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International travel restrictions haven’t limited Transforming Faces’ (TF) support for children with cleft worldwide.

Commitment to local professionals has been woven into our ethos from the start. Now in our third decade of promoting Comprehensive Cleft Care (CCC), the strong roots of our global network nurture our shared vision amidst the disruption and challenges of the pandemic.

We marvel at the way the cleft community has rallied together. Membership in the Circle of Cleft Professionals (CoCP) network has increased by over 200% in 60 countries. In 2020 we also united to support cleft teams facing unimaginably difficult situations through the first ever Solutions 4 Comprehensive Cleft Care: Responding to COVID virtual conference.

The innovative solutions generated by local cleft professionals continue to improve the lives of vulnerable cleft families worldwide.

For families facing lockdowns and delays, tele-health is an indispensable tool in making care more accessible. Undeterred by the pandemic, TF also promoted the safety of patients receiving in-hospital care, empowering families, like Sofia’s, to reach their rehabilitative goals. The story of a newborn’s recovery from COVID in India, and the commitment of his local cleft team, continues to inspire us.

The kindness of TF’s supporters was also an incredible highlight from the past year. Your financial partnership has enabled us to keep faith with our partners, whose motivation to see each child experience a happier and healthier life is undimmed.

Overall, we emerge from Year 1 of the pandemic disquieted by its disproportionate impact upon the most vulnerable. And yet, we remain grateful for how the TF community, near and far, demonstrates its commitment to be In It Together.

Hugh Brewster
hugh@transformingfaces.org

Where We Work:

Ethiopia

TF partnered with three additional cleft organizations focused on newborn nutrition, speech therapy and community outreach. In response to the pandemic, TF’s Ethiopian partners pivoted to provide virtual counselling, speech therapy and support groups to families at different stages of their cleft care journeys.

Where We Work:

Uganda

TF worked with local partner CoRSU Rehabilitation Hospital to assist families experiencing heightened food insecurity due to the pandemic. Community mobilizers also played an important role in supporting families who live far from the capital city, as well facilitating their transportation to essential cleft appointments.

Patient Story:

A Fateful Discovery in Ethiopia

Though Sabira looked like other newborns when she was released from the hospital, her parents were soon overcome with concern. Sabira experienced repeated respiratory and ear infections, and feeding would often cause her to aspirate.

Distressed, the family travelled to hospitals and clinics across the city of Addis Ababa for treatment of Sabira’s symptoms, which seemed invariably to recur. By Sabira’s sixth birthday, her father was heartbroken that she could not even draw enough air to blow out the candles on her cake.

Determined to find the source of Sabira’s ailments, the family was at last referred to TF’s partner Yekatit 12 Hospital. Incredibly, it was this public hospital closest to their home that provided a definitive solution: though Sabira’s lips were intact, no one had previously noted that she had been born with a cleft palate!

A huge weight was lifted from their shoulders when they learned how they could finally help Sabira make a full recovery! Following her palate repair surgery, Sabira’s life has changed for the better. She now eats without issue, and speech therapy has opened a world of opportunity to her at school. Sabira counts English and math among her favourite subjects.

Patient Story:

Procuring Nutritional Support in Uganda

When Susan first connected with TF’s local partner in Uganda, CoRSU Hospital, she was distraught over her son’s condition. At 11 months of age, Marvin weighed just 5.5lb. His cleft made breastfeeding very difficult.

“I am worried. I have never seen anyone with this condition. Will my child grow to become like other people?” Susan asked her social worker.

As labourers in one of the district farms near the local hospital, Susan and her husband work hard to earn just enough to rent the small room in which they raise their young family. Affording medical care and travel expenses for their newborn would be too heavy a burden to bear on their own.

Thankfully, with the full support of their Comprehensive Cleft Care team, Marvin’s medical care and transportation costs to the hospital were provided free of charge.

With the assistance of CoRSU’s nutritionists, Susan quickly learned crucial feeding techniques to help her son. Even still, Marvin struggled with undernourishment. The social work and nutrition teams held a joint assessment to get to the bottom of Marvin’s situation.

“We found that breast milk was not enough, and the parents could not afford the supplementary nutrition, such as the high protein milk,” noted Marvin’s nutritionist.

Thanks to the support of Transforming Faces’ donors, nutritional support packages had already been procured that would help Marvin gain the weight necessary to safely undergo his first cleft surgery.

Now, Susan’s outlook has been transformed and she takes great pride in her son’s journey to full rehabilitation, “I am so excited that my son has moved towards total healing. Thank you.”

Where We Work:

India

TF’s local partners were determined to reach rural and remote communities amidst the pandemic. To increase remote access to services, speech therapy was provided virtually and educational videos promoting cleft awareness were widely distributed. We also celebrated the launch of two new projects in partnership with ABMSS, helping centres in Bangalore and Kolkata embrace a CCC approach.

Patient Story:

Overcoming Cleft and COVID in India

When Rekha discovered that her son would be born with a cleft, she wrapped her devastation in a stoic exterior. She hid the news from her husband and in-laws, sheltering them from the stigma associated with giving birth to a child with a facial difference.

Thankfully, Rekha was eventually referred to TF’s local partners, ABMSS and Rangadore Memorial Hospital, where she experienced compassionate care and received practical advice. Beginning with nutritional and pre-surgical support, ABMSS helped Rekha map a clear path for her son’s rehabilitation. Rekha finally felt equipped to accept her son wholeheartedly.

It was the beginning of a long journey to full recovery.
Undeterred by the pandemic, Rekha managed to visit the cleft centre for periodic pre-surgical treatments. This care took a sudden turn once her newborn began to experience symptoms of COVID. The CCC team in Bangalore rallied to offer their full support, ensuring he was promptly admitted to the intensive care unit.

It would take time for her son to recover from the coronavirus and to receive a cleft repair surgery, but Rekha joyfully reports that her son is now happy, healthy and has been fully accepted into the family. Her son now carries the given name Toshit, which means “satisfaction” in Sanskrit.

Partner Story:

Experience Dr. Vivek’s first-hand account of his fellowship with TF’s local partner, ABMSS

After completion of my post-graduation in maxillofacial surgery, I was thrilled to be accepted to study under the comprehensive cleft team at the ABMSS Kolkata Cleft Centre, starting in January 2020.

From the beginning of my cleft surgery fellowship, I worked not only with surgical teams, but with orthodontic specialists, speech therapists and nutritionists to name a few! I learned how important cross-specialty collaboration is for children born with cleft who face a long rehabilitative journey even after the initial surgery.

In addition to surgical training, I also became involved with patient outreach, working with social workers in remote areas near Kolkata. Together, we connected with over fifty families to provide them with cleft resources and educational materials.

When COVID restrictions came into effect, our first priority was to maintain a connection to families through virtual consultations and appointments. Following all government guidelines, my surgical training was able to continue and my skill and confidence grew, even under the challenging circumstances of the lockdown.

I am very grateful for the training and mentorship ABMSS and Transforming Faces provided. With only two months left to complete my fellowship, I am proud to be able to perform cleft lip repairs and experience the most rewarding part of my training: bringing smiles to families.

Where We Work:

Thailand & Myanmar

Over half of the Northern Women’s Development Foundation’s (NWDF) patients live in Myanmar and Laos, across Thailand’s borders that have remained closed since early 2020 due to the pandemic. As a social worker-led organization, NWDF has been very effective at supporting families remotely, through tele-speech therapy, Facebook groups, instant messaging and virtual family camps.

Patient Story:

Meet Nattanon

TF’s long-time partner, NWDF first met Nattanon and his family in 2003. His parents were left in shock at the discovery of his cleft, and had been keeping their new baby from meeting his grandparents, afraid of their reaction.

Like many parents, they worried about what the future held for their child: Would Nattanon ever go to school? Make friends? Find a job? Have a family of his own one day?

Thankfully, the team at NWDF allayed their fears and shared the good news: their son’s condition was treatable – and the Comprehensive Cleft Care team would be there to support the family’s treatment journey, every step of the way!

Thanks to TF’s supporters, Nattanon received his initial cleft lip repair surgery in 2004. A few months later, Nattanon’s cleft palate repair was successful.

Through speech therapy sessions, Nattanon learned to communicate clearly with classmates and teachers alike, and excelled as a student. Through it all, Nattanon’s joyful personality and bright smile moved everyone involved in his treatment journey.

Seventeen years later, Nattanon continues to thrive! His cleft treatments are nearly complete — with only a few orthodontic treatments remaining — but his relationship with NWDF endures. As he trains to become a chef, he enthusiastically shares his story with new parents affected by cleft, inspiring their dreams for the future.

Donating PPE

NWDF social worker, Gift, and her family helped make 1,500 masks that were donated to Tachileik Hospital.

Bright Start Monthly Giving

Bright Start monthly donors support children born with cleft lip and palate in Myanmar so that they have access to a complete circle of cleft care from the day they’re born until they have transitioned into school and beyond.

In 2020, 65 children journeyed towards full cleft rehabilitation thanks to their monthly commitment. Here’s what our donors have to say:

“I started my cleft care journey over seventy years ago, receiving corrective surgeries into my thirties. Even now, when I’m tired, I have traces of the speech impediment that I worked so hard to overcome.

My journey, while different from children today, was successful. I thank Transforming Faces for empowering local providers to perform the needed surgery, and as importantly, the years of aftercare that are so crucial for children born with cleft to have their own successful outcome to their journey.

These children learn the hard way that true beauty really does come from within; perhaps the gift of that is we recognize true beauty in others more easily.

Thank you Transforming Faces."

- Vicki, monthly donor since 2013.

Join Bright Start

Where We Work:

Argentina

In response to the government-imposed lockdown in early March 2020, TF’s local partner, Fundación Gavina, quickly implemented COVID protocols to promote the safety of families and staff. Over 70% of patients have been able to continue their rehabilitation treatments virtually.

Patient Story:

Preparing for a Newborn with a Cleft in Argentina

When Jessica found out that she was carrying a child with a cleft, it was amidst the unimaginable circumstances of a global pandemic. With strict government curfews and limited access to specialized healthcare, Jessica did not know how to prepare for the needs of a newborn with a cleft.

TF’s local partner Fundación Gavina had a plan. Utilizing available technology, Jessica’s multidisciplinary cleft team was able to provide virtual counselling to equip her with the tools to provide for a newborn with cleft; and on July 12, 2020, Guillermina was born.
Thanks to the support of her Comprehensive Cleft Care team, Jessica was prepared to continue Guillermina’s rehabilitation journey. Today, Jessica and Guillermina attend pre-surgical sessions, receive nutritional support and have started speech therapy exercises to help secure a brighter future.

Where We Work:

Costa Rica

In early March 2020, the government declared a state of emergency, halting all non-essential public services. Asociación LPH thus closed its in-person facilities and began to provide remote speech and psychosocial counselling to 130 families in partnership with TF.

Where We Work:

Chile

TF’s local partner, Fundación Gantz, was impacted by government lockdown measures, which suspended in-person services and caused a backlog of appointments once restrictions were lifted. With the support provided by TF to upgrade its facilities and medical database, Fundación Gantz was able to safely meet the increase in demand for in-person care.

Patient Story:

A Priceless Smile in Costa Rica

Samantha lives with her family in Tierra Blanca, a small city about 30 km from Costa Rica’s capital, San José.

The journey to parenthood had been long, and when a fissure was found in an ultrasound, Samantha’s parents were faced with the unexpected reality of having a child with a cleft.

Not knowing anyone with the condition, they were fortunate to connect with TF’s partner LPH, and began receiving support that would prepare them for Samantha’s arrival into their growing family.

At birth, Samantha’s mother learned how to safely feed and care for her daughter to ready her for lip surgery. They also received emotional support throughout the process, to ensure a happy transition into the home, and introduction to their extended family.

Samantha’s parents are dedicated, never missing an appointment; her father works during the day, so it is her mother who provides active support throughout the day to strengthen her development.

Now, at two-years-old, Samantha has received her cleft lip and palate repair surgeries at the National Children’s Hospital. Her family continues to receive support from LPH, as well as from other families of children born with cleft who, through sharing their experience and knowledge, have helped the family overcome the many stages of recovery.

Samantha’s smile is priceless.

Patient Story:

Meet Sofia & Carlos

"We want to thank Transforming Faces for the expansion of the waiting room. It was ready just in time to help parents and their children socially distance, so we all feel much more safe."

- Valeska, Sofia's Mother

"We are grateful for the new arrangements provided by Transforming Faces. With more space and a bright atmosphere, the wait is much more pleasant and helps with Carlos’ anxiety."

- Nicole, Carlos' Mother

Where We Work:

Peru

Just one week after the government declared a curfew, the cleft team at Universidad Peruana Cayetano Heredia (UPCH) launched virtual care, including psychological counselling and speech therapy.

Patient Story:

A Transformative Future is on the Horizon in Peru

When Maribel held Gissel in her arms for the first time she felt helpless. Unable to latch on for breastfeeding, Gissel would cry seemingly without reprieve. Taking care of a teenager with special needs, her elderly parents, as well as Gissel, Maribel felt adrift and overwhelmed without help she could little afford.

Fatefully, Maribel found the support she needed thanks to TF’s local partner, Universidad Peruana Cayetano Heredia (UPCH). Working with a specialized team, Maribel quickly learned how to care for Gissel’s needs. Soon, Gissel began to receive pre-surgical treatments to qualify for a successful lip repair.

With so many responsibilities life is still hectic, but now that a course of treatment has been set, Maribel can see a transformative future on the horizon for her family.

Patient Story:

The Burden of Cleft Care

In the minutes after giving birth, Silviya was concerned - she had not yet held her baby, Andrei. Where was the child she had longed for? Was something wrong with him?

When a nurse at last presented Andrei, Silviya was unprepared for what she saw. Her confusion turned to grief. Her nurses counseled that she put Andrei up for adoption. “Medical care for cleft lip and palate will be too great a burden for you,” they advised.

Sadly, like many mothers before her, Silviya parted with her son at the hospital believing that institutional care was the only way for Andrei to receive the cleft treatments he needed.

Silviya, however, never gave up hope that she would bring Andrei home.
Eventually, Silviya found the support she desperately needed from Association ALA’s network of parents and cleft professionals. She was immediately reassured that Andrei’s cleft challenges could be successfully treated over time with surgery, speech therapy and dental care, all while he was in her care.

Empowered with this knowledge, Silviya was at last reunited with her son, supporting him at every step of his rehabilitation journey. Silviya’s greatest hope now is that other families receive accurate cleft information and support from day one.

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2020 Annual Report

In It Together

A Year of Innovation & Resilience

A Message from the Executive Director

International travel restrictions haven’t limited Transforming Faces’ (TF) support for children with cleft worldwide.

Our Mission

We equip local teams to provide comprehensive cleft lip and palate care that is accessible for all. Together we are building happier, healthier lives for children and families in Africa, Asia, the Americas and beyond.

Our Vision

Our vision for children with cleft lip and palate is full inclusion into their community, so they can pursue their hopes and dreams.

Your Gifts at Work

On behalf of all local partners and cleft families, thank you.

Programs

Local partners deliver life-changing care to children and families thanks to your support.

Administration

Fundraising

These costs are covered by a private charitable foundation.

*This allows us to direct 100% of your donations to cleft care!

Join Us In Completing The Circle Of Cleft Care

Extending Comprehensive Cleft Care Worldwide

Our Local Partnerships With Cleft Teams

With your support, TF equips local cleft teams to provide support for long-term rehabilitation of children with cleft lip and palate. We are united by our shared vision of children experiencing full inclusion at home and at school and living a full life in their communities.

A Global Network of Cleft Professionals

Transforming Faces is a founding sponsor of the Circle of Cleft Professionals (CoCP), a growing global network of cleft professionals with an interest in promoting Comprehensive Cleft Care (CCC) in resource-constrained contexts. In 2020, CoCP membership nearly tripled, representing over 400 cleft professionals in 60 countries across the globe.

Hover to explore our work with local partners

A Global Network of Cleft Professionals

Context for Cleft Care:

Africa

Access

In Ethiopia and Uganda, cleft care services are concentrated in the major cities, resulting in very long travel distances for most families to access pre- and post-surgical care. In Ethiopia, Yekatit 12 is currently the only hospital in a country of over 100 million people that is providing a complete circle of cleft care.

Stigma

Cleft can be perceived as a curse inflicted upon the family or upon the infant’s mother. As a result, families can feel responsible for causing their child’s condition and discouraged from seeking treatment. Counseling is crucial in equipping parents with accurate information about how to care for their newborn and how to pursue their child’s full inclusion in the community.

Resources

Ethiopia and Uganda face a shortage of cleft care specialists, including trained cleft surgeons and speech therapists. Due to many competing public health issues, cleft care is not highly prioritized nationally. Many low-income families rely on charity-funded programs for treatment.

Where We Work:

Ethiopia

Patient Story:

A Fateful Discovery in Ethiopia

Where We Work:

Uganda

Patient Story:

Procuring Nutritional Support in Uganda