The hospital handout we received on Retinopathy of Prematurity (ROP) after London received the diagnosis describes it this way:
The retina is the inner lining of the eye that receives light and turns it into visual messages that are sent to the brain. If one thinks of the eye as being like a camera, the retina functions as the film. Blood vessels that supply the retina are one of the last structures of the eye to mature; they have barely completed growing when a full-term baby is born. This means that a premature infant’s retina is not yet completely developed. For reasons not yet fully understood, the blood vessels in the immature part of the retina may develop abnormally in some premature infants. This is called ROP.
Every NICU employee did a fabulous job explaining this to us. However, as a parent, this little bit about ROP tends to stick with you more than anything else:
In the most severe cases, the abnormal blood vessels form scar tissues, which pull the retina out of its normal position in the back of the eye. This problem results in severe loss of vision of blindness. Fortunately, this occurs only rarely and laser treatment can often prevent the retina from detaching.
That “fortunately” is so reassuring. If you aren’t catching my drift, I am being sarcastic. Perhaps, if ROP was the only thing we had to worry about while London was in the NICU, the “fortunately” would have been more promising to us, but it was hard to take any comfort in the prognosis of ROP after we were already dealing with chronic lung disease, fluctuating sodium levels, and a brain hemorrhage.
A week or two after London’s ROP diagnosis I wrote an email update to friends and family:
Kate and I found out today that London will most likely need glasses throughout her life. There are worse problems to deal with, but I haven’t taken that very well. Glasses are just another thing on her poor face, which has never been truly free of clutter.
We received many responses, but a few stood out. These were the responses that assured us that glasses are not really a big deal and they do not look bad. I know these people were trying to comfort us, but I don’t remember any comfort to be found in their responses. What does stand out about that moment was the realization that these people will never fully understand what London, Kate and I are going through because their babies did not have the same start to life as London. I thought I had made it clear in the email why I did not like the idea of glasses, but let me try again…
As a parent, no matter how long your child is in the NICU, you long for a time when that child won’t need some medical accoutrements to stay alive, to function normally. You crave a purity for your child, the purity many full-term babies get to have, the purity of a perfectly functioning, little body with no attachments, IV lines, or patches on the face. You want your child to experience this and you want to look upon your child when they do. When we heard glasses were a possibility, we were moved further away from that purity. After months in the NICU, something as simple as glasses can be a heavy burden. That’s why I did not take the news well.