How can you help a child with Goldenhar Syndrome?

 

Diagnosing Goldenhar Syndrome: A genetic or birth defect specialist should be consulted for diagnosis. Also, a high-resolution ultrasound may be used for detection of skeletal abnormalities.

 

Early Identification: Audiological evaluation at an early age will help to detect and manage a hearing loss. Even babies with profound hearing loss usually have some residual hearing. This residual hearing can often be improved to a great extent through the use of hearing aid and special training. It is also important for intervention in helping these children to develop speech skills that may be lost if they do not receive help until later. A speech pathologist/hearing specialist can offer therapy to help a child succeed in learning the basic skills.

 

Surgery: A baby's cleft lip and/or palate can be repaired surgically. Timing of these surgeries will depend on the health and weight of the baby, but generally the sooner the better. Many babies with oral clefts will have difficulty nursing or drinking from a bottle. It may extra time, but it will become easier as parents learn to adjust to their baby's special needs. Plastic surgery may improve the facial appearance, which in turn can help improve any psychological and emotional problems.

 

Dentistry: Dental care may also be required to correct any anomalies. Pediatric dental specialists should be consulted as early as possible to make sure the child's jaw is the right size and shape to correct the position of individual teeth and to maintain good dental and oral hygiene.