Carlos’ Greatest
Advocate: Nora
Seven,
Eight,
Nine –
Nora counted the hours from her delivery bed. Why had no one brought her baby yet? Something wasn’t right.
At three in the afternoon, the doctor arrived. The room closed in around her - her newborn son, Carlos, had a cleft lip and palate.
Holding him in her arms, it was the first time she had seen someone with cleft.
Cochabamba, Bolivia.
In Bolivia in the 1990’s, cleft surgery was handled primarily by fly-in/fly-out missions. All the birth centre could offer was guidance on future surgical missions.
Would it be…
Ten,
Eleven,
Twelve –
months or years wait for help?
Nora pondered Carlos’ future.
Support from others was a lifeline while she determined their next steps. Her father was able to mobilize work contacts in Germany. It’s the only way Nora could receive special bottles to feed a child born with cleft. And Nora’s mother? She encouraged her to be strong and keep going.
But not everyone stood by her.
A rift emerged within the family - some blamed Nora. “A divorce was the only solution!” they’d say, or “Give him up for adoption!”
Opinions persisted everywhere.
Nora used to bring Carlos to work with her at her stall in the Cochabamba market.
Merchants gossiped that Nora must've suffered from addiction during pregnancy. They would say things about Carlos’ appearance every day.
The chatter pushed her to leave the market – once an important community in her daily life.
Stepping away meant reducing the family income, growing the ‘burden of care’.
Months and months passed by. She held out hope. Back then, Transforming Cleft’s local partner, Ayninakuna, wasn’t an option yet.
The principal answer: Fly-in/fly-out missions.
Nora waited to hear when the next batch of foreign care workers were coming to Bolivia. When she could, she’d travel with Carlos to the mission, deepening the financial strain.
They would wait all day to be told that Carlos’ case was too complex for them to treat.
Today, this model of care still attempts to address a gap in healthcare within the country.
Six,
Seven,
Eight… The years passed by.
Carlos accessed sporadic, incomplete care where he could. Often surgeons were unsure how best to treat his palate.
He went to school. He studied, but he struggled with his confidence. The openings in his palate meant he couldn’t speak like other children.
Bullying was intense. Nicknames were a constant occurrence. He’d come home in tears and ask his mother “Why was I born this way?”. During the worst moments, he’d tell Nora, “It’s your fault I’m like this”.
Sometimes, Nora would tell herself the same.
Patience was key to Nora’s approach… as a parent and as she searched for answers. Through it all, she has been Carlos’ biggest advocate. She always tried to encourage him, saying “You have feet, you have hands, you can work, you can do anything!”.
Your support makes cleft care accessible for children in Bolivia and beyond.
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Carlos’ hopeful future:
Encouraging the Next Generation
Now at 30 years old, Nora’s words of encouragement are something Carlos carries with him, as he continues to write his story.
He works hard to achieve his dreams.
While Carlos grew, so did Ayninakuna – a centre dedicated to rehabilitative services for children born with cleft, right in his home city. They wanted to offer Comprehensive Cleft Care – local teams offering year-round care.
Eventually, they found each other.
Dr. Eligio Arciénega Llano from Ayninakuna, took on Carlos’ complex palate fistulas. After multiple surgeries, Carlos’ palate would finally be closed.
While Carlos couldn’t access care at a younger age, elements of full circle care made an immense difference for him later in life.
Growing up, Carlos found refuge in music.
He developed a passion for the bass.
He used to record himself speaking to try to improve his pronunciation.
That practice became singing as a method of improving his speech clarity, eventually supported by our local partner, Ayninakuna.
His favourite pastime: playing in a band.
With the support of his mother and a dedicated cleft care team, Carlos is thriving. He’s earned his university degree and is pursuing a second – His plan is to become a lawyer who fights for vulnerable people. Nora is proud of his confidence.
Carlos cleft care journey is nearing its end, but he continues to access some aspects of care with the goal of full rehabilitation.
The Circle of Care in Bolivia
Early access to the full Circle of Care is critical to the rehabilitation of children with cleft. Without treatment, some children can struggle to eat, breathe, and speak.
In the 30 years since Carlos’ birth, more local care has become available to Bolivians, yet there is still much to be done.
Transforming Cleft’s local partner, Ayninakuna, is one of a few centres offering full-circle care within the country of 12 million.
Parent and Patient Support Groups
Cleft treatment requires a long-term commitment from families.
For parents, community exclusion can be a reality. For children, persistent bullying and low self-esteem are common experiences.
Parent and patient psychosocial support helps families continue the journey and helps children lead full lives.
Carlos’ presence in Parent & Patient Support Groups motivates parents to continue the care journey and helps them see a bright future for their child. He helps younger children with cleft understand: they too, can do anything.
You can help make Comprehensive Cleft Care accessible for more families.