This month we’re bringing awareness to COATS Disease! One of our Dentists, Dr. Luis Miron, has had first-hand experience as a parent to a child with COATS Disease. It is a rare condition with abnormal development in the blood vessels behind the retina. The blood-rich retinal capillaries break open, leaking the serum portion of the blood into the back of the eye. The leakage causes the retina to swell and can cause partial or complete blindness.
We asked Dr. Miron to share his story, the challenges that they have faced, and how they have learned to overcome them.
“It started when we first took Santiago (AKA Santi) for his annual eye exam at the Connell Clinic Santi was around three years old then, and after this eye exam, the doctor recommended prescription glasses.
We noticed that he didn’t like his glasses. He was constantly looking over them, and we thought maybe he didn’t need them. We scheduled a second appointment a few months later, and the doctor said he still needed prescription glasses, but his prescription needed to be updated. There was nothing out of the ordinary.
Santi got a new pair of glasses, but still, he had a hard time keeping them on. My wife continued to wonder if he needed glasses, and during Santi’s checkup with CBHA’s Pediatrician, Dr. Gabriel Barrio, she voiced her concerns about Santi’s eyes. Dr. Barrio referred us to a pediatric eye specialist in Spokane. By the time we saw the specialist, a year had passed since his last eye exam. The specialist confirmed he needed prescription glasses, but they had discovered lipid sediment in the back of his left eye.
He didn’t give us a final diagnosis or an idea of what the lipid sediment was, but he referred Santi to a pediatric retina specialist at Casey Eye Institute in Portland, Oregon. As parents, we began worrying because we didn’t know what this meant and knew something was wrong.
The specialist had given us a picture of Santi’s eye, so we sent it to a family friend, a retina specialist in Guatemala, where we are originally from, and he was the first one to mention COATS disease.
On April 14th, 2023, we saw the retina specialist in Oregon, and they confirmed that it was COATS disease and that Santi needed laser eye surgery under general anesthesia right away!
Santi’s diagnosis was an incidental medical finding. He never showed any symptoms of COATS, but we were fortunate to have found out about his condition at an early stage because we took him to his annual eye exam.
Santi’s surgery was a success, and we were glad to know that no vision loss had occurred, but this isn’t a cure. He will need checkups every six weeks to three months during for the rest of his life.
As parents, we worried about how our son’s life would look. This created constant worry about how many more surgeries he would need and how often he would need them. We have faith that Santi’s condition, at some point, will be stable, and surgeries will be further apart or possibly not needed, but our main concern was making sure Santi still got to be a kid and have fun!
He currently participates in different sports like Jiu-Jitsu, soccer, and swimming. He uses protective prescription glasses during his sports to see better and protect his healthy eye. Santiago is little, but he has been a champion going through tests, surgery, injections, and eye drops which he really doesn’t like, but he becomes more cooperative after we tell him that all of this is so his eye gets better.
Santi will need a second surgery for his eye on September 12, 2023.
We’re so thankful for the Eye Care team at CBHA. They supported us and helped us get better pictures of Santi’s eye after his first consult with the specialist. CBHA’s Optometrists, Dr. Jason Bleazard and Dr. Brandon Walters, also helped explain a little more about COATS when we were first told about his diagnosis. I can count on them for anything Santi needs regarding his vision.
If you are a parent with a child with a rare disease, I want to encourage you to let your kid be a kid. Let them live a happy life. Just be a little more cautious of their condition and how to protect that, but let them live as normal as possible.”
We never hear about COATS Disease. The only way of finding it is through a vision exam. So please don’t skip your kid’s yearly checkups when they are young. There are cases that the disease can be at such an advanced stage that it can be impossible to save the child’s eye. This is why it’s important to catch it at an early stage.
CBHA’s 5K Color Run is an excellent way to create awareness of these rare conditions, like Santi’s. It’s such a fun way for to interact with the community, show our support to other families and listen to their stories.
Be part of the cause at this year’s Color Run, and show your support towards cancer survivors. Sign up for the run now!