Diagnosis: Coats’ Disease
Manda and her husband Bryan welcomed their fourth child, Kaydn, into the world in May of 2018. Kaydn was born six weeks early and spent his first nine days in the neonatal intensive care unit in Sioux Falls SD. Despite being born premature, Kaydn left the hospital completely healthy and spent the first six months developing normally just as their other three children had. This all changed on December 19th , 2018, with one single photograph.
Manda took a flash photo of Kaydn and noticed a golden “Glow” in his pupil.
She did not know what this “Glow” was but showed it to her husband, they were both concerned. She then sent the photo to several friends and family asking for their advice. Not one person had an explanation for the Glow, but each encouraged her to have Kadyn’s eyes checked.
The next day Manda took Kaydn to his pediatrician. Once the pediatrician looked into Kadyn’s eyes, she was also very concerned. She told Manda that she was not able to diagnose Kaydn but that Manda needed to take him to see a specialist right away. Since the nearest specialist was over two hours away, Manda took Kaydn to a local optometrist upon the pediatrician’s request. Kadyn’s eyes were dilated. The doctor told Manda she was very sorry to tell her that there was a mass behind Kadyn’s right eye. She explained that this mass could be very serious and sent her to the University of Minnesota Children’s Eye Clinic the next day.
Here the family met with an ophthalmologist. After the examination with dilation, the doctor confirmed that Kaydn had a mass in the right eye but was unsure what the mass was. The doctor than scheduled an exam under anesthesia for the next day where they would hopefully find out more of what this mass in his eye was. After the exam, the doctors were not able to definitively tell if Kaydn had Retinoblastoma or Coats’ Disease, or possibly even a combination of both. However, they did tell the family that, regardless of the cause, Kadyn’s condition was very advanced. His retina was completely detached, and he was going to have prolonged future pain that would eventually lead to the removal of his eye.
The only treatment suggested was removal of the eye, enucleation.
With that news, Manda and Bryan didn’t hesitate, they knew the removal of his eye was a necessary procedure to keep their son happy and healthy. One week later, following the Christmas holiday, Kaydn had the surgery to remove his eye. Manda and Bryan had a lot of mixed feelings prior to the surgery but knew they had to stay strong for their son and knew that he was in good hands. Before the surgery, the doctor came into the pre-op area to do her assessment when she noticed his eye looked bigger than the other and suggested that maybe the pressure had gone up since their last visit just a week prior.
Since the operation, Kaydn has been doing very well.
He’s the same vibrant, thriving 8- month-old. It seems as though his eye removal hasn’t affected him very much at all. Manda and Bryan can’t express enough gratitude for the care and the steps taken to save their son from future pain with his eye.
Late in January of 2019, the pathology report came back for Kaydn. The family learned that Kaydn does not have Retinoblastoma. He has been officially diagnosed with Coats’ Disease. Kadyn’s left eye shows no signs of the disease and they do not believe he will have any future issues. However, the doctors encourage regular eye exams on the left eye to be safe.
Manda and Bryan are very glad that they listened to their inner voices telling them that “the Glow” was more than just a strange flash from the camera.
They are frustrated that “the Glow” is not more well-known as they have come to the realize just how important this sign is. They know it can help lead children to earlier diagnosis preventing further problems. They hope that by sharing their son’s story they can spread awareness of “the Glow” to many other families who may not have yet discovered their own child’s “Glow.”
