“He will open his eyes when he is ready.” After the fourth doctor told me this about my son Duke, I began to have my doubts. When I asked why my son’s eyes were not opening, the most frequent response I received was, “He isn’t ready.” I could not wrap my mind around why my child would refuse to open his eyes for a week straight after birth. My first thought was, “Is he able to see?” Every doctor assured me he was able to see. Every day of our week-long stay in the hospital I would ask why and what I could do to convince him to open his eyes. The answer was to wait and let him open them when he is ready. We left the hospital without having seen his eyes. I had wished for dark blue eyes throughout my pregnancy, but little did I know it would be another four weeks before I would truly see them.

 

Duke’s pediatrician did not know what was causing his inability to open his eyes either. She spent 45 minutes of his two-week appointment researching possible reasons. Her search turned out as unsuccessful as mine. She ultimately referred us to another doctor at a nearby eye clinic.

It was there I was told he most likely had ptosis, also known as “lid lag.” Ptosis is a condition in which the upper eyelid droops, impairing vision and in some cases even causing blindness. The specialist informed us that surgery was the best way to manage it, but what he said next left me so humbled and appreciative. He said, “I am able to do this procedure, but I know someone who is the best.” To see not one but two different medical professionals admit they have room to learn and grow inspired me to continue to learn every day.

Daily until the appointment with the second specialist, I wondered what the future would hold for my beautiful baby boy. I experienced a feeling I had only heard about when working in the education field. It could only be described as the “death of your ‘perfect’ child.” That’s when I realized his life will be different. His experiences will not be like those of others his age. He will see the world differently, and even more frightening is realizing the world will see him differently. I was overcome with worry and guilt: worry that he would be looked at with pity, worry that the world would be cruel to him, guilt that I caused this condition in some way. With time these feelings transformed to pride and understanding.

The next doctor we saw, like the ones before him, was excellent about communicating and making sure I understood everything. It was here Duke was given his formal diagnosis. He was born with a genetic condition known as blepharophimosis, ptosis and epicanthus inversus syndrome (BPES). In addition to the “lid lag,” Duke’s eyes are much more narrow than average and his lower eyelid is fused to the corner of his eye. It was not until later that I found out how rare his condition actually is. I listened to the doctor, trying to understand these huge words I had never heard before. As my mind spun I looked down at my nursing baby and was overcome with a sense of calm. That’s when the worry started to lessen and transform just a bit.

Next came the prognosis. Like all genetic diseases, there is no cure for BPES, but it is treatable. The first step in treatment was to monitor his light reflexes, which indicated his ability to see. Thankfully his vision was determined to be completely normal. His doctor scheduled a surgery called frontalis sling. Duke was placed under anesthesia while the surgeon implanted three silicone cords to attach each of Duke’s upper eyelids to the muscles in each of his eyebrows. Prior to the procedure I was told there was a chance this same procedure would need to be repeated. When the doctor returned to inform me of the outcome, he made it clear this would not the last time Duke would have surgery. My heart sank once again.

As I walked to his room the worry returned. It only worsened when I was with him, his puffy face screaming to be fed. As he began to eat, my feelings were bittersweet. For the first time I was able to see the slate blue eyes of my grandfather looking back at me, but I knew this would not be the last time I would comfort him through this hardship.

Until his life-changing operation, Duke Harper was not able to open his eyes due to a rare genetic disorder. Pictured here, he is wide awake but appears to be sleeping because his eyes are closed. Over the next several days his dad and I would apply antibiotics to his eyes three times a day. Each time I was astounded by the strength of a baby only five weeks old. As I watched him heal, the worry was changing to pride again, but it was different this time. It was more solid, more secure and growing every day.  Every now and then a rude comment, “What’s wrong with his eyes?” or “Why does he look like that?” will try to put little cracks in the once ugly place which pride restored, but all I have to do is look at Duke’s smile and all those cracks are sealed.

While worry had become pride, the guilt was still there. I carried guilt that I somehow had caused Duke’s condition. At this point I decided he should see a geneticist. I needed to know what to expect and if it would affect his life in ways other than his facial features. It was here guilt turned to understanding. We learned that when a gene mutates, it is unavoidable and has no exact cause. The gene is just made a bit different, and there is nothing wrong with different. I was relieved to learn that BPES does not affect males in any location other than the eye muscles.

Duke sees his optometrist regularly at this point but has not been scheduled for his next surgery as of yet. He is a happy, healthy spitfire of a child with a wild spirit. My heart swells with pride when I look at him and consider the journey his has made. Two years later, he is all boy. He loves to run, jump and play outside. He has not suffered any developmental delays, and he has an ornery streak that forces you shake your head and laugh. He is a loving, intelligent boy. I know he is destined to do great things regardless of the shape of his eyes.