Till I had a preemie myself, I had never even heard of the term ROP (Retinopathy of Prematurity), let alone know what it was. In the preemie world though, being affected with ROP is pretty much par for the course, especially in case of extremely early as well as extremely low weight preemies - two categories into which Baby A (BA) very squarely fell.
We got an amazing ophthalmologist to treat BA. When we gratefully thanked her at the end of it all, she simply said "You can best show your gratitude by spreading the word about ROP. Too many innocent preemie babies go blind due to lack of awareness about ROP." I am doing my part here.
If you or someone you know has a preemie, please make sure that the preemie baby is looked at by a ROP speciality ophthamologist as soon as possible. Typically, the monitoring starts at about 4 weeks after birth for the very early preemies. Later preemies get looked at pretty much as soon as soon they get into the NICU. Thereafter, make sure to diligently follow the advise of the ophthamologist and keep up all the follow-up appointments without fail.
Here is a primer about ROP as culled from Wikipedia and personal experience:
What is ROP?
ROP statnds for Retinopathy of Prematurity. It usually affects the eyes of premature infants and is thought to be caused by the disorganized growth of retinal blood vessels.
Who is at risk of ROP?
All premature infants are at risk of being affected with ROP. Very low birth-weight infants (infants weighing less than 1.25kg at birth) and/or at very low gestational age (less than 31 weeks) at birth are especially at very high risk.
How is ROP detected?
The ophthamologist uses tools to look at the eyes and the retina. This procedure is not painful but very uncomfortable for the baby. So, typically, babies cry a lot during the test which usually lasts for less than 1-2 minutes. It is a good idea to not feed the baby upto an hour before the test since the excessive crying might lead to the baby aspirating (getting food into the lungs) the feed.
What is the treatment?
Once ROP is detected, depending on the stage ROP is in, the severity is determined. Lower severity ROP might resolve on its own without treatment. In that case, the ophthamologist simply monitors the baby periodically to make sure everything is still alright. In case of ROP of higher severity, the treatment could be laser ablation (to remove the abnormal blood vessels) or injection into the affected eye with Avastin.This treatment needs to be started as soon as possible after detection since severe ROP progresses rapidly.
What is the prognosis?
Provided ROP has been detected early enough and the treatment started promptly, success rate is pretty good in most of the cases.
What is the risk of not treating ROP?
If the preemie has a severe version of ROP that is left untreated, it eventually leads to retinal detachment and blindess.
So, please, if you know of someone who had a preemie recently, make sure that they are aware of ROP and they get their baby looked at by a ROP specialist. This is especially true in countries like India where not all hospitals make it standard protocol to get preemies checked out for ROP. You could be saving an innocent baby from a lifetime of blindness.
Resource
Sankara Nethralaya Eye Hospital, Chennai, India has excellent ophthalmologists who evaluate, diagnose and treat ROP in dozens of preemies from all over India and from other countries every day. BA was treated at Sankara Nethralaya.
In general, the neonatologist attending to your preemie should be able to direct you to the appropriate specialist for evaluating ROP.
We got an amazing ophthalmologist to treat BA. When we gratefully thanked her at the end of it all, she simply said "You can best show your gratitude by spreading the word about ROP. Too many innocent preemie babies go blind due to lack of awareness about ROP." I am doing my part here.
If you or someone you know has a preemie, please make sure that the preemie baby is looked at by a ROP speciality ophthamologist as soon as possible. Typically, the monitoring starts at about 4 weeks after birth for the very early preemies. Later preemies get looked at pretty much as soon as soon they get into the NICU. Thereafter, make sure to diligently follow the advise of the ophthamologist and keep up all the follow-up appointments without fail.
Here is a primer about ROP as culled from Wikipedia and personal experience:
What is ROP?
ROP statnds for Retinopathy of Prematurity. It usually affects the eyes of premature infants and is thought to be caused by the disorganized growth of retinal blood vessels.
Who is at risk of ROP?
All premature infants are at risk of being affected with ROP. Very low birth-weight infants (infants weighing less than 1.25kg at birth) and/or at very low gestational age (less than 31 weeks) at birth are especially at very high risk.
How is ROP detected?
The ophthamologist uses tools to look at the eyes and the retina. This procedure is not painful but very uncomfortable for the baby. So, typically, babies cry a lot during the test which usually lasts for less than 1-2 minutes. It is a good idea to not feed the baby upto an hour before the test since the excessive crying might lead to the baby aspirating (getting food into the lungs) the feed.
What is the treatment?
Once ROP is detected, depending on the stage ROP is in, the severity is determined. Lower severity ROP might resolve on its own without treatment. In that case, the ophthamologist simply monitors the baby periodically to make sure everything is still alright. In case of ROP of higher severity, the treatment could be laser ablation (to remove the abnormal blood vessels) or injection into the affected eye with Avastin.This treatment needs to be started as soon as possible after detection since severe ROP progresses rapidly.
What is the prognosis?
Provided ROP has been detected early enough and the treatment started promptly, success rate is pretty good in most of the cases.
What is the risk of not treating ROP?
If the preemie has a severe version of ROP that is left untreated, it eventually leads to retinal detachment and blindess.
So, please, if you know of someone who had a preemie recently, make sure that they are aware of ROP and they get their baby looked at by a ROP specialist. This is especially true in countries like India where not all hospitals make it standard protocol to get preemies checked out for ROP. You could be saving an innocent baby from a lifetime of blindness.
Resource
Sankara Nethralaya Eye Hospital, Chennai, India has excellent ophthalmologists who evaluate, diagnose and treat ROP in dozens of preemies from all over India and from other countries every day. BA was treated at Sankara Nethralaya.
In general, the neonatologist attending to your preemie should be able to direct you to the appropriate specialist for evaluating ROP.
