Lilia’s story

Throughout the Covid-19 pandemic, health systems in developed countries were pushed to their limits while the healthcare inequities in low- and middle-income countries became further exposed.

The communities that were already vulnerable were hit hardest by the virus. Access to help was limited, personal protective equipment was scarce, and the already-restricted capacity of healthcare systems were overwhelmed with patients.

But, throughout these times of uncertainty and fear arose stories of people around the world who, despite all odds, found a way to persevere in the face of so much adversity.

As a 27-year-old nursery school teacher, Valeria’s entire world was turned upside down when the pandemic forced the closure of schools across Mexico.

Expecting the birth of her first child, Valeria suddenly found herself without a job and without financial means to help support her family. While still attempting to navigate through those challenges, Valeria was once again faced with the unexpected.

“When I was eight months pregnant, they told me,” Valeria explained. “It was clear that she had a cleft lip on the right side.”

Though consumed with a mixture of shock and guilt, Valeria and her husband, Daniel, refused to give up and soon began preparing for their daughter Lilia’s birth.

Sadly, Daniel would never get the chance to meet his daughter. He tragically passed away just before Lilia was born. “If my husband were here, I would tell him that we will come out of this together, that we stand by my daughter, that we need to be strong,” Valeria said. “When I had her in my belly, he used to say that she is daddy’s princess.”

It took all of Valeria’s strength to persevere through the seemingly endless list of hardships that she faced, but she was determined to overcome any obstacle for Lilia, who would be born soon.

“I had to give it all for my daughter,” Valeria said.

Lilia and her mother, Valeria. Photo: Henry Cuicas
Mum holds daughter, with cleft lip and cleft palate
Photo: Henry Cuicas
Lilia in clinic 2021. Photo: Henry Cuicas
Mum and daughter sharing a smile. Photo: Henry Cuicas

The local hospital’s Covid-19 restrictions prevented visitors from being in the delivery room. So, when it was time to deliver her baby, Valeria was alone.

Although Valeria knew that her daughter would be born with a cleft condition, she was still in shock when she saw Lilia’s smile for the first time. Initially, Valeria blamed herself for Lilia’s cleft condition. Questions and doubt swarmed her thoughts. Had she not taken proper care of herself? Maybe it was something she ate.

Valeria knew that Lilia would need surgery to repair her cleft condition, but since she was born in the peak of the pandemic in June 2020, many medical procedures, including cleft surgeries, were on hold in Mexico for the foreseeable future.

What Valeria wanted most was to give Lilia a happy life; however, with the challenges of the pandemic, her dream for her daughter seemed out of reach. But soon, with the help of her sister, Valeria discovered Operation Smile Mexico.

It was after connecting with the organisation that Valeria not only learned she wasn’t at fault for her daughter’s cleft lip, but that the local volunteer team would provide Lilia with ongoing comprehensive care until it was safe to resume surgeries.

Due to Lilia being born with a cleft lip and palate, feeding was an exceptionally difficult task during her first month of life. Dr. Daniel Zunzunegui, a volunteer dentist for Operation Smile Mexico, fit Lilia with a feeding plate. Molded to the roof of a baby’s mouth, the plates serve as a first step toward surgery, leading patients like Lilia away from starvation and malnutrition.

Learning that Lilia wouldn’t have to live with her cleft condition motivated Valeria. From her first appointment with Operation Smile Mexico, Valeria knew this organisation would support her and her daughter.

After months of Valeria feeling alone and discouraged, the Operation Smile Mexico team offered safety, hope and stability in her pursuit of surgery for Lilia.

While the pandemic made it temporarily unsafe to provide surgery, the local team in Mexico worked tirelessly to provide care, including speech therapy, throughout the pandemic and began seeing patients on a limited scale toward the end of 2020. “Virtual speech therapies are a tool we had to develop due to the pandemic to reach the patients who need these therapies,” said Elidé Romero, Operation Smile Mexico volunteer speech therapist.

For patients like Lilia who are born with a cleft lip and palate, speech therapy before and after surgery is a vital component of comprehensive care. Even before they begin to form words.

Speech therapists provide children like Lilia with palate-strengthening exercises and techniques to help improve the surgical outcome.

But the work before surgery is just as important as receiving continuous care afterward. Their ongoing speech therapy care helps patients speak more clearly as they grow.

“Lilia’s main improvements include, one, reducing the risk of having a development gap,” Elidé said. “On the other hand, we teach mums how to interact with their babies in a way that’s enriching for the babies’ speech and complete development.”

Valeria made sure that Lilia never missed an appointment or therapy session.

“The speech therapy support is very impressive. My daughter has progressed well,” Valeria said. “I have seen a change in my daughter during the therapies. She does many little things like babbling, moving around, screaming, playing. Things she almost didn’t do at all before.”

She no longer has the sadness she felt at the beginning.

Valeria

As the world began to adjust to the new reality posed by Covid-19, Operation Smile Mexico began to resume surgical programmes.

When it became safe to do so, volunteers resumed delivering surgery to families like Valeria’s who hadn’t been able to access the timely surgical care they needed and deserved.

With strict Covid-19 protocols in place to ensure the safety of all volunteers, staff and patients, Operation Smile Mexico hosted a surgical programme in Puebla in March 2021.

“When I saw the other families with their babies with cleft conditions, I thought, ‘I’m not the only one. There are more families besides me.’”

After a comprehensive medical evaluation, Valeria was told that 9-month-old Lilia would be receiving surgery the next day.

“Honestly, I didn’t expect it,” Valeria said with tears in her eyes. “I thank God because I asked for it a lot. I have gone through a lot since my daughter was born.”

Having a child with a cleft condition is often a scary experience – especially for a first-time parent.

This fear was compounded for Valeria because she was going through this experience in the midst of a global pandemic.

But, despite the obstacles, setbacks and tragedy of losing her husband, Valeria did everything possible to make sure her daughter would receive the cleft care that she deserved.

Lilia successfully received surgery to repair her cleft lip, but her cleft care journey continues.

“When they gave her to me, I wondered, ‘This is my Lili?'” Valeria said.

After her cleft lip surgery, Lilia continued to receive ongoing speech therapy.

Committed to providing Lilia and Valeria with health that lasts, Operation Smile Mexico and it’s community of local volunteers remained in touch with the family to make sure everything was in place for Lilia to receive surgery to repair her cleft palate.

The love Valeria has for her daughter gave her the strength to make incredible sacrifices. Due to her determination and perseverance, Lilia will have a happier and healthier life.

“I will always be there for her, and I will always fight for my daughter,” Valeria said. “No matter what I have to do for her, I will always be there for Lilia. She will always be my child.”

The life Valeria and Lilia once knew had completely changed. While there are still challenges that lay ahead, certain struggles they endured for years became easier.

“When I got home, it was totally different,” Valeria said. “Her feeding changed a lot. It is not so hard for her to eat anymore.”

Months later, it was time to return for Lilia’s cleft palate surgery. After travelling nine hours to reach Guadalajara, Valeria and Lilia received wonderful news from the Operation Smile Mexico team.

Lilia was strong and healthy enough to receive surgery that would repair her cleft palate.

Valeria and Lilia arrived home ready to live every moment filled with love for one another. Today, both women now have brighter, healthier and happier futures.

Lilia ready for cleft surgery. Photo: Henry Cuicas
Valeria taking Lilia home after her cleft lip surgery. Photo: Henry Cuicas
Mum and daughter delighted before Lilia’s cleft palate surgery. Photo: Henry Cuicas

Lilia’s journey to health

Lilia and Valeria’s journey was delayed by the pandemic, but with much determination, now, mum and daughter, have a bright, health future to look forward to.

This has changed my life, because I know there is always a hope. I thank Operation Smile for how wonderful you are.

Valeria

Cleft care in Mexico since 2006

Baby girl in been weighed in screening cleft lip and cleft palate surgery screening clinic in Mexico
Lilia in 2021, being evaluated at screening day. Photo: Henry Cuicas.

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