Rafael's story

At our six week postpartum check up, our GP noticed something strange in our son’s eyes. Family members had made comments but I had not been very fazed by these concerns as I told myself that between the hospital paediatricians and the post-birth nurses, surely someone would have noticed if something was wrong. Well, it turns out we were wrong.

At 6 weeks of age, our son was diagnosed with bilateral congenital cataracts and within two weeks he had both cataracts removed. It was only after the rush of all the surgeries that the ophthalmologist sat us down to explain that this was the beginning of the journey and not the end. Prior to this, I had little to no idea about congenital cataracts, much less how much they would change our lives. I remember feeling so disheartened, confused and alone. 

As time went by, we had many more visits to the Children’s Hospital. At around 4 months of age, we began using the permeable contact lenses, which raised a whole new set of challenges. We had nights of tears and panic, once even calling our optometrist at 10 PM begging him to come over because we couldn’t get the lenses out. But we got there eventually! Now, we can practically do it with our eyes closed (though my husband still squints when it’s my turn to do the inserting).

We later began the famous patching, which has proven to be more of a challenge as a toddler, so any tips please share. Due to the development of strabismus as a result of the cataracts, two days before our son’s first birthday, he also underwent strabismus correction surgery in both eyes. Our ophthalmologist said the surgery went well, the correction looks okay but he may need another one later down the track.
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As our son’s world expanded and he began to mingle with other babies, we realised that his journey wasn't just about his vision, but about how he moved through the world. This again brought a whole new set of challenges, but we are thankful that our son now has NDIS funding and is seeing a physiotherapist and an OT to continue to support him to reach his milestones. 
Our son is now 16 months old, and is the joy that lights up our world. He is inquisitive and very curious, he loves playing peekaboo and is almost at the point where he can run off on his own!
I wish I could go back to the version of me sitting on the floor with my four-month-old, crying because he couldn’t hold eye contact with me, just to tell her that one day, everything would be okay.

To the parents reading this and wondering, ‘should I share my story?’, or ‘was it even worth sharing my story?’. I cannot tell you enough how comforting and uplifting it was to discover I was not alone and to read the inspiring stories of how you soldiered on and are helping your children to live the best life they possibly can.