Great Ormond Street Hospital for Children NHS Foundation Trust: Information for Families

Retinopathy of prematurity (ROP)

This information sheet from Great Ormond Street Hospital (GOSH) explains the causes, symptoms and treatment of retinopathy of prematurity and where to get help.

In the womb, the retina (the light Retinopathy of prematurity (ROP) sensitive surface at the back of the affects around 20 per cent of babies that converts images into nerve who are born prematurely. It mainly signals that the brain understands) occurs in babies who are born before develops slowly and the retinal blood week 32 of pregnancy or weigh less vessels often only complete growing than 1500g when they are born. by the end of gestation. If a child is born prematurely these blood vessels can grow abnormally What causes retinopathy causing damage to the retina and of prematurity? of course vision. This is called ROP occurs when a baby is born too early retinopathy of prematurity. to have reached an important milestone in the development of their . It is not passed on from parents to children. muscle To function properly, the retina needs choroid a constant supply of blood to provide sclera oxygen. The blood vessels that supply this blood usually develop between weeks 16 and 36 of pregnancy. If a baby is born early, and the r

etina development of these blood vessels is

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vitreous lens nea incomplete, there will be areas on the humour retina that do not receive enough oxygen. This triggers the production of chemicals to produce new blood vessels. optic nerve These new blood vessels are fragile and can leak blood causing scarring. This pulls the retina out of position, affecting the baby’s ability to see properly.

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Sheet 1 of 3 Ref: 2012F1272 © GOSH NHS Foundation Trust November 2012 The major reasons for babies developing to see inside the eye) to examine the ROP are being born prematurely and of baby’s retinas. They may also use an low birthweight. In the past too much indentor (a tiny rod) to press on the oxygen was found to be harmful to eyeball and get a better look. Sometimes the production of healthy blood vessels a special camera (called a RetCam™) is and this is the reason that oxygen used to take pictures of the retinas. levels in the blood are monitored in all The test can be uncomfortable for the premature babies. baby so the ophthalmologist will try to Premature babies are often given oxygen be as quick as possible. They may also when they are born, particularly if their give the baby a drop of sugar water on a lungs are not yet fully formed. The amount dummy to relieve their discomfort. of oxygen they receive will be monitored The ophthalmologist will be able to see carefully to reduce the risk of abnormal how much of the eye is affected and how blood vessels forming behind the retina severe any damage might be. and affecting the baby’s eyesight. There are five stages of retinopathy of prematurity: What are the signs and „„Stage 0 – No ROP symptoms of retinopathy „„Stage 1 – Avascular zone (where blood of prematurity? vessels are yet to reach) – demarcated There are no outward signs and symptoms by a line dividing the avascular zone but all premature babies born before from normal vascular zone. week 32 of pregnancy or weighing „„Stage 2 – Ridge (thick) divides less than 1.5kg are screened by an avascular zone from vascularised retina ophthalmologist (eye specialist) on a „„Stage 3 – Vascularisation of ridge and weekly or two-weekly basis. vessels growing into cavity of eye „„Stage 4 – Subtotal detachment of How is retinopathy of retina starting from ridge prematurity normally „„Stage 5 – When the retina has become diagnosed? completely detached from the back of the eye ROP is only usually apparent 32 weeks after conception so babies born before „„In addition, the ophthalmologist this stage of pregnancy are given weekly may describe pre-plus or plus disease or two-weekly screenings to check for any where there is vascular congestion and abnormal developments. dilatation. Before the examination, drops will be put in the baby’s eyes to dilate the pupil. They will then use a head-mounted opthalmoscope (a tool that allows them

Sheet 2 of 3 Ref: 2012F1272 © GOSH NHS Foundation Trust November 2012 How is retinopathy of What happens next? prematurity normally Babies who have had severe retinopathy treated? of prematurity will need regular appointments with an ophthalmologist Most babies have mild ROP. If the baby until they are at least five years old. has a mild form of retinopathy, they will Only a very small percentage will not need any treatment as their condition experience impaired (or loss of) vision will resolve itself and the retinopathy will as they grow older, although they may not affect their vision as they grow older. be more at risk of developing other eye However, at its most severe, retinopathy conditions such as a squint or the need of prematurity can cause total blindness. for later in life. There are various procedures that can: „„Help prevent the development of More information retinopathy. For example, destroying the areas of the retina that do not have At GOSH, talk to our Eye Clinic Liaison blood vessels. This removes the need for Officer who can provide practical the body to produce any more blood information, advice and support on all vessels. aspects on visual impairment. You can telephone her on 020 7405 9200 extension „„Help treat the results of retinopathy. 0345, email her at paula.thomas@gosh. For example, re-attaching the retina nhs.uk or visit her at your next clinic after it has been pulled out of position. appointment. „„More recently the use of ANTI-VEGF (a growth factor thought to promote Contact the Royal National Institute ROP) has been advocated but this is of Blind People (RNIB) – the national controversial. organisation for people affected by visual impairment. Visit their website or call In all cases, the complicated nature their helpline on 0303 123 9999. of these procedures means they carry some risk of vision loss and intraocular haemorrhage (bleeding inside the eye).

Notes

Compiled by the Department in collaboration with the Child and Family Information Group

Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London WC1N 3JH

www.gosh.nhs.uk

Sheet 3 of 3 Ref: 2012F1272 © GOSH NHS Foundation Trust November 2012