Jill's Story

While snuggling our precious newborn daughter, Jill, we would gaze deep into her eyes daily to predict their eventual color. Would they remain sky blue like her sister’s or turn chocolate brown like her daddy’s? Little did we know that her baby blues had so much more to reveal.

Jill was diagnosed with congenital glaucoma at just three months old. For several weeks prior to this, Jill was tearing in her left eye and increasingly kept her eyes closed during the day. As is common with such a rare disease, our pediatricians misdiagnosed Jill with a blocked tear duct and subsequently conjunctivitis.

After keeping her eyes closed for a full day, Jill opened them to reveal a disturbing blue haze in her right eye (photo 1). As parents, it was a frightening few hours trying to get a doctor’s appointment while concurrently researching her symptoms on the internet ourselves: watery eyes, sensitivity to light, and cloudiness of the cornea. A Google search revealed her congenital glaucoma diagnosis immediately. Reading medical information on various websites was alarming, but it also prepared us for the news that we would receive later that day from a pediatric ophthalmologist, “Jill has a classic case of congenital glaucoma.”

A week later, Jill had a three and one-half hour procedure at Wills Eye Hospital. Dr. Richard Wilson performed a goniotomy on Jill’s left eye which had a pre-surgery, Cosopt-aided IOP of 23 and a trabeculotomy on her right eye which had an IOP of 33. We were anxious to see our tiny girl in the recovery room and were a little awkward about comforting her amongst all of the monitoring wires. Thankfully, we were able to take her home that very afternoon. Jill’s eyes were extremely swollen (photo 2), but this decreased quickly over three days. As parents, the experience of having our infant in surgery was heartbreaking, but the true test of our resolve was during the two subsequent weeks. Removing the medical tape attached to Jill’s plastic eye shields in order to administer eye drops four times a day left her smooth baby skin red and raw (photo 3), and prying her sore eyelids open to her gut-wrenching cries often left us in tears as well.

Jill opened her teary, light-sensitive eyes more and more each day (photo 4), and after two weeks, her chubby-cheeked smile returned to delight us all (photo 5). Administering the eye drops became easier as the weeks went by, sneaking them in as she was sucking on a pacifier or sleeping. Five weeks following the surgery, Jill appeared and acted like a five-month-old baby should…bright-eyed, curious, and pleasant (photo 6). Her vision seemed to be quite good, as she seemed to happily recognize familiar faces from across the room.

At this point in the story, we would like to end with the proverbial, “and she lived happily ever after,” however, looks were deceiving. The normal IOP for children Jill’s age is 7-14. When her pressures were checked at six-weeks following the initial surgery, the trabeculotomy in the right eye resulted in a satisfactory IOP of 14; however, the goniotomy in the left eye resulted in an IOP of 23, thus requiring a trabeculotomy. Although we knew that more surgeries were possible, we were disheartened to start the process all over again.

We are extremely grateful that we live close to Wills Eye Hospital, a world-renowned glaucoma facility, and that Jill is in the exceptionally gifted hands of Dr. Wilson and his compassionate staff. This difficult time has been bearable due to our utmost confidence in her medical care along with the endless support of friends and family.

So as we try to get our brown-eyed-girl’s glaucoma under control, her story is to be continued…