Ruby – Congenital Cataract

Ruby was born with a congenital cataract in her right eye. We didn’t discover this until a fateful night at urgent care when she was three months old. We were there in the middle of the night for a serious case of RSV. But the doctor kept coming back to her eye. I was concerned about the breathing. He was concerned about both issues.

Within 24 hours we were at our first pediatric ophthalmologist appointment. Within a week we were sitting with a specialist at Seattle’s Children’s Hospital discussing options. It was all happening so fast and it was frankly, very scary.

She wasn’t able to have her surgery until she was 6 months old. The first surgery had to be rescheduled at the last minute due to another bout of RSV.  The waiting was the worst part; knowing my baby’s eye sight was in jeopardy and this surgery needed to happen sooner rather than later. I even took an extra week off of work before the surgery to pull her out of daycare in a desperate attempt to keep her healthy.

The surgery was a success! Ruby was a trooper who charmed everyone in the surgery room. At first, patching was a breeze. She’d happily wear her patch for hours on end. Her friends at daycare loved picking out her patch and “helping” to put it on her and keep her entertained during the process.

I thought, hey, I can do this.

And then she turned one.

And she refused to wear her patch. She’d scream and close her eyes when you went towards the box of patches. If we could get her to wear it for 10 minutes, with her right eye open about 5 of those minutes, we were happy. Considering we need her to patch 4-6 hours a day, every day, I was concerned.

And so were her doctors. If she didn’t get better, we were in real jeopardy for losing her vision. And we still could be. But these days, she’s better. She’ll happily (some days) let me put the patch on her and wear it for about 2-3 hours. On a good day, I can get 4 hours. On a rare day that makes me want to shout with joy – 5 hours.

But there are days we don’t patch at all because her contact slipped off of her eye and I can’t get it back on. Or when she rubs it out and we can’t find it. To make matters even more challenging, we can’t get it in and out ourselves. Ruby is such a fighter, screamer, kicker and head thrasher that her contact specialists have told us to stop trying. Instead, we make trips every other week to see them. Luckily, they love Ruby and get us in and out quickly.

She’s almost 20 months now, and such a happy, friendly little girl. She’s very social and loves playing with her friends and exploring the fun swings and slides at the park – just like any other toddler. Only with her eye patch.

One day I hope we’ll be able to get her contact in and out. One day I hope she’ll happily patch for 6 hours. One day I hope to explain why this happened to her.

I’m still working on that one myself.