Lucie was born on 25th January 201x, the smallest of our 3 kids and covered in vernix. While getting her ready to feed for the first time, Lucie opened her eyes and looked up at me. “I think she has some vernix in her eye” I casually said to one of the midwives, thinking absolutely nothing of it, and got back to staring at my baby. 

We were looking so forward to our 20 week gestational ultrasound, despite this being on the week we moved from far north Queensland to Melbourne! My partner had started a new job and was unable to attend the appointment, so I took mum. I was exhausted but excited before walking into the appointment. Half way through the scan the lady excused herself, saying "I'll be back in a minute", only to not return for 15 minutes. ​She popped her head into the room and said "Sorry for the delay, I am just waiting for the doctor". 

At our 20 week pregnancy scan we were told our daughter had a possible cataract in her right eye. We were prepared for this, as apparently it wasn't a "big deal" and would mean a brief surgery and all would be well.

Alice was 11 days late and after a tricky birth we were so excited to finally have her with us, only to find out she had no red light reflex in both of her eyes.  My midwife mentioned the words "blind" and "syndrome".  As first-time parents this sent our minds spinning!!

​​Our daughter, Kate*, was 5 weeks old when I thought that something was not right with one of her eyes. I couldn’t put my finger on what it was, but one of her eyes didn’t track the same way as the other and appeared to be lazy. I booked a GP appointment the following day only to be told that everything was normal and it was just a developmental thing. I wasn’t convinced so continued to ask questions at her 6 week check with our paediatrician and child health nurse. Both gave me the same feedback as our GP – it was a developmental thing. In the coming weeks I saw another GP and two more child health nurses and kept getting told the same thing. I was beginning to feel like a hypochondriac, but I just knew that something wasn’t right.