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Mum Nadine Clair shares daughter Violet’s sight loss journey

Photo of young girl - Violet

Violet had just turned one when we noticed something different about her left eye which seemed to be changing colour from brown to green, while the right remained brown. At that time I didn’t think too much of it as I had previously Googled about an iris changing colour, which, as I read over and over, was perfectly normal for babies of that age.

However, on one particular night the lamp was shining on to Violet’s face and this time there was hardly any colour to her iris and no dominant black pupil as it was white so we did what most concerned parents do at that stage, and started to Google “No iris colour, clear pupil”. I did this all night, with the same results, that it could be serious. My heart sank as I looked for more information. I came across the ‘Know the Glow’ website which is a support and awareness page for children who have ‘The Glow’ which in medical terms is called ‘Leukocoria’ literally meaning white pupil. This is a lack of red reflex in the eye. So, when we take photographs sometimes we get red eye, which shows a healthy eye, however the white or yellow glow could be more serious. They encourage parents to be alert if a glow is seen through flash photography (visible in more than one photo, as sometimes it can be the angle the light catches the eye). So, I started looking at photo’s I’d recently taken and there it was, photo after photo  ‘the glow’ in my baby’s left eye. I knew we had to take action so the very next day I booked an emergency GP appointment.

The day dragged awaiting the appointment. I couldn’t wait for him to tell me I was an over observant mother and there was nothing wrong. As we sat down and explained what we found the Dr looked in Violet’s eyes and confirmed there was no red reflex, but didn’t seem concerned and said he’d refer, if we wanted, to an optometrist at our local hospital, but he really didn’t think it was anything.

The referral was done and the next available appointment was 5 months!! I knew I couldn’t wait, as much as I wanted to hear those words by a Dr ” I don’t think it’s anything” I had a strong feeling that it wasn’t right. I decided to book an opticians appointment, if anyone knows eyes it them right? Wrong they had no idea what was wrong, she explained there was a white cloud in the eye and told me to wait for the referral in 5 months. Not one person made me feel comfortable to wait that long, and so we decided to go straight to Moorfields eye hospital, where we had the most caring and amazing Dr we could have wished for Violet. They dilated her eyes and began to look, he agreed we did best by taking her there and he diagnosed Violet with Leukocoria (white pupil) and referred us to a paediatric eye specialist for further tests.

The next day I received a call from a cancer nurse specialist, which was a total shock. I can’t really remember that call very clearly as most of it was spent sitting on my kitchen floor blocking the 3 kids from coming in and seeing me so distraught. The nurse was amazing and explained the Dr felt it necessary to refer for immediate investigation of Retinoblastoma (childhood eye cancer). There’s no words to explain how those words make me feel. These things don’t happen to your family.  Suddenly I didn’t feel so bad for pushing for more checks, and was glad I Googled so much that night. But I also had a tremendous amount of guilt …. what if it is cancer? Why didn’t I do something sooner? Something as parents we all do.

From the phone call to our appointment was a whole 7 days, doesn’t seem much, but anyone who has been through this will tell you it feels like a year! Our world fell apart that week not knowing what was happening, trying to get through the week as normal as we could, playing with the kids and keeping smiles on our faces throughout the day, and then spending every evening looking for more information, because hey, who really needs sleep anyway!

On 28th February (World Rare Disease Day) Violet went under investigation at The Royal London Hospital. It was a tough day, but the staff were amazing, the play leaders were out of this world and we had a nurse specialist beside us throughout. When the investigation was over, her consultant came to see us with the news that it wasn’t Retinoblastoma. Huge sighs of relief came from us both and even Maxine, our nurse, who had spent 3 hours in total on the phone during that week trying to prepare us as a family. We were over the moon it wasn’t the Big C, but reality soon hit down, if it’s not that what was it?

Violet was finally diagnosed with Coats’ disease, a very rare condition that affects roughly 1 in 100,000 boys and only 1 in 3 are girls. It is not hereditary, she was born with this, and the causes are not known still because of a lack of research and funding.

After receiving Violet’s diagnosis, we left the hospital and felt quite lost, because we had been given this name of a disease that our Baby has but no information on it. I came home and spent hour after hour while everyone slept trying to look for information on Coats’ reading the same generic paragraph over and over again. There were no diagrams and as I’m not medically trained I could not have told you where parts of the eye were until now. It was a very lonely time, we hadn’t been given any support networks and I found out there weren’t any for Coats’, which is why we set up Violet’s Glow. It would have been great to have had a number to call just to have someone at the other end of the line to reassure us it was going to be ok and to answer the thousands of questions I had back then. Instead I turned to Know the Glow in the U.S. and they helped me answer some of my questions and supported me through to Violet’s first appointment at Great Ormond Street. They kept in contact at all times and were honestly amazing.

With Violet’s Glow I hope to raise awareness of Coats’ and other Glow related diseases, to all parents and health professionals that may not be aware of these conditions. We aim to be able to have leaflets made to raise awareness and even the possibilities of changing the child eye health check timeline. In my opinion one check between 0-4 is not enough because had Violet had a 1 yr check, she may have had her sight saved. In my opinion the simple red reflex test needs to be checked yearly in infants and this could save so many children from sight loss.

For more information on violets glow, please visit Twitter https://twitter.com/VioletsGlow0

and the Facebook Group https://m.facebook.com/groups/182240252405699