Indiana: More than her diagnosis

Indiana was born a week early, a whopping 9lb 3oz. She was so beautiful and our family was complete. As we were getting ready to go home, during her new born tests they couldn’t see any red reflex at all in either eye.

After extensive examinations, numerous opinions, and blood tests, at just one day old they confirmed Indiana was blind. She had dense cataracts blocking the vision in both eyes. My whole world fell apart.

I had never met a blind or visually impaired adult or child before. I had no idea what to expect, what to do, or how life would be. I felt helpless and scared.

The first four weeks of Indiana’s life consisted of countless appointments with different professionals, genetic testing, and hospital trips. During this time, she was also diagnosed with nystagmus and strabismus. At five and six weeks old, Indiana underwent surgery to remove her cataracts. Afterwards, we had to follow an intense eye-drop regime to help her eyes heal.

At just 12 weeks old, Indie was fitted with contact lenses, which she now wears full-time to give her some functional vision.

Every two weeks, her eyes were tested to see if she was beginning to develop vision. Still, to this day, her ophthalmologist believes Indie only has light perception in her right eye and minimal vision in her left.

Before Indiana turned one, she had three regrowth surgeries in both eyes, as scar tissue was forming again and blocking any light from getting in.

When Indiana was 10 months old, we finally received her genetic results. She has a faulty gene called GJA8, which causes cataracts and glaucoma. This wasn’t passed down from me or her dad, it was a complete anomaly, which brought us some relief.

Indiana is now registered sight impaired. Her vision continues to be monitored every month, with little improvement so far. She also patches daily to try to improve her strabismus.

Honestly, it’s scary. When you find out your baby is visually impaired, you worry about the future and what it holds for them. But if I could have seen one-year-old Indie when she was first born, I would have been okay.

She is such a happy, wild, and confident little girl. She takes everything in her stride and shows me what she is capable of every single day.

I am so proud of her.

If you would like to follow our adventures please follow: @lifewithcateracts as I raise awareness about the condition and share insight into living life with Nystagmus.

By Sarah Clougher