Coping With Retinopathy of Prematurity

My daughter layla was born @ 26 weeks weighing 1lb 11 oz. Believe it or not i had a second pre-term baby same gestational age and weight. My first has ROP in both eyes. she has no vision in her left eye at all since a few months after birth, we have been through 7 surgeries to save the right eye in one year. She is to the point where they have to wait and see what is going to happen. She has had everything from a full retinal detachment to an ulcer to a cateract. Then oil placement to a buckle in the eye to gas in the eye. After the gas in the eye she has not been able to see a thing for 7 weeks. So she is completely blind, since you can’t see through the gas. Now that the gas is going away, she is hemmeraging into the eye. So she has a mass amount of blood which is not allowing her to see a thing.

I have been in the ICU with both my girls listening to how the parents don’t want the eye exam done, my daughter is a example for all of you! You need to have your childs eyes checked!! It took me 2 years to find that there was a vision problem. If you let it go you will be dealing with a very sad situation, your child won’t be able to see.

I am lucky enough that my second daughter is free and clear of any eye problems, but that is due to the hospital checking her eyes every 2 weeks. Make sure your hospital checks your baby every 2 weeks so you don’t end up in a devastating situation where your 6 year old ends up not being able to see a thing. Talk about depression setting in, my poor baby. So make sure your child is monitored!! No matter how your babies eyes may look after being checked. The most important thing is to try and do everything under the sun to make sure your child can see.

Believe me if i knew then what i knew now my daughter would be better off, and doctors don’t exactly help you out 100%. You have to become your child advocate!! I know from experience, it’s sad but true, you have to harass people to care for your child and get them the right treatment!!

Monique