I noticed something was wrong with Julia’s eye when she was 6 months old. Her right pupil looked like it was a “mirror” or had a weird reflection. My husband and I discussed it and I decided I didn’t want to take her to the pediatrician because I figured I was overreacting. So I waited until her 8 week appointment. As soon as I mentioned it to the doctor, she shined a light into her eye. The look on her face told the story. I knew something was really wrong.
We were at Children’s Hospital the very next day. She saw several docs, had several exams – even an ultrasound of her eye. We found out she had a cataract and PHPV (Persistent Hyperplastic Primary Vitreous). She needed immediate surgery to gain any sight in that eye. I asked the doctor what would happen if we didn’t do surgery and he told us she would be blind in that eye.
She had cataract surgery at 9 weeks old and an additional surgery at 5 1/2 months when her iris fused to the remaining lens capsule. She also has had strabismus surgery and an exam under anesthesia.
She initially wore a contact and patched part of everyday. Eventually her left eye needed significant correction, so we switched to glasses and eventually added a bifocal. She wears her glasses every day and patches part of the day too to encourage her right eye to connect with her brain.
Patching has been the toughest part of this journey. We still fight her daily to keep her patch on and we sometimes go through 20 patches in a day. But her vision is worth the fight, so we just keep on trying! She is now 20 months old and her glasses are just part of her!
