Zulema and Jose thought they had it all planned. They had carefully saved and budgeted the money they earned from their small grocery store outside Buenos Aires. Zulema got pregnant right when the couple was ready. Her many ultrasounds all pointed towards the safe delivery of a perfectly healthy baby. Then when Miguel was born with two splits in his upper lip, “My whole world crumbled to pieces,” as Jose put it.
“I was in shock and cried all day long,” Zulema remembered. “I would not welcome visitors; I would not receive any calls. My relatives would ask for pictures and I refused to send any. I was really distressed because I had never seen anything like this before. I didn’t know where to go, what hospital to take him to…. I couldn’t even think about the future. I was right there in the present, with my baby.”
Fortunately, the hospital staff was able to help calm the family with the facts. They explained that Miguel had a common — and very treatable — birth difference called a cleft. They then made an appointment for the family to see a nearby pediatrician a week after they left the hospital.
The days between the family’s release from the hospital and their pediatrician appointment were long and tense. Zulema cried every time she saw her baby and refused to leave the house. The hospital staff had taught her how to feed Miguel with a syringe, but she was now terrified to touch his feeding tube lest she somehow choke him. But her depression wasn’t nearly as strong as her love for her son. By its light, she navigated through the fog to give him the special care needed to grow healthy and strong.
When the family finally did go their appointment, they didn’t like the care they received, so tried a different doctor. He booked them for an appointment many months in the future, and Zulema knew she and Miguel couldn’t wait that long.
Though Zulema had been trying to hide Miguel, you can’t keep secrets in a small town. Her best hope came not from a doctor, but from the customers at her grocery store. One woman came to tell her about her daughter. She had also been born with a cleft then received all the treatment she needed completely free at a place called Asociación PIEL in Buenos Aires. Others came with similar stories about relatives with clefts who received excellent care at PIEL for free because strangers from around the world made donations to an organization called Smile Train.
Zulema and Jose were skeptical. But when they heard the same story from too many people to doubt it, they rushed to Buenos Aires. From the moment they stepped through the door, Zulema felt “happy, relieved. I finally got to the right place.
The staff at PIEL promptly evaluated Miguel and scheduled his first cleft surgery for when he turned just over four months old. In the meantime, they taught Zulema and Jose how to bottle feed him and provide the care he would need post-surgery.
The family was anxious on the day of surgery, but when Miguel came out of the operating room, “I felt as if he had been born again,” Zulema said. “My son was born twice.”
Though Miguel’s first surgery went a long way towards helping him smile, it wasn’t enough. His cleft palate still made eating difficult and would permanently impair his speech if not treated while he was still a baby. The team at PIEL thought he would be ready for it in about another year. They couldn’t have known that year would bring COVID-19.
In the unprecedented months that followed, Zulema and Jose did everything in their power to protect their son and get him the cleft care he needed. Thanks to their diligence, Miguel stayed healthy and never missed an appointment, whether in-person or virtual. PIEL was diligent, too. The team strictly followed all safety protocols and, with help from Smile Train, quickly pivoted to remote care and stocked up on all the personal protective equipment they needed to help keep their staff, patients, and families safe for when in-person care was the only option. Once the time for Miguel’s surgery finally came in February 2021, both were ready and waiting.
It was a total success.
Today, Miguel is healthy and thriving and his new smile has truly changed everything for his family. “We miss his face before the surgery, honestly,” Jose said. “You get used to the face he had at his birth.”
Zulema agrees. “I got used to that face, and I miss him. I miss him.”
Having experienced the power of community in their time of need, Zulema and Jose are now eager to pass what they’ve learned onto others in their situation. And to give thanks.
“You need to keep fighting, searching for information about clefts. And you have to feel safe with your surgeon,” said Zulema.
“Thank you, Smile Train. Thanks to you, we can enjoy our son and he can live a healthy life.”
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