Overcoming Congenital Glaucoma

In the summer of 1998, Shavanne McCurchin noticed something odd about her 2-month-old son’s right eye. “The entire eye looked white,” she says, remembering that she thought she had accidentally sprinkled powder in his eye while changing his diaper.

Two referrals later, Ms. McCurchin and her son Densha were seen by Paul A. Sidoti, MD, at New York Eye and Ear Infirmary of Mount Sinai (NYEE). Dr. Sidoti confirmed the baby had primary congenital glaucoma in both eyes, a condition that affects about one in every 10,000 infants, and leads to blindness if left untreated. Although Densha’s family had a history of glaucoma, many cases appear to be spontaneous.

With a damaged optic nerve associated with excessively high intraocular pressure in each eye, Dr. Sidoti said Densha’s best alternative was immediate surgery, despite the fact that he was so young. He assured Ms. McCurchin that surgery offered the best chance of preventing blindness and allowing Densha to develop and maintain good vision in both eyes. It would not be a cure, but it would control the glaucoma.

Now 16 years old, Densha does not remember the trauma of his initial diagnosis or the surgeries that followed. Over the years, the Brooklyn teenager has grown accustomed to taking the many steps needed to control his condition and continues to be seen by Dr. Sidoti, who has been a principal investigator in clinical trials that improve surgical techniques and imaging studies for glaucoma.

In addition to wearing glasses, Densha adheres to a strict schedule of administering eye drops and follows up regularly with Dr. Sidoti and the ophthalmologists at NYEE to make sure that his eye pressure remains well controlled. Today, he plays baseball and the piano, and is planning on a career as a recording engineer producing classical music.

“When people ask me about glaucoma, I just say I was born with it, and I’ve been living with it since I was a baby,” Densha says. “It has been hard, but I know there’s a bright future ahead.” When he visits NYEE for his periodic checkups, Densha says, “I know I have supporters and people dedicated to helping me have a better future and better eyesight.”