Diagnosis: Coats’ Disease
Tina had no idea about any dangerous eye conditions in children nor did she know about the “glow” (leukocoria) until she posted a video and picture of her son, Miguel, on her Facebook page back in March of 2016.
Her close friend messaged her immediately and said, “Tina, I do not want to alarm you, but I heard that any white pupil in a child’s picture can be a bad sign.” Of course Tina panicked, googled a thousand things, and quickly took Miguel to the general practitioner (GP) the next day with the pictures and information she had found online. The GP had never heard of any of the eye conditions Tina was referencing and so he brought in a colleague who advised that Miguel should be referred to an ophthalmologist. Tina waited anxiously for this referral letter and when it finally came, Miguel was booked for an appointment a month later. She panicked and said, “No, that is too long. What if it’s serious?” Tina persisted and the eye clinic finally agreed to see Miguel the next day.
At the appointment, Miguel was first tested for normal eyesight. As soon as the doctor covered Miguel’s right (unaffected) eye, Miguel panicked. The doctor looked at Tina and said it seems he may have no vision or only limited vision in his left eye. Tina’s heart broke for her son.
Tina waited with Miguel to be seen by yet another doctor – this one specialized in eye conditions. As soon as the doctor looked into Miguel’s left eye, he said he thought it may be Coats’ Disease or possibly Retinoblastoma.
He said he would urgently have Miguel referred to Great Ormond Street Hospital in London for a full diagnosis. After checking his eyes this time, Dr. Henderson confirmed Miguel’s diagnosis of Coats’ Disease. Miguel was two years old at the time. Tina was so relieved but still heartbroken and filled with guilt. As a parent, she just did not want him to lose his eye.
Miguel is now 4 years old with late stage Coats’ Disease and he is completely blind in his left eye. Miguel’s doctors explained to Tina’s family that it could take up to 10 attempts to stop the blood vessels from leaking into Miguel’s eye but in the end he needed only 5 surgeries to stop the leaking vessels.
Now Tina is happy to announce that Miguel’s eye is stable with no active Coats’ Disease. When he reaches 6 years of age, he will have corrective surgery to straighten his eye.
“The beginning is always so hard and the internal guilt you hold at first does not last. In time, as a parent, you look at your beautiful child and realize how strong, brave and happy they are considering they have only the use of one eye! These children are still so capable and willing to continue as normally as any other child. I refused to label Miguel as disabled but I made sure to educate him about his disease as he began to grow, not keeping it a secret. I find that making sure your child knows what is going on with them helps the parents cope better, too. The child will learn to protect their eyes themselves. For example, Miguel wears protective glasses all the time especially outdoors around other kids in case he gets something hit into his face or his eye. This could cause the blood vessels to leak again if there is any trauma around the eyes. So I talk to Miguel and am just honest with him and he understands at such a young age which is incredible. I’m so very proud of him and how far he has come. He has also taught me so much about myself and made me stronger too! When I had Miguel, I was a single mother until last year so it was doubly hard not having any support, even from family. I’m grateful I have amazing friends for they have stuck by Miguel and me every single day. We are grateful for our journey and thankful it was not worse. Seeing children and families go through other serious eye conditions is incredible and inspiring. For now we are just hopeful that the leaking of the blood vessels does not return and grateful that our friend warned us about the glow in time to save his eye.”
– Tina Doughty