. The medical diagnosis confirmed, some time later, that the mother’s hunches were true.

Dr. Anaisa Marín Acosta, a first-degree specialist in Pediatrics and today head of the Pediatric Respiratory Service, knows Francis’ medical history inside out.

“We received him here when he was still an infant, very ill, with a giant abdominal hernia, which we were able to operate on at around six years of age. However, first the serious digestive disorders he had had to be stabilized. It was a very risky operation; It lasted around four hours, but there were no complications, the anesthetic risk was little and we fought that battle, then we had to face other no less difficult ones.

“From the beginning,” Anaisa continues, “the child presented vomiting, diarrhea, and severe dehydration; all of this associated with a significant nutritional compromise, with marked protein-energy malnutrition. Then, respiratory symptoms appeared and suspicions of cystic fibrosis were greater until the diagnosis was confirmed at two years of age. From then on, there were multiple admissions due to exacerbations of the condition with symptoms that were no longer digestive, but pulmonary.”

Due to the environmental conditions where the patient resides, namely exposure to dust and the smell of sulfur coming from the Sergio Soto refinery in Cabaiguán, in addition to the complications inherent to the condition, Francis’ stay at the Provincial Pediatric Hospital has been almost permanent. for 17 years.

“I almost always come from Muda to the Hospitalito, because the longest the child can last at home is nine days. We live in Caja de Agua, a very intricate place, very cold, with a lot of dust from the embankment, and all of that hurts the child a lot,” says the mother.

“I dedicate myself exclusively to taking care of my son, it is impossible for me to work and I depend on the little that my husband plants to be able to eat and support us.”

And given that situation, have you processed your case with Social Assistance?, he asks. Escambray.

“When he was little they gave me a checkbook. I no longer have it, they took it away a while ago due to the issue of the readjustments that were made. After that, I have gone to the Government with the summaries of the medical history so that they can evaluate my case so that they can at least give me a gas quota; They still haven’t given me a response. I do not have social assistance of any kind.

“As I tell you this, I tell you that, I am grateful to the doctors and nurses at this hospital for having my son alive. He has not missed a single day of medication. And when one is scarce, variants are sought; If there is not one type, another is sought. “This is my other family,” highlights Ismaday.

SAVE WITH MEDICINE AND AFFECTIONS

In Sancti Spíritus, 11 children with CF are included in the National Comprehensive Care Program for patients with this condition, which according to medical literature, is a genetic disease of autosomal recessive inheritance, that is, the mother and father carry the gene that the cause; but they don’t suffer from it.

This disease mainly affects the lungs and, to a lesser extent, the pancreas, liver and intestine; Its treatment requires antibiotics, enzymes and multiple admissions due to the difficult management of the condition.

The care for these patients is multidisciplinary – says Dr. Anaisa Marín, head of the Provincial CF Commission – and the follow-up consultation is made up of pediatricians, gastroenterologists, nutritionists, pulmonologists, microbiologists and nursing staff.

“In recent years in Cuba,” it means, “the diagnosis is made to the baby on the fifth day after birth, through taking a blood sample obtained from the heel. “This test contributes to an earlier diagnosis and a better prognosis for patients.”

Despite the economic shortcomings that exist today in the country, these patients have a differentiated diet and one hundred percent of the medications they require, most of which are highly expensive, are guaranteed; even if this means overcoming all the barriers imposed by the blockade.

During the last few days – says the specialist – it has become difficult, for example, to have pancreatin available, an essential drug for these children. Even so, alternatives have been sought so as not to affect the treatment of these patients.

In 17 years, how many threads of sensitivity will have had to be woven to keep your child alive??, he finally asks Escambray to Francis’s grateful mother.

“Imagine, I had not even finished being born and my son was already admitted here. There are many years of struggle with him and a lot of generosity that is impossible to forget. At the time of his giant abdominal hernia operation, Dr. Anaisa was on call. She came ahead of time and went to the living room with him, and until she finished, when she saw him breathing and everything was fine, she did not leave for his house. There is no money to pay for that.”