Beaumont Surgeons Aim to Give Teen Better Life
After years of waiting, months of planning and hours in the OR, Angela Atkinson of Redford feels a sense of relief. Her son, Ramon Aguilar, Jr., 16, born with facial abnormalities is getting the specialized care he needs.
Back in September, after Angela found out Beaumont has a Craniofacial and Cleft Palate Clinic, she met with nurse navigator Jennifer Brabant. She was overwhelmed with what she heard. After arriving home she burst into tears. At last she had found a group of specialists that offered hope and help for Ramon.
Explains Jeffrey Topf, D.D.S., chief, Oral and Maxillofacial Surgery, Beaumont Hospital, Royal Oak and one of the medical directors, Craniofacial and Cleft Palate Clinic, “The true uniqueness of this case is that a plastic surgeon, oral and maxillofacial surgeon and neurosurgeon operated together to reconstruct a complex facial deformity in one stage, rather than in multiple operations. This treatment plan was developed at our clinic with input from nearly 20 staff, representing a wide range of expertise.”
The Clinic’s medical team developed a plan that included a series of three surgeries over a 24-month period. The goal is to reconstruct the right side of his face and his jaw enabling him to eat solid food for the first time in his life.
Ramon, a 10th-grader at Thurston High School in Redford, is like most teens. He likes music, sports, his iPod Touch and is anxious to get his driver’s license. But unlike most teens, he has been unable to chew, swallow and eat solid foods since birth. He has Goldenhar syndrome, a congenital birth defect that affects development of the face. In most cases, as in Ramon’s, only one side of the face is affected.
“Ramon has severe facial asymmetry which is a well-known syndrome among craniofacial specialists. However, the ‘orbital translocation’ procedure that I did is rarely done. Dr. Daniel Pieper removed the frontal bone allowing me to perform bone cutting around the right eye. Ramon also has severe jaw problems which were addressed by Dr. Topf,” says Kongkrit Chaiyasate, M.D., pediatric plastic surgeon, Beaumont Children’s Hospital.
His jaw sockets never developed, subsequently he cannot open his mouth very wide, affecting his speech and ability to chew. He has been tube-fed his whole life. Ramon has a fraternal twin brother, Victor and the contrast in their physical stature is striking. Ramon is 4 feet 8 inches tall and 79 pounds. Victor is 5 feet 8 inches tall and 203 pounds. Despite their physical differences, like most twins, the brothers have a close bond.
“Strangers staring at Ramon is hard on him,” explains his mother Angela. “We talk about it from time to time.”
Ramon is one of five children. She says he’s outgoing. “I have always treated him like all the other kids. That includes household chores.”
He’s a water boy for the Thurston Eagles football and basketball teams. Angela says he has many friends.
“Once they get to know him and his personality, friends cling to him,” explains Angela.
As for Ramon’s future, Angela is hopeful he’ll be able to soon chew, swallow and eat solid foods. She also believes the surgeries will increase his self-esteem and reduce some of the painful stares.
