NURTURE INFORMATION HUB
Health-Related Quality of Life at Age 10 Years in Very Low-Birth-WeightChildren With and Without Threshold Retinopathy of Prematurity
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‘Retinopathy of prematurity (ROP) is a significant and relatively common morbidity of extremely preterm birth…’
Retinopathy of Prematurity (ROP) is an eye disorder that primarily affects premature infants where the risk significantly increases with babies weighing under 1250 grams and/or less that are born before 31 weeks of gestation. The smaller a baby is at birth, the more likely that baby is to develop ROP.
ROP occurs when abnormal blood vessels grow and spread throughout part of the retina starving for oxygen, the tissue that lines the back of the eye. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. Retinal detachment is the main cause of visual impairment and blindness in ROP.
Scientists believe that the periphery of the retina then sends out signals to other areas of the retina for nourishment. As a result, new abnormal vessels begin to grow. These new blood vessels are fragile and weak and can bleed, leading to retinal scarring. When these scars shrink, they pull on the retina, causing it to detach from the back of the eye.
ROP is classified in five stages, ranging from mild (stage I) to severe (stage V):
Infants with ROP are considered to be at higher risk for developing certain eye problems later in life, such as; retinal detachment, myopia (near-sightedness), strabismus (crossed eyes), amblyopia (lazy eye), and glaucoma. In many cases, these eye problems can be treated if caught in time. During the primary school years it is still important to observe for sight problems and attend eye exams.
Symptoms for eye problems at ages 6 – 12 years old are:
It is important to understand the treatment for ROP because it will help you understand the timing of follow-up visits later in life. It remains important for children that are now school ages between 6 years and 12 years continue to have an eye exam on a regular basis.
The treatments that were administered during your child’s NICU stay could have been to just watch, wait and see or the most effective treatments for ROP are laser therapy or the use of injections into the eye to shut down the messages from the retina. Laser therapy “burns away” the periphery of the retina, which has no normal blood vessels. Latest treatment is an injection to the eye, VEGF treatment. Both laser treatment and cryotherapy destroy the peripheral areas of the retina, slowing or reversing the abnormal growth of blood vessels. Unfortunately, the treatments also destroy some side vision. This is done to save the most important part of our sight - the sharp, central vision we need for “straight ahead” activities such as reading, writing, being successful at sport activities and social situations.
So, it is vital to continue with regular eye health checks and vision exams as there is a risk for retinal detachment later in life.
Other treatments are:
Scleral buckle: This involves placing a silicone band around the eye and tightening it. This keeps the vitreous gel from pulling on the scar tissue and allows the retina to flatten back down onto the wall of the eye preformed on stage lV.
Vitrectomy: involves removing the vitreous and replacing it with a saline solution. After the gel inside the eye has been removed, the scar tissue on the retina can be peeled back or cut away, allowing the retina to relax and lay back down against the eye wall. Vitrectomy is performed only at stage V.
Attending follow up eye exams can be a stressful time because it can remind you of the time when this diagnosis was given in the NICU. This a normal reaction and it is important to know that it is completely ok to allow yourself to approach this appointment for your child when you are feeling good and able to be your child’s best advocate. It is also important to find the right person to do these exams in a relaxed fashion who can give you clear information and clear follow-up guidelines and referrals to other healthcare providers that fit your child’s needs. If you feel that your child needs further investigation the health care provider should be listening to your concerns. Writing out questions ahead of time is helpful if you have noticed problems in your child’s vision. Most of all you should feel that your history of the premature birth should be taken seriously and they should help you feel comfortable during this time.
“Every eye exam my mother’s guilt returned. It took me a while to accept it just is! I then also saw this amazing daughter who just took it all in her stride. Her challenges are part of her story and have made her the strong and resilient teenager she is today.” - Kylie, Mum to Scarlet born at 25 weeks.
Questions for health care provider: