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. 

Hunter’s my first child. We don’t have any family history of congenital cataracts on either side. Hunter just drew the short straw. 

He was born with bilateral congenital cataracts. I noticed white dots in his pupils at one month of age, and we saw specialists straight away. We were sent to the children’s hospital where he was diagnosed. A month later he had the cataracts removed. His surgery went well and he started wearing contacts within a week after surgery. He had another surgery two months after the first to clear up some cloud scarring. He’s been doing well ever since. He wears RGP lenses, which we put in and take out daily. 
Hunter’s my little trooper, handling it all with smiles and giggles.

Sammy was born in 2019. The perfect final piece to our family of 5.

I noticed within the first few days that there were tiny white dots in the centre of both of Sammy’s eyes. I brushed it aside and put it down to fatigue and over worry on my behalf.

Just before we were leaving the hospital the paediatrician came to do a final check of Sammy. She’d mentioned earlier that she had seen red eye reflex in one eye but Sammy was being ‘uncooperative’ with the other eye, so she just wanted to double check. Very quickly I sensed something was wrong. She spent a lot of time looking into his eyes and eventually took him out of the room to examine him further with the assistance of a midwife. She came back in and told me that she couldn’t find red eye reflex in either eye and that Sammy would need to be seen by a specialist asap. She sat with me and made the call to the ophthalmologist who agreed to see us the following day. We left the hospital with a diary full of appointments and heads swirling with questions. 

We quickly learned that Sammy had cataracts in both eyes and he was monitored over the next few weeks to decide whether surgery was necessary. Eventually, at 8 weeks old, Sammy had surgery to remove the lenses in both his eyes.

Shortly after surgery we started our contact journey. To begin with it took the entire family, singing, dancing, flashy toys, whatever we could do to distract Sammy as we put his lenses in every morning and take them out every night. It literally used to take us hours and the amount of heartache it caused was huge but we knew we were doing it for the right reason and that Sammy would understand eventually. I can now get them in and out within seconds by myself but, at 19 months, he’s getting stronger and more resistant and I know things won’t always be this easy. As our amazing optometrist says this is a rollercoaster of a ride. 

Sammy is an amazing little guy who is far more adventurous (and cheeky!) than his older brother and sister so he continually keeps us all on our toes. Nothing has held him back so far and I can’t imagine anything getting in his way in the future!

RJ entered this world quite dramatically in May 2020. It was a rough 22 hours for me (mum) and RJ but he came into this world happy and healthy. 

We stayed in hospital overnight and the next day one of the doctors came to do an all over check of RJ. When it came to shining the torch in his little eyes, the doctor noticed something wasn’t right. He went to get another doctor to double check and they both agreed RJ had a “complete black out” in his right eye. They explained to us that RJ had no red reflex in that eye and further investigation would be needed.  
 
Twelve days later we were taking RJ to the ophthalmologist clinic at the children’s hospital. During the COVID pandemic, only one parent was allowed in the room at a time. I took RJ in for the eye drops which dilated his eye, my poor boy screamed and cried and I couldn’t handle taking him in for the examination so dad did that part. When I saw the doctor come out into the waiting room to get me, I knew the news wouldn’t be good. I sat down with my husband and baby boy while the doctor told us RJ was born with a cataract in his right eye and of course the tears started. The surgeon came in to speak with us, but I barely took in anything she was saying other than our baby boy would need surgery. 
 
At 8 weeks old, our boy had the surgery to remove the cataract/lens in his right eye and our journey officially began. I never knew there were so many different types of eye drops!
 
Soon after surgery we started seeing an optometrist for contact lenses (and glasses for back up) and started regular visits with the ophthalmology clinic.
 
At age 1, RJ now wears a contact lens and patches 6 hours a day... well, more like 3-4 hours a day now that he’s old enough to take the patch off himself.
 
RJ has had some complications since surgery. He reacted to the solution we were cleaning the contacts in, he has glaucoma (high pressures) which is currently managed with eye drops and his eye turns in. We recently made the decision to do the surgery to straighten his eye which is next up on our journey
 
We are so, so grateful to the doctor who picked up RJ’s eye the day after he was born. So many times, things like this can go missed.
 
It’s a hard journey and one that will be lifelong for our boy, but we will do the best we can and take it day by day.
 
Looking at RJ and seeing how happy he is all the time – you wouldn’t think he has been through so much!