Retinopathy of prematurity

Premature babies that have a low birth weight (less than 1500g) or are born at 32 weeks or less, are most at risk of retinopathy of prematurity. The lower the birth weight, the bigger the risk.

High levels of oxygen necessary to support premature babies can also increase risk of retinopathy of prematurity.

Retinopathy of prematurity is classed into five stages. These range from very mild to very severe. Most babies will have stage 1 or stage 2 and will go on to have normal vision. The more severe stages can lead to severe sight impairment.

• Stage one: Blood vessel growth is mildly abnormal. Babies usually recover without any medical treatment.

• Stage two: Blood vessel growth is moderately abnormal. Babies usually recover without any medical treatment in this stage as well.

• Stage three: Blood vessel growth is severely abnormal. Treatment may be required at this stage.

• Stage four: Partial retinal detachment occurs which means the retina is pulling away from the back of the eye.

• Stage five: Retinal detachment occurs, which means the retina has fully detached from the back of the eye. This leads to permanent loss of vision.

Retinopathy of prematurity is diagnosed by a screening eye examination given to all premature babies at risk of the condition. It is done by an ophthalmologist or other specially trained health professional, using an ophthalmoscope or a camera.

Some babies will not require any treatment as the issue will resolve itself. However, if treatment is required then it is usually treated by laser therapy or freezing treatment (cryotherapy). Both treatments target specific parts of the retina to stop the growth of abnormal blood vessels. Some cases are now treated with injections, which is used alongside laser therapy, to aid in stopping the growth of abnormal blood vessels. 

Early treatment is very successful at preventing severe sight loss in most cases.

In 1953 Fight for Sight founder Norman Ashton discovered the link between retinopathy of prematurity and oxygen given to babies in the incubator. His research led to controlled oxygen delivery and has saved the sight of countless babies.

But there is still lots of work to do to improve treatments for retinopathy of prematurity and to prevent sight loss from developing.

In 2012 Sienna Parsi and her brother, Joshua, were born premature at 28 weeks and 6 days to parents Catherine and Mehdy.

Sienna weighed 2lb and 6oz and Joshua slightly heavier at 3lb and 2oz and they spent 50 days in a special care unit. On the week of discharge, at 39 weeks old, they found out that Sienna’s eyes hadn’t formed correctly and this had left her with a condition, called retinopathy of prematurity.

Catherine said: “Giving the diagnosis that Sienna may never be able to see and that she would be lucky to have navigation vision and light perception was very hard to come to terms with, as Sienna’s mum but also as a family because I think you take your sight for granted.”

Sienna had to have laser eye surgery, at Great Ormond Street Hospital, which was a major operation on someone so small. Unfortunately, the operation proved unsuccessful.

Sienna was referred to John Radcliffe Hospital, in Oxford, where they performed a procedure called, Scleral buckle. This involves sewing a band to the white surface of the eye (sclera). The band pushes the wall of the eye inwards and against the retinal hole, which allows the retina to re-attach.

The bands were left in place for an extended period of time and are currently holding the retina in place. Sienna has to go for check-ups every six months to be monitored.

Catherine added: “We support Fight for Sight because it’s the only UK based charity that funds research into finding a cure for sight loss. Eye research is extremely important because without it we won’t be able to find a cure for sight loss for Sienna and for other people out there.”

You could play an important part in eye research by being a participant in clinical research study that may benefit many people. You could even help shape clinical research by becoming more actively involved and having a say. Patients, carer, or anyone with an interest can help.

What are clinical trials

Clinical trials are research studies that find out if a medical strategy, treatment, or device is safe and effective for humans. They are a key research tool for improving medical knowledge and patient care. The people who carry out research are mostly the same doctors and healthcare professionals who treat people. Their aim is to find better ways of treating patients and keeping people healthy.

Taking part

Here are some ways to find out about research projects and clinical trials that you can get involved in.

UK Clinical Trials Gateway

The UK Clinical Trials Gateway run by the National Institute for Health Research (NIHR) provides easy to understand information about clinical research trials running in the UK, and gives to a large range of information about these trials. It is designed to enable patients and clinicians to locate and contact trials of interest. Visit their website and select the eye condition that you are interested in.

NIHR Clinical Research Network Portfolio

The NIHR Clinical Research Network Portfolio is a database of high-quality clinical research studies in England, Northern Ireland, Scotland and Wales. Within this the Ophthalmology Specialty Group supports a national portfolio of research studies in ophthalmology and the vision sciences. See their website for details.

If you wish to join a trial it is always best to discuss this with your doctor or clinical team first.