Summer 2018 Newsletter
Summer Message from Dr. Salyer
It’s already early September, but at least summer’s still with us for a few more weeks, and we hope each of you is well and filled with hope for the future, despite these turbulent times. The WorldCF is growing rapidly and we are more committed than ever to helping transform the lives of children around the world who are born with the most complex craniofacial challenges.
All of us who devote our time, talents, and financial resources to this very important work know how wonderful it feels to give these kids excellent medical support. Helping kids does something special for each of us, too, and please join me in feeling good about yourselves when you give generously to the WorldCF.
In this Summer 2018 issue of Transforming Lives, you will read about precious little Stephie from the Philippines who suffers from Apert’s syndrome and who has recently had her first major surgery at our WorldCF affiliated center in Manila. Stephie is full of spirit and energy—and she’s a doll, I know you’ll agree.
In this issue, too, we focus on my friend and colleague of more than thirty years, world-expert pediatric neurosurgeon Dr. Derek Bruce, who is both a WorldCF medical director and member of the foundation board. Derek is one of the finest medical professionals and people I’ve ever encountered, and it’s a great pleasure to share more about him with you.
Don’t miss reading—and seeing—how Cameroon resident Julienne’s life was changed following her surgery aboard the hospital ship Africa Mercy by a WorldCF surgical team that included medical director Dr. David Chong of Melbourne, Australia, and Dr. Shailendra Magdum of Oxford in England. In our line of work, pictures speak very loudly about the excellence we demand of ourselves, and Julienne is a wonderful example of what’s possible. In helping transform her life, Drs. Chong and Magdum performed among the first ever intracranial surgeries aboard the hospital ship operated by the wonderful Texas-based charity Mercy Ships.
We share with you, too, the faces of several kids around the world who suffer from Crouzon’s syndrome. In Crouzon’s, an infant’s skull and facial bones fuse too early and normal facial growth cannot occur. Faces and skulls become misshapen; eyes often bulge dramatically, and vision and hearing problems are common. Yet Crouzon’s syndrome is one of the most common craniofacial disorders we treat—and treat successfully—with your vital and essential help.
PLEASE REMEMBER THESE SPECIAL KIDS and all the children around the world who depend on you to receive the gift of a normal, functional face so they can fulfill the many promises of their young lives.
Thank you so much in advance for giving as much as you possibly can to make these children’s dreams become realities! Thank you, and may God bless you.
Little Stephie Will Have a Great Life
praying that her recent surgery would go well
Our wonderful little Philippine patient Stephie, who suffers from Apert’s syndrome, underwent surgery in Manila in June. Her parents shared Stephie’s pre-surgery prayer with us. “Dear God, please be with me on my surgery day. I pray for a safe and successful operation. Help me to be strong so I can recover well. Amen.”
Born in June 2017, Stephie suffers from a rare craniofacial disorder that results in premature fusion of the skull bones, leading to abnormal head growth, a sunken appearance in the middle of the face, bulging and wide-set eyes, a beaked nose, and an underdeveloped upper jaw with crowded teeth and other dental problems. Shallow eye sockets also cause vision problems, and early fusion of the skull bones can affect the development of the brain if surgical treatment is not received early enough. Many of these children have cognitive delay as part of the syndrome, but there is some evidence that early surgery improves mental function. Most children with Apert’s syndrome also have webbed or fused fingers and toes of varying severity—and Stephie does as well.
Stephie’s first major surgery was performed by Dr. Bernard Tansipek, the chief surgeon at the Noordhoff Craniofacial Center at Philippine General Hospital in Manila. Dr. Tansipek was trained in Taipei, Taiwan under Dr. Yu Ray Chen and Dr. Sam Noordhoff, who established the excellent Manila craniofacial center named in his honor with WorldCF and Smile Train support. Stephie’s first skull surgery went remarkably well, and she will return in the coming months for additional surgeries to repair her cleft palate and separate
her fused fingers and toes. Her parents report that she’s a remarkably happy child— as her photos attest—and we have been honored to help her get the special start in life she needed. Stephie’s prayer has been answered with her first surgery. Please help us continue to answer her prayers and the prayers of other children and parents around the world! Half the children of the world do not receive treatment of any kind for these malformations. Everyone’s help is needed—yours most of al —and thank you so much for your continuing generous support!
Stephie with her thank-you cake for the WorldCF;
Stephie’s surgical scar
Dr. Derek Bruce
Remarkable Surgeon and Great Friend to WorldCF
It’s hard to imagine the WorldCF without the exemplary work and constant support of pediatric neurosurgeon Dr. Derek Bruce, who is one of the foundation’s five medical directors and who also serves on our board of directors. Semi-retired now, Dr. Bruce travels the world on behalf of the foundation, performing surgeries, teaching young surgeons, and always deeply affecting the lives of the children, families, and medical professionals he encounters.
