In March 2016, World of Children Founders Harry and Kay Leibowitz and World of Children supporters are visiting three World of Children Honorees to observe their work first-hand and see how your donations have made a difference in the lives of children. World of Children Celebrity Ambassador Stephanie March joined them for the first two legs of their journey.
Yesterday’s blog shared some of the difficulties facing impoverished children born with facial deformities. Today, we’re sharing the stories of two children whose lives have been radically altered because they were able to receive treatment free of charge at World of Children Honoree Dr. Ricardo Bennun’s Asociación Piel.
Joaquín was born in the Province of Buenos Aires in Argentina. He was born with Goldenhar syndrome, a congenital birth defect that includes various deformities of the face. It often only affects one side of the face – in Joaquín’s case the right side.
Joaquín was born with many of the characteristics of Goldenhar including a partially formed ear, cleft lip, cleft palate, and bilateral macrostomia, a type of facial cleft that results from incomplete fusion of different parts of the face when an embryo is developing. In Joaquín’s case, the bilateral macrostomia caused his mouth to appear “extra wide” and continually open. Joaquín also has “mandibular hypoplasia,” an incompletely formed jaw bone. Without treatment, Goldenhar can result in hearing problems, facial muscle weakness on the affected side, dental problems, and fusion of the bones of the neck.
Luckily, Joaquín’s parents found Asociación Piel when he was still quite young. Now 14 months old, Joaquín has had his cleft lip and bilateral macrostomia repaired. Just recently, his doctors performed a procedure that will produce increased bone growth in his right jaw. They were also recently able to reconstruct his right ear. The last step for Joaquín’s reconstructive surgery will be a full closure of his cleft palate. This will decrease his future risk for infections, speech difficulties, and dental problems.
The doctors at Asociación Piel will continue to provide rehabilitative therapy and support Joaquín and his family with any social issues that arise as a result of his facial differences as he grows up. They look forward to seeing him continue to grow and thrive and lead a happy life.
Mía was born with severe bilateral facial clefts that caused deformities in her mouth, nose, and left eye. She was born to a very young mother and lives almost 750 miles from Buenos Aires. Her mother did not find Asociación Piel until Mía was two and a half years old. Before that, they had visited another hospital and Mía underwent a failed reconstructive procedure.
Her first surgery at Asociación Piel was in January 2012. Six months later, the organization’s doctors were able to close her cleft palate. Two years later, they rebuilt her left eye socket and eyelid. In 2015, they began work on building an ocular prosthesis for Mía.
Over the four years Mía has been receiving treatment at Asociación Piel, she and her mother have continued to live very far away from the hospital. This means the medical team cannot follow up as often as they would like and the organization cannot help as much with rehabilitation and social re-integration for Mía. However, they all remain incredibly dedicated to this little girl who is truly beautiful, inside and out.
Check back tomorrow for updates from the trip!