This is Oliver. He is 4 years old and is diagnosed stage 3 Coats’ Disease. We live in sunny Queensland, Australia. Oliver actively participates in martial arts, bjj, gymnastics, and swimming.
It’s hard to determine when his Coats’ journey truly began, but I started noticing at age 2 one of his eyes sometimes inverted. I began to question whether he had a lazy eye, to which I then decided it needed to be seen to in order to patch correct. I asked for a referral in order to be seen on the public system. Twelve months passed and still we were no closer to even securing an appointment for a consultation. One day he got an eye infection (in the good eye – now I reflect, he had an awful lot of them growing up and I put it down to daycare). He has always been a “boys boy”, a messy one at that, and suffice to say his personality differed greatly to that of his highly hygiene-conscious older brother, so much so, that I decided his eye required patching as to avoid him scratching at it and making it worse.
Well, this was the moment! He began crying and reaching for me “Mummy, I can’t see you. Mummy where are you?” My heart sank and I just stood there holding him while trying to cover my own tears. I stayed up all night and researched and researched and the only information that fit what I was seeing was Retinoblastoma. I was floored, scared for my child’s life, scared for his future. All this time I knew something wasn’t right and I was irritated that the public system was taking this long. I was no longer willing to wait around so I went to my GP and demanded a referral to see a Private Eye Specialist. She concurred after hearing me out and asked an optometrist to see him that day to try and ease my mind. The optometrist visit confirmed there was indeed an issue and Oliver’s retina was detached and almost confirmed the thought it was, in fact, Retinoblastoma.
I can’t describe how this made me feel – he had just turned three a month prior to this. I watched my mother battle breast cancer on chemo and it almost killed her, he didn’t understand a thing so as his Mum, I just had to swallow all my emotions and push through, ensuring I was doing what needed to be done in order to handle this situation.
November 24, 2017. I’ll never forget the day. It was our specialist appointment. I was a mess internally, she examined the eye and after a long pause I was told he did not have Retinoblastoma (relief!) rather stage 3 Coats’ Disease. Coats’ Disease? That has to be better than a brain tumor, right?! She said he needs surgery to try and close the vessels and we have booked him in for next week. Wow, this is crazy! I was told this was the most aggressive case she had seen in such a young child, but she gave me hope that we would have a positive outcome. I agreed to surgery and in the week lead up I suppressed any feelings I had so that Oliver was able to be calm and comfortable about what was going to happen. On the day of surgery, I watched him pass into his anesthetic dreams and was asked to leave for the remainder of the procedure. Nervously, I waited in the cafeteria for the phone call to tell me he was awake in recovery. The whole time I was thinking, “what if he doesn’t wake up? How will I ever live without him? Did I make the right choice, will this help?” We did this 4 more times, a total of 5 surgeries in less than a year – 1 surgery per month. And each time I prayed for his life and that he may feel less pain after the fact.
Here we are 2019 a few months shy of the 2-year mark and we are now on a 6 monthly check for pressure monitoring. None of the surgeries successfully closed the vessels and it feels like the doctors just gave up and want me to admit defeat and wait for the inevitable. They will only operate to restore vision but gave me the impression that all the stuff Oliver endured was to save the eye itself.
At the age of 10 months, Oliver had the tell-tale “camera flash” sign I now know as a Coats’ indicator. I never once considered this to be anything other than a bad photo with a flash, given there is so little information about this disease, let alone education and signs to look for in babies/children. I was so confused with it all. This disease isn’t fair, but what disease is? He has his life and we have him so all you can do is continue life and be thankful for all you do have rather than one thing you don’t. I hope for more information and faster diagnosis. It was too late for us to do much of anything because I waited too long and trusted doctors who told me I was crazy and being able to see through an eye was “normal.” Follow your instincts and push for better health professionals.
I’m not bitter, I’m not sad, and I’ve come to terms with what MAY happen if he does indeed lose his eye. All I know is that he is happy, active, funny, sweet, kind and stronger at age three than I have ever been in 29 years of living.