Retinopathy of Prematurity

Retinopathy of prematurity causes premature babies to needlessly lose their vision. It is the leading cause of childhood blindness.

What is retinopathy of prematurity?

Retinopathy of prematurity (ROP), caused by damage to the retina, can lead to total and irreversible blindness in premature babies. It affects preterm infants whose retinal blood vessels have been unable to develop fully before birth. An affected child may never see light.

Premature babies are often given oxygen in incubators to help them survive, but over-administration of oxygen can be highly toxic to the blood vessels, including those in the retina. Over-exposure to oxygen during the first few hours and days after birth is a major cause of ROP, as is infection. Blindness due to ROP is increasing in middle-income countries, where more premature babies are surviving thanks to improved neonatal care, but where knowledge of ROP and its prevention amongst healthcare workers is sometimes lacking.

What are we doing about it?

The Trust is working with the Government of India, the Public Health Foundation of India and the London School of Hygiene & Tropical Medicine to increase awareness of the condition across India and develop programmes to detect and treat ROP, and so prevent more young children from needlessly going blind.

Our goal is to establish sustainable and scalable services for the detection and treatment of severe retinopathy of prematurity which are integrated into the Government of India’s health system.

Our Progress So Far

By the end of 2015, with the support of our partners, we have…

Research

Funded a nation-wide research project into the existing provisions available for retinopathy of prematurity care, to identify where our work will have most impact.

People

Helped to establish a National Retinopathy of Prematurity Taskforce in India. Led by the Government of India, this taskforce brings together leading experts, who advise on the direction of the programme and help bring about changes to policy and practice.

Knowledge

Supported the development of national guidelines about how to prevent retinopathy of prematurity, which have been endorsed by the Ministry of Health. These guidelines will help inform the training of health care practitioners in neonatal care units.

Through high-level meetings and publications, we are working to increase awareness of retinopathy of prematurity among policy makers and health care workers.

Treatment

Begun establishing retinopathy of prematurity model programmes in eight states across India, which will be embedded into Government health systems.

Provided laser equipment to treat babies in need of treatment for retinopathy of prematurity.

Research

Funded a nation-wide research project into the existing provisions available for retinopathy of prematurity care, to identify where our work will have most impact.

People

Helped to establish a National Retinopathy of Prematurity Taskforce in India. Led by the Government of India, this taskforce brings together leading experts, who advise on the direction of the programme and help bring about changes to policy and practice.

Knowledge

Supported the development of national guidelines about how to prevent retinopathy of prematurity, which have been endorsed by the Ministry of Health. These guidelines will help inform the training of health care practitioners in neonatal care units.

Through high-level meetings and publications, we are working to increase awareness of retinopathy of prematurity among policy makers and health care workers.

Treatment

Begun establishing retinopathy of prematurity model programmes in eight states across India, which will be embedded into Government health systems.

Provided laser equipment to treat babies in need of treatment for retinopathy of prematurity.

Case Study

Dr Subhadra Jalali, India

abdullah_karim.jpg

Dr Subhadra Jalali is a highly qualified ophthalmologist who has worked at L.V.Prasad Eye Institute, Hyderabad, India for many years. She has played a pivotal role in the control of visual loss from retinopathy of prematurity (ROP) not only in India but also elsewhere.

In 1998 she established a programme for detecting and treating sight-threatening retinopathy of prematurity in neonatal care units across Hyderabad and established a tertiary level centre of excellence for treating end-stage ROP, which requires highly complex surgery. There are only a few surgeons in the world with the level of skill required to manage these complex cases, and she has operated on hundreds of infants who are referred to her from across India and beyond. So far over 12,000 premature babies have been treated under her care.

Subhadra is not only an ophthalmologist with exceptional clinical skills, but she is also a committed and enthusiastic trainer – the first person to start a unique, dedicated hands-on ROP course. She has trained over 350 ophthalmologists how to screen for and detect ROP again, from across India and internationally, and also teaches ophthalmologists how to operate on some of the most complex cases where surgery offers the only opportunity for sight.

Case Study

Abdullah Karim, India

Abdullah Karim

Abdullah Karim is 16 years old. He was one of Dr Jalali’s earliest cases in 1998 and has continued to see her since he was only a few weeks old. He was born six weeks prematurely along with his twin, who unfortunately died. He weighed less than 850 grams at birth. When Dr Jalali first saw him at 6 weeks of age, he was already blind in the left eye, and the right eye was severely damaged. His uncle brought him to L.V. Prasad Eye Institute (LVPEI) after reading a newspaper article that Dr. Jalali had written.

Abdullah underwent laser treatment multiple times. The laser worked only partially and so he was sent to Chennai for more complex surgery. He started attending vision rehabilitation services at LVPEI and first wore glasses when he was only 6 months old. He still visits LVPEI at least twice a year for follow up. All the care he has received means that he still has some sight.

What Dr Jalali realised with Abdullah was that earlier treatment, at 4 weeks of age, would almost certainly have preserved more of the normal vision that he was born with. Abdullah’s case highlights that every preterm child should be screened for retinopathy of prematurity within 30 days of birth.

  • Case Study
    Dr Subhadra Jalali, India
    Dr Subhadra jalali

    Dr Subhadra Jalali is a highly qualified ophthalmologist who has worked at L.V.Prasad Eye