Tyler has retinopathy of prematurity. It is known as ROP. It is not a genetic disease and there is no cure. It is strictly a product of prematurity. When a baby is developing their eyes are maturing in the safety of the womb. The eyes stay fused for a certain amount of time and they start developing a sensitivity to light pretty early on. What is NOT suppose to happen is having those immature eyes exposed to oxygen, especially high doses and oxygen that isn’t stable. In fact, when the eye is introduced early to oxygen, abnormal stimulation is made to the vessel that are growin on the eye.
Eyes that have ROP have vessels of the eye that have grown abnormally and the degree in which they have grown abnormally will determine what happens to the retina. The higher the degree of abnormal vessels the more the retina is harmed. The more the retina is harmed the more the vision is damaged.
When doing ROP surgery the retina is basically burned back on in hopes of reversing the vessels from continuing the abnormal growth. Once the retina is burned back on the eye, the vision has lost its acuity or its sharpness.
Tyler has ROP stage 4 plus disease. Which means that when they found this condition it had gone from not very severe to VERY severe in a very short amount of time. They quickly did surgery and we knew that he had some vision loss but we didn’t what or how much or what it would impact.
With his ROP he has nystagmus which is continual movement in his eyes. Having nystagmus also limits his vision. His nystagmus is also a result of prematurity, though his specialists are unsure about whether it is his brain damage ( I doubt) or the ROP ( which I think it is), this also impacts the acuity as well.
With the ROP and the nystagmus his acuity is very limited. However, he has some amazing functional vision. His functional vision is what he does with his limited vision and his acuity. This functional vision has made it so we are always unsure of what he can and can’t see.
This last week it was determined that he is considered legally blind. This is not something that we haven’t already figured out. What is hard to understand is what does he see. When using google and asking other’s we have found that while sitting in the eye chair at the office he can see the big E on the chart but it is fuzzy. The reason it is fuzzy is because he has low vision acuity. But we know he can see it because he has functional vision that he uses.
Tyler will need to have help for the rest of his life to use the functional vision he has along with being able to use the vision acuity that he has. He sees colors, shapes, and can pick out letters and can manevuer around items, objects and walls. He has a hard time seeing some balls, has no depth perception and can trick pretty much everyone with what he can and can’t see.
What we do know is that knowing he will never see certain things is heartbreaking, we know we will onintue to bring his world to him. We will show him in pictures, books, and on the computer all that he will miss. We know that technology will make his life easier. He will get to be best Ipad user in the house and will be able to do anything he wants to do.