He was born in Falkirk in Scotland and received his medical schooling at the University of Edinburgh. In 1967, he moved to Baltimore where he did an internship and six months of medical residency, followed by a year of surgical residency at the Greater Baltimore Medical Center. He completed his neurosurgery residency at the University of Pennsylvania, where he became a professor of neurosurgery.
In 1986, Dr. Bruce moved to Dallas where he joined Dr. Salyer’s team at the newly established International Craniofacial Institute and Cleft Lip and Palate Treatment Center, and where he also became a professor of neurosurgery at the University of Texas Southwestern Health Sciences Center and the chief of pediatric neurosurgery at North Texas Children’s Hospital at Medical City Dallas. He has written extensively on the various facets of pediatric neurosurgery, with over 250 publications in journals and books, and has been a pioneer in the development of pediatric skull base surgery and craniofacial reconstructive surgery.
Since 2003, Dr. Bruce has been clinical professor of neurosurgery and pediatrics at George Washington Medical School and Children’s National Medical Center in Washington, DC in addition to his work helping us establish craniofacial centers of excellence in developing countries around the world.
Dr. Bruce is an avid skier, and he and his wife Frances live in rural Pennsylvania. His gentle manner, quick wit, and a certain Scottish practicality are always with him—even if his accent has become rather American over the years—and we at the WorldCF count ourselves blessed to have him on our team!
WorldCF board member
and medical director
Dr. Derek Bruce
From left: Alvaro, Indonesia, Crouzon’s syndrome; Carlos, Cuba, Crouzon’s syndrome, with Dr. Christopher Gordon at Dayton Children’s Hospital in Ohio; Selenia, Zimbabwe, Crouzon’s syndrome; Jamoud, Crouzon’s syndrome, Tanzania
So Many New Patients,
Such Great Need!
The WorldCF is growing by leaps and bounds, and more of “our” children are currently in the midst of treatment around the world than ever before in our history. We treat many distinct disorders of the head and face, of course, and one of the most common is Crouzon’s syndrome, named after Octave Crouzon, the French physician who first described it.
The disorder is characterized by the early fusion of skull sutures, known as craniosynostosis, which prevents normal growth of the skull and which can dramatically affect the shape of the head and face. Signs and symptoms of Crouzon’s syndrome include wide-set, bulging eyes, misalignment of the eyes, a small or abnormal nose, and an underdeveloped upper jaw. Visual loss can occur due to increased intracranial pressure, and other features often include dental problems, hearing loss, and cleft lip and palate. The severity of signs and symptoms vary among affected children, even within a family. Crouzon’s is caused by mutations of chromosome ten, but nothing can be done either before or during pregnancy to prevent it.
Yet the good news is that it can be treated surgically with great success. Surgery is typically focused on preventing the closing of sutures in the skull from damaging the brain’s development and leading, oftentimes, to blindness and intellectual disability. In order to move the orbits surrounding the eyes forward, craniofacial surgeons expose the skull and orbits and advance the skull and facial skeleton. To treat midface deficiencies, surgeons move the lower orbit and midface bones forward. Crouzon’s syndrome occurs in about 1.6 out of every 100,000 children and is inherited as a direct dominate gene, meaning that fifty percent of all offspring will have this syndrome.
Among the dozens of children around the world who are currently in our care, a large number suffer from Crouzon’s, and we are delighted to be able—with your extraordinary help—to ensure that they grow up with normal vision and hearing and normal heads and faces that allow them to become productive citizens of the world. Children like little Alvaro from Indonesia, Carlos from Cuba, Jamoud from Tanzania, and Selenia from Zimbabwe would have very different outcomes and far less successful lives without your generosity and support.
Please keep in mind that for every child we introduce to you, dozens more receive lifechanging
care from WorldCF-affiliated craniofacial surgeons, clinics, hospitals, and medical personnel here in the U.S. and around the globe. Please give as generously and as often as you can to help us help them lead good and productive lives.
Thank you so much on these wonderful kids’ behalf, and profound thanks from all of us at the WorldCF for your life-transforming donations!
Julienne before and after her recent surgery aboard Africa Mercy, operated by Mercy Ships on the coast of eastern Africa
Julienne’s Life is Transformed Aboard the Africa Mercy
We are delighted to offer you a glimpse of the great work recently performed by WorldCF medical director Dr. David Chong, who practices in Melbourne, Australia, and his friend and colleague, neurosurgeon Dr. Shailendra Magdum, who works in the Oxford University Hospitals system in England, during their volunteer sojourn aboard the hospital ship Africa Mercy.
Fourteen-year-old Julienne once feared an early death because of the nasoethmoidal encephalocele that disfigured her face. She feared her complex surgery, too, but her devoted older brother never left her side during the six-hour procedure. Since her surgery, Julienne has blossomed into a vivacious young woman, and she looks forward to a future full of possibilities. “As the world gets crazier,” writes Dr. Chong, “at least we can turn to the universal power of healing others to give meaning to our lives.”
Please open your hearts and give as generously as you can—to help wonderful African children like Julienne and others like her around the world as well!