Primary Congenital Glaucoma

What parents should know about primary congenital glaucoma in infants and children.

Most people have heard of glaucoma, the disease that causes increased pressure in the eye and can cause gradual vision loss due to optic nerve damage. But did you know it can occur in children?

Primary congenital glaucoma occurs when a child is born with the condition or develops it in very early infancy. “Primary” means that the glaucoma is initially an isolated problem and not occurring because of another eye or systemic disease.

Primary congenital glaucoma is rare, affecting about one in 10,000 children but is typically very aggressive. If left untreated, the disease can eventually cause blindness.

Most children with the disease are diagnosed in early infancy, though sometimes it’s not noticed until later. Signs of primary congenital glaucoma include unusually large eye(s) and cloudiness of the cornea (the clear part of the eye). Symptoms include tearing, light sensitivity and decreased vision.

Children with this condition will often require frequent eye exams (sometimes under anesthesia) to check eye pressure and typically require surgery as well as eye drops to decrease the pressure in the eye.

Resources

Support for children with primary congenital glaucoma.

• Congenital Glaucoma (Parent Support): A Facebook group where parents and caregivers can find support and information. Search facebook.com for “Congenital Glaucoma Parent Support.”
• GL Foundation for Children with Glaucoma: An organization aiming to prevent vision loss in children with glaucoma by offering programs to help children with glaucoma receive the best care possible. gl-foundation.org
• The Glaucoma Foundation: This foundation supports glaucoma research, works to spread information about its causes and treatments, and offers resources for families including a directory of support groups. glaucomafoundation.org
• The Pediatric Glaucoma and Cataract Family Association: An association of parents and professionals who promote the quality of life for children with glaucoma and cataracts and their families. Services include providing information, resources and support groups. pgcfa.org
• Shae S. Daley Congenital Glaucoma Support and Information: This page on Facebook offers information and support for patients and parents and aims to inspire research about the disease. Search facebook.com for “Shae S. Daley Congenital Glaucoma.”