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Patient Story Malawi

A Reflection of Hope

Patient Story Malawi

A Reflection of Hope

Four-year-old Ziyalesi, before surgery. Photo: Margherita Mirabella.

As they grow up, some children become curious about what their smiles would look like if they weren’t born with a cleft condition. 

Ziyalesi didn’t have to wonder. 

All she needed to do was look at her twin sister, Rutia.  

Rutia not only represented what Ziyalesi’s smile could be, but also the potential of how differently people in her community might treat her. 

But unfortunately, her reality was more painful.

Photo: Margherita Mirabella.

With the cost of surgery beyond her family’s means, a new smile seemed to be an impossibility, and Ziyalesi endured the harmful stigma and isolation that can come with living with an untreated cleft condition. 

She was oftentimes tormented by people on the streets whenever she left the safety of her home. Even the bullying she endured from her classmates sometimes went beyond verbal insults – Ziyalesi was also occasionally physically abused. 

Seeing her daughter come home from school in tears was heartbreaking for Angela, Ziyalesi’s mom. To a certain extent, she understood her daughter’s pain, as she and her husband, Samuel, were also on the receiving end of their community's torment and oppression.  

When Ziyalesi was born with a cleft condition, Samuel and Angela believed they were being punished. Rather than providing the family with support or solace, their community mocked and taunted them. 

Lacking access to knowledge of the causes and treatment of cleft conditions, Angela believed that her daughter’s cleft condition would eventually heal on its own.

But, of course, it never did.

Photo: Margherita Mirabella.

When Samuel and Angela were informed that surgery was available to help Ziyalesi, they were thrilled. But their excitement was soon lost when they learned how much it would cost the family to pay for surgery.

Yet, amidst the seemingly unending uncertainty and pain, Ziyalesi could always turn to the support and compassion of her sister. One day, Rutia and Ziyalesi hoped that they would look just alike.

Everything changed when Angela saw a poster for Operation Smile Malawi. Filled with relief, Angela read about how the organization had teams of medical volunteers capable of providing free life-changing surgery. 

In 2015, Ziyalesi and her family traveled more than 70 miles from their home to reach Operation Smile Malawi's surgical program in Lilongwe where she was screened by volunteer anesthesiologist Dr. Ian Osborne of South Africa. Photo: Margherita Mirabella.

Operation Smile made travel arrangements for Ziyalesi and her mother to reach Lilongwe, where the surgical program would take place. 

Following their long journey, Angela felt reassured as she glanced around and saw other children who looked like Ziyalesi. 

For the first time, they felt like they weren’t alone. 

During her time at Operation Smile Malawi's surgical program, Ziyalesi met other children her age who were also born with cleft conditions. Photo: Margherita Mirabella.

Ziyalesi and Angela met with the compassionate volunteers at the program site who conducted a comprehensive medical evaluation and determined that she was a candidate for surgery. 

After a cleft lip surgery, a procedure that can take as few as 45 minutes, the course of Ziyalesi’s life was changed forever. 

Ziyalesi, one year after cleft surgery. Photo: Margherita Mirabella.

“I am so happy because they won’t tease her anymore,” Angela said.

As she looked into the mirror after receiving surgery, Ziyalesi saw the new and beautiful smile she would have for the rest of her life.

She smiled and said, “Now I look like my sister, Rutia.”  

Today, Ziyalesi lives a happier life, free of the burdens associated with cleft conditions, and is no longer bullied by those who misunderstood her condition.

Following the family’s return home, many members of their community never expected to see such a drastic change to Ziyalesi’s smile. Some shared how they felt ashamed by the things they said and how they had treated the family.

One of the many people who was most excited to see Ziyalesi was Rutia, who said, “We have a new Ziyalesi now.” 

Photo: Margherita Mirabella.

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.

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