Management

There is no single medicine for the condition; care focuses on supporting each child's individual needs through a team of specialists. Depending on the features present, this team may include a clinical geneticist, an eye doctor (for the droopy eyelids), a craniofacial or neurosurgery team (if the skull bones join early), a feeding and nutrition team, a heart doctor, an ear/hearing specialist, and developmental therapists (physiotherapy, occupational therapy, and speech therapy). Early support and education planning help children reach their potential.

Regular check-ups are recommended: monitoring head shape and growth in young children, keeping an eye on feeding and weight, following developmental progress and school needs, and reviewing eyes and hearing when needed.