One Friday afternoon, I was sitting on the couch with my 18-month-old Lola singing songs. I noticed a strange white cloud in her right eye. I had never noticed this before. It was quite dense and took up most of her pupil…. So as any worried mum does I googled it. BAD IDEA! Then in a panic I tried to book an appointment at the doctor to put my mind at ease, but being a Friday afternoon before a long weekend, they were all booked out. So, my next thought was the optometrist. We could go straight in.
The optometrist looked at Lola’s eye and said there was definitely something in it. She was unsure what and was going to refer us to an eye specialist. While waiting in reception for her to write a referral, I was asked to go back in to see the optometrist. This time I went in while my husband waited with the kids in the front. The optometrist told me to sit down, so I did… she then told me she thought Lola had something called retinoblastoma, a tumour on her eye that, if not caught early, can be fatal. I felt like I was dreaming. This was the terrible thing I had just read about on Google before we had come. We left devastated with our referral. We started immediately calling all eye specialists to try to get Lola seen by anyone who could give us more information. Again, being the long weekend, no one could help us. We were left all weekend with the horrible news that our baby girl could possibly have a life-threatening disease. That was the worst weekend of my life.
Come Tuesday morning we did some more ringing around and found the Eye and Ear Hospital in Melbourne (which had we known, was open all weekend). We went straight there and Lola was seen immediately by a specialist. A few tests including an ultrasound on her eye and we had the news we were hoping so desperately for. NOT CANCER!! However, we were told she had a cataract. Wasn’t this something only old people get?! We were then referred to a children’s hospital to see yet another specialist. Seen again almost immediately, we were then told at Lola’s age (18 m) and considering the density of her cataract there was no hope in removing it, and to just leave it as is, she was blind in that eye now. We were told that over time her eye would become very lazy (it always was slightly lazy but the health nurses reassured me that it would get stronger by the time she was 2) and eventually it would hang to the side with no muscle control. We were told that it being detected so late, her brain would have not learnt to use the eye, and so now it was too late.
We left emotionally drained and gutted but so grateful that at least she didn’t have cancer, at least she had full vision in her left eye…. Months went on and I just couldn’t get past the idea that in this day and age, there was no hope. It seemed like we just had to live with that answer and make the best of what we had. I searched and searched for more info and finally found the Congenital Cataract Page on Facebook. After reading so many posts and asking lots of questions, I was told about an amazing surgeon in Melbourne to go visit. So off we went, we were told to bring in as many photos as we could of Lola and to try to see if any had a red eye reflection. Finally, after asking lots of friends to check their photos too, we found 2 photos. One at age 14 months with a red eye reflection and another at 16 months with a white flash in her eye. This was enough proof that Lola possibly had some vision in her right eye and we were faced with the option of whether to have surgery or not. After many tears and pro/con lists we decided to give Lola the best chance we could for her to be able to use her eye.
At age 2 years + 4 months Lola had her lens removed and an intra-ocular lens (IOL) implanted in her eye. The recovery was quick and painless. We followed the eye drop routine and then started patching half her waking hours. I honestly thought this was going to be impossible, but to our amazement Lola could see… not very well but there was vision there. We were amazed, as months went on, the vision improved and with no negative side effects Lola was an A+ patient. She had done what was supposedly impossible. She had sight in her right eye!!
Now 4 years later Lola doesn’t need to patch, she has reached her highest potential and held it there for 12 months. She has vision, not the best of course but she can see, and we are so grateful for that. She has good peripheral vision which we have been told is the most important, as she can already see perfectly in her left eye, having that side vision is now an added bonus she didn’t have. Her ‘lazy eye’ only really shows if she is very tired or is over focusing for a photo. She now wears trendy bifocal glasses to help now she is at school, and it helps protect her eyes from foreign objects as a bonus.
I wanted to share Lola’s story to tell everyone to not give up hope. That if a decision doesn’t feel right, ALWAYS get a second opinion. Do a lot of research until you feel satisfied that it’s the best option for you and your family. My only regret is wishing we had pushed further earlier when she was first diagnosed, as the results may have been even better again.
I will forever be thankful to the other amazing parents on the Facebook page for all their knowledge, advice and patience with me with my many questions and tears to get to this outcome. Sometimes social media can be an amazing thing!