Nearly 10 years ago, Alex Guerrero made a promise.
“For as long as I live, there will not be one single person in Olancho living with an untreated cleft lip or cleft palate,” he said. “I don’t want anybody to go through what we have been through.”
Every day since, Alex has committed his life to upholding that promise by becoming a bridge between families affected by cleft conditions and Operation Smile Honduras.
Alex helps parents answer the same questions that he found himself asking after seeing his son, César, for the first time.
“At that time, I felt my world was falling apart,” Alex said. “So many questions raised inside me. Is this a punishment from God? Is it my wife’s fault? Do I suffer from some illness? Is he going to die? How do we feed him? Where do we go for help?”
Alex vowed that he would travel any distance to reach patients if it meant he could prevent just one family from enduring the same uncertainty he and his wife, Adilia, felt after seeing César’s cleft lip and palate.
Many years later, Alex still remembers the fear he experienced when his lack of answers resulted in watching César’s condition become dire.
“He got very low in his glucose levels because we could not feed him – to such a degree that he almost went into a vegetative state,” said Alex, his eyes tearing up from the memory. “He lost his mobility and yet no one could tell us what to do.”
Adilia and Alex watched as their son struggled to eat, becoming sicker with each passing day.
“I felt powerless, I was disappointed,” Adilia said. “I felt that my child could die at any moment.”
For almost eight months, Alex and Adilia desperately searched for a solution that could help them. They went to private clinics and government hospitals and drove to all the big cities. One clinic asked for 200,000 lempiras (more than $8,000) for César’s first cleft lip and cleft palate surgeries.
The cost of surgery went well beyond the family’s financial means, and Adilia and Alex soon faced a devastating choice.
“We thought about selling our house, selling the car. It was all we had, it was my family inheritance,” Alex said. “It hurt so much to have to lose it all. And it hurt to see my son dying. I felt I was at a dead end.”
Although Adilia and Alex had heard about Operation Smile Honduras, the family developed deeply rooted mistrust and doubt due to the misinformation being spread about the organization.
A person Alex met during their search for care knew about Operation Smile but told him that he might be charged for the surgeries. Others warned the family that even if surgeries were offered for free, Operation Smile would charge them for blood, supplies and medicine.
Despite the false information they were told, Alex and his wife put aside their apprehension and reached out to the Operation Smile Honduras local team, believing that it might be their last chance to save César’s life.
Along their journey to Tegucigalpa, the lies and fearful warnings continued. A taxi driver cautioned them about Operation Smile, saying the nonprofit stole children’s organs and let medical students practice surgery on patients.
“We came with a lot of fear because everyone spoke very badly of the foundation. They gave us very, very bad information, completely negative.
“As soon as I went through the gates to the Operation Smile Honduras care center in Tegucigalpa, I felt a very different feeling. The staff were kind and treated us with respect. It was like seeing the light at the end of a long tunnel. We realized that all the bad things I had heard about Operation Smile were 100 percent lies,” Alex said.
César received free and safe cleft surgery a few weeks later.
Today, Alex devotes his life to spreading reliable information about Operation Smile Honduras and helping families connect with the local volunteer team. The families who Alex reaches – in addition to gaining awareness of the free food, lodging and transportation provided – discover a skilled and trustworthy team of volunteers committed to caring for their children.
Alex never wants another parent like himself to believe surgery is out of reach.
“A cleft lip and palate surgery for many people is something unattainable, but Operation Smile has come to change the lives of many people,” Alex said.
Years after César’s surgery, Alex continues to visit families like theirs and connect them with Operation Smile Honduras, bringing César along to show them there is hope and there are people out there willing and devoted to help.
Since he began advocating for patients, everyone he meets calls him Don Alex – the use of the honorific Don conveys respect for that person.
Inspired by his personal and dedicated approach to recruiting patients and bringing them to care, Operation Smile Honduras and Don Alex teamed up to create a patient recruitment and advocacy program called Acompañando Sonrisas – “Accompanying Smiles” – aimed at finding the remaining people living with untreated cleft conditions in the country.
In 2018, Acompañando Sonrisas was led by seven parents and adults with personal connections to cleft who were strategically chosen to cover the regions in which they live. Today, the program continues to grow and is now led by 22 patient advocates who foster relationships with potential patients and their families by sharing personal Operation Smile success stories and before and after photos of their own children to show how lives can be changed – or even saved – by safe surgery.
“We are parents who have lived through this experience. We can do this with a little more love, a little more dedication — because we don’t want anyone else to go through what we have gone through,” Don Alex said. “That is why we are so committed, and we hope to bring many, many patients to the center.”
Don Alex and the other passionate patient advocates continue to enhance their patient recruitment process, establishing innovative ways to benefit families across the country.
“If I had a crystal ball to look into the future, I see zero people suffering from cleft lip or cleft palate in the whole country,” Don Alex said. “That is our mission, and I am very confident we are all committed to believe in fulfilling it.”
Prior to the COVID-19 pandemic, Don Alex and his team of patient advocates often brought around 10 to 20 potential patients to Operation Smile Honduras’ care center for evaluation each month. But as country-wide lockdowns and social distancing mandates were established, patient recruitment through the Acompañando Sonrisas program was affected.
“On the bright side, this gave the opportunity for the volunteers to come up with new and creative ideas to keep close to the patients, even during the lockdown,” said Sadia Hernandez, Operation Smile Honduras’ center coordinator of management and logistics. “Video calls, texting and brief visits with social distancing became the new way of keeping connected with their patients and to recruit new ones.”
But Don Alex and his fellow patient advocates didn’t stop there.
Through an alliance Don Alex formed with a transportation company, patients and families will be provided free transportation when traveling to Tegucigalpa for care. In addition to transportation, patient advocates were instrumental in Operation Smile Honduras receiving a donation from the Ministry of Agriculture and Livestock: 40 families were given containers of corn, beans and formula. With the resources to grow the crops on their own land, each family can feed themselves as well as contribute to the well-being of those in their communities.
With food shortages affecting many parts of Central and South America, the need to expand beyond recruitment and awareness efforts became evident to the Acompañando Sonrisas team.
Through making alliances with supermarkets and pharmacies, the team successfully delivered more than 2,000 food baskets and around 1,000 cans of therapeutic milk to patients and their families during some of the most difficult months of the pandemic.
“Up to this moment, even during the pandemic, we were with the patients, supporting and giving them food and milk,” Don Alex said. “The most rewarding part is to help them to get what they’ve always wanted, to recover the noblest gesture: their smile. In my case, it makes me feel very delighted because I can contribute with my grain of sand to accomplish the dream of those who couldn’t smile.”
When asked what motivates him to keep his promise to finding the hardest-to-reach patients and families while also encountering the challenges of COVID-19, Don Alex responded:
“The happiness that my son reflects.
“I’m grateful because Operation Smile opened its doors for my son. So, the only way I can thank Operation Smile for what they’ve done for my kid is by identifying and advocating for more patients. While I live, I will be in the countryside advocating for patients. All the love you give to all patients, there’s no price for that.”
Our promise of improving health and dignity during the COVID-19 pandemic endures. Once again, we’re providing surgery and in-person care while taking stringent measures to keep families safe. Hope is on the horizon. And we remain focused on what cleft care makes possible for children, helping them to better breathe, eat, speak and live with confidence.