Letter from Ken Salyer, Jr.: Board Chair

Dear Friend,

It takes a village to bring complex, cutting-edge surgeries to the world's most vulnerable children. And for the children who you will read about in this newsletter, it all starts with supporters like you.

From our partners who help us locate children in impoverished and isolated communities who are in need of craniofacial surgery … To our network of surgeons who have the expertise to perform these procedures … To the medical supply and imaging partners who donate costly but vital products needed for successful surgeries …

Your generosity connects children to this global village!

And you are also helping us expand our network. There simply are not that many doctors in the world who can perform these procedures. To increase access to this lifechanging care, we must train more surgeons and establish more surgical centers.

Along with Dr. Diego Steinberg, WorldCF's Medical Administrator, I recently traveled to Italy where we are in the process of helping to establish a craniofacial surgical center. The center will bring this specialized care closer to more children in Italy as well as allowing us to better serve patients in neighboring regions — especially those in Africa who currently must often travel to the Americas or Asia. This new facility will also allow us to facilitate the training of more experts in this field.

More surgeons, in more places, performing more free surgeries for children in need … that's how we transform faces and lives around the world. Thank you for making it all possible!

Ken Salyer, Jr.
Board Chair

Helping Kids Breathe Easier Changes Everything

Craniofacial abnormalities often cause difficulty breathing. For children like Somto and Patricia, that's a big problem.

Sleep apnea can leave children like Somto tired and unable to concentrate. It also affects the cardiovascular system and can lead to other life-threatening conditions.

A tracheotomy like Patricia's can let a child breathe through their throat, but it comes with complications. It can make speech impossible, lead to scaring of the airway, and carries a risk of infection. “Kids should not have a tracheostomy for the rest of their life," says Dr. Steinberg.

Like Somto, Patricia had a monobloc osteotomy when she was younger. She has arrived in Chennai, India. Your support is helping pay for her travel and lodging. Dr. Balaji is donating his time but needed assistance to afford the distractor for her surgery, which WorldCF was able to source from our partner, KLS-Martin (USA).

By the time this newsletter reaches you, Patricia will be on her way to breathing easy.

A Complex Case, Multiple Surgeries, and a Life Transformed

Bat's surgical journey is just beginning

Unlike many of the children you help, when 2-year-old Bat was born in Mongolia, his misshapen skull was likely not the first thing his parents and doctors noticed.

Bat has Apert's syndrome. This genetic disorder causes the fusion not only of the bones in the skull, but also of the hands and feet. Bat needs an operation to correct his skull shape and ensure his brain will have space to develop normally as he grows. He also needed surgery to use his hands and walk properly.

Your generosity allowed us to fly Bat to Taipei, Taiwan where WorldCF partnered with Chang Gung Memorial Hospital to determine the best course of treatment for Bat. Following extensive evaluations, his medical team decided to start with surgeries on his feet and hands, completed this fall.

Bat will have craniofacial surgery in the next year. We hope he can count on your continued support.

Update: A Bright Future for Mohammed

In our spring newsletter, you met Mohammed, an 11-month-old boy from Hyderabad, India. The bones in Mohammed's head fused prematurely, leaving his skull misshapen and his brain with little room to grow.

You helped us fly Mohammed to Chennai, India where Dr. S.M. Balaji performed surgery on April 21, 2022 using surgical products donated by one of WorldCF's medical supplier partners, KLS-Martin.

On his first birthday, Mohammed's mother wrote to WorldCF to express her joy and thanks for her son's bright future. “The last reports we've gotten were that he is doing great. His family has shared videos of him playing and doing regular kid stuff," reports Dr. Diego Steinberg, adding that Mohammed's brain will be able to grow normally now.

Like many WCF patients, Mohammed will likely need more surgery as he grows, and, with your continued support, WorldCF will make sure he gets the care he needs.

For Ongoing Support, Somto Can Count on WorldCF

Somto's craniofacial differences make breathing a struggle.

In March of 2019, when Somto was three years old, caring people like you helped him travel from his home in Nigeria to Cape Town, South Africa.

There, WorldCF's founder Dr. Ken Salyer performed a monobloc procedure, a type of osteotomy surgery where the bones are cut and repositioned. In Somto's case, his whole skull was moved forward to reshape his head and face.

As Somto grew, he developed obstructive sleep apnea, a severe medical condition that caused him to have difficulty breathing at night.

Dr. Salyer has passed away, but WorldCF continues to watch over his patients. Over the summer, with our partner 3D Systems, we put together a virtual surgical simulation for Somto. We determined he needs another osteotomy and are currently helping his family complete pre-op checkups and obtain visas for travel to the United States.

In February, with your support, we will help Somto travel to Dayton, Ohio where our surgical partner will use a device called a halo distractor to move Somto's midface forward again. This U-shaped headframe that is fastened around the top of the child's head. A vertical metal bar attaches to the headframe to the child's face. Special screws are turned a millimeter or so a day to pull the bones apart until they are in the right position. New bone grows to fill in the gaps. The process can take several months before the new bone is strong enough for the distractor to be removed in a short second surgery.

The complex procedure will release Somto's upper airway, allowing him to breathe better. With your help, this little boy has a brighter, healthier, and happier future ahead of him.