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Abdiel was born premature and with a heart murmur. He managed to survive in an incubator without anyone being able to rock him with his body entangled in the cables that kept him alive, cradled only by the sighs of his mother for eight long days. Over time he began to eat, to gain weight. “But when we tried to get his attention, he kept looking up, he didn’t look for the toys,” says his mother, Miriam Leyva.
When he was four months old, his parents took him to the pediatrician for a check-up. They explained to them that Abdiel could only distinguish light from darkness, “he couldn’t see lumps,” says the mother, originally from a town four hours from Chihuahua, in northern Mexico. The first diagnosis was cataracts, the second he announced that his child would never see. Abdiel would go blind because he had had a retinal detachment. The layer of eye tissue that perceives light and then sends images to the brain had been torn, and the baby’s world was blurred, colorless.
It is estimated that in Mexico there are 145,000 blind children. “And 70% of them are due to a problem that can be treated,” explains Ana Maria Martinez, a pediatric retina surgeon, a specialty that is scarce in the region. “We are very few professionals throughout the country and none of us work in a public institution,” she affirms.
The data mentioned by the doctor are supported by numerous official studies. According to the Pan American Health Organization (PAHO), blindness and visual impairment “can be prevented in approximately 80% of people.” It is a condition that is usually linked to a lack of resources and access to health services. For this reason, it is “almost four times more frequent in poor and illiterate people who live in marginalized and rural areas than in rich neighborhoods,” says PAHO.
There are various factors behind visual loss, but retinopathy of prematurity is the leading cause of childhood blindness in Latin America. The earlier the baby is and the lower his weight, the greater the risk of developing this defect. “Because the little eyes are not yet ready to go outside,” explains the surgeon.
Most of the patients born with this defect had treatment alternatives that could have prevented blindness in the early stages of their condition, but were not diagnosed at the time due to lack of compliance with protocols and medical negligence. “And when they reach the hands of professionals, it is usually too late,” says the specialist, used to seeing mothers like Abdiel’s, who were not informed in time that her baby had an eye problem.
“In the hospital they didn’t tell me anything about his sight, and now I carry the guilt,” laments Leyva. During her pregnancy, the gynecologist asked her to wait to give birth. “But I had horrendous pain under my belly that wouldn’t go away, I couldn’t stand it. And my first girl had also been premature without problems”, says this mother of three.
A review in time to save sight
Astrid was also born prematurely, at six months gestation, weighing just over one kilo and 37 centimeters tall. “I was in intensive care and I couldn’t see her when she came out,” says Diana Garcia, who took a week to meet her little girl. “I suffer from chronic renal failure. They had to take the baby out beforehand because my kidneys are small, if my belly grew bigger neither of us were going to survive. That’s what the doctors told me, ”she explains.
The girl was born on February 28 at the Toluca Children’s Hospital, but she did not leave there until May 17 due to many complications: she had reflux, bronchopulmonary dysplasia, lack of oxygen, and anemia that attacked her defenses. “From her little eyes they didn’t check it for me,” says Garcia, who realized that something was not right in the look of her girl when she already had her at home. “She would put a pendant close to her face and she wouldn’t listen to it,” she details. The baby was only chasing the sunlight, the beam of the flashlight with which her mother illuminated her gaze. So, her mother took her to a pediatrician who referred her to an ophthalmology specialist, but it took more than six months to make an appointment.
In the first consultation, the little girl was given the same misdiagnosis as Abdiel: cataracts. Garcia then took her girl to the Hospital de la Ceguera Pediatric Retina Unit in the Mexican capital, the only center that has such an area in all of Latin America. There she underwent studies and was diagnosed with retinal detachment. “That’s why nothing else perceives light,” the doctor told them.
When she was about to be operated on, Astrid had an acute crisis of her own. “She suffers from her lungs. She can’t stand the cold and she gets sick often, ”says her mother. The operation that was going to restore the girl’s vision was lengthening due to the fragility of her health. When her parents were able to return with her to her office, a year had already passed: too long, her retina had completely detached and nothing could be done. That’s what they told him.
“It is very sad because it should not have happened. That is why early detection is vital, you have to act quickly. And our National Health System does not have the infrastructure to offer a complete study of retinal diseases in pediatric patients”, explains Martinez. In Mexico, only 20% of hospitals carry out visual screening, according to the Hospital de la Ceguera. There are also no efficient programs for the early detection of vision loss. “And many times not even doctors have the training to make a good diagnosis,” explains the surgeon who carries out campaigns to prevent childhood retinopathy throughout Latin America.
For Astrid’s mother, her daughter has gone blind due to medical negligence. “If she had come to relieve me at a private hospital, perhaps they would have detected her there in time. And that hurts. I didn’t go private because it was very expensive, and maybe my daughter’s life would be different”, she affirms. Now her daughter, whom she defines as “very independent” is already 3 years old. “I don’t overprotect her because I’m not going to be with her forever and I want her to fend for herself,” she says.
They also did not detect retinopathy in time for Mareli, who was born in Zihuatanejo (Guerrero) with 1.4 kilos. “We had to rush her to an emergency hospital in Acapulco,” says her mother, Elisabeth, as she waits for a consultation with the baby in her arms at the private clinic in Toluca. “My girl was detected with retinal detachment at the social security a month after she was born, but since they didn’t give us an appointment to check her out, we came here, more than 11 hours by car. My husband has not been able to work for 20 days, but the first thing is that Mareli can see”, says the woman from Guerrero.
The lives of so many blind children could have been different if they had been screened for eye disease, an exam within the first four weeks of life to detect eye disease. “A review that the Mexican standard requires,” denounces Miriam Ortega, a pediatric ophthalmologist. By law, all babies born before 30 weeks of gestation, weighing less than 1.5 kilos that are high risk, should be examined for defects such as retinal detachment, common in premature babies. “But they don’t tend to do this type of exam on children at risk of suffering it either,” accuses the oculoplastic ophthalmologist, whose professional activity alternates between a public hospital and private practice in the State of Hidalgo. “There are no official campaigns to prevent, to detect in time, when something could still be done,” she says.
For this reason, eye diseases and visual deficiencies do not affect all people equally. “It is a very marked problem in low-income families,” says surgeon Martinez, for whom there is “a clear problem of equity in access to the prevention of childhood blindness.” Parents of children with visual problems, in addition to adapting their lives to this condition, must make great financial sacrifices to access diagnoses, operations or travel to a specialized clinic.
Families often have to seek help outside the public system, as did the mother of Abdiel, Astrid and Mareli, who contacted the group of surgeons from the clinic specializing in retinal diseases of premature infants, babies and children in Toluca, where Martinez attends the clinic. “Perhaps my daughter can still improve her eyesight a bit,” says Garcia, who maintains hope in an operation, in a pioneering treatment that will reduce her daughter’s disability. Her dream is that she “gets to see something, even if it is shapes”. That would be for Astrid more, much more, than just differentiating between light and dark.