The surgery that allowed Elsa to see the world at age five

Barcelona"Mom, I see the sun, I see an airplane, I see that building far away, the trees have leaves..." Elsa described in the car. The little girl was five years old at the time, but it was the first time she could see the world around her. Her mother, Roser Caro, explains that the child was born with corneal hypoplasia, a malformation that prevented her from having any sensation and from blinking. This caused her to progressively lose her vision, until she was left with only 10% of her sight. In January 2024, when she was five years old, the San Juan de Dios Hospital in Barcelona performed a pioneering pediatric operation on her, which not only prevented her from going completely blind but also allowed her to recover 10% of her vision.

Elsa was born with a maldevelopment of the trigeminal nerve, responsible for sensation in the face, but this was initially unknown. Caro noticed right away that something was wrong with her daughter. "She didn't have a sucking reflex. When I told the pediatrician, she attributed it to the hypoglycemia [low blood sugar] she suffered at birth, for which they had to administer a lot of glucose," she explains in an interview with EFE. Once the abnormal glucose level dropped, however, the baby still wouldn't breastfeed. My mother noticed other warning signs, such as how she tended to bump into everything when she walked, and how if she fell she would hit her face because she didn't put her hands out to break her fall. But the final warning sign was a small accident: the baby sprayed air freshener in her eyes and didn't react. She didn't cry. Nor did she cry when they put drops in her eyes, which cause a lot of itching, in the hospital's emergency room. "The ophthalmologist told us that wasn't normal, that there must have been a problem," she recalls. The cause was that her eyes couldn't blink to protect themselves from external things or stay moist. “She had to leave the house wearing swimming goggles to protect herself from the wind in winter, and we couldn’t go to the beach to avoid getting sand in her eyes,” explains Caro. She also had to wear special goggles, called wet chamber goggles, and lubricate them every hour with artificial tears and ointments.

It was in 2023 when an MRI revealed that Elsa suffered from bilateral corneal insensitivity. At that time, the experts refused to perform a classic neurotization, which involves using a healthy nerve from the face and redirecting it to the cornea to compensate for the action of the damaged nerve and restore its function. The reason: the two possible nerves—the supraorbital or the supratrochlear—are branches of the trigeminal nerve, and in Elsa’s case, it was severely malformed. Her mother didn’t give up and sought other opinions, until the San Juan de Dios Hospital proposed an innovative technique. Elsa underwent a groundbreaking corneal neurotization operation in the state two years ago.

A nerve in the leg

In a six-hour operation, surgeons removed a segment of the sural nerve, located in her leg, and spliced it to connect with the greater auricular nerve, located behind her ear, with the aim of restoring sensation to the cornea in her right eye. "This procedure required the use of microsurgical techniques, which, in the case of children, always present a challenge due to the smaller size of all the tissues," explains Marisa Manzano, a plastic surgeon in the Pediatric Surgery Department at San Juan de Dios Hospital. "The doctors told us that the results, if any, would take months to appear. But, after four months, when they put the eye drops in, she felt a cold sensation. And a year later, she was already experiencing pain," Elsa's mother explains. "Neural plasticity in children promotes and facilitates a better recovery than in adults," Manzano adds. She will soon undergo surgery on her left eye as well, a procedure that, when performed two years ago, was the first of its kind in Spain for a child. "Elsa can now participate in daily activities with greater independence and without the constant need for strict eye protection, although she still requires continuous and constant care from an adult," explains her mother, who lives in Pla de Santa Maria, a town in the province of Tarragona. The girl still has to wear protective glasses and scleral contact lenses—larger than conventional lenses and specially designed for people with corneal problems because they are held in place by the sclera, the white part of the eye—but thanks to them, she has recovered between 60% and 70% of her vision. The girl can lead a practically normal life. While she must use eye drops frequently, she has fewer lesions and no longer needs continuous medical attention. The family has gone from going to the emergency room every week to going twice a year. "He was also struck by seeing ants and the moon for the first time," Caro describes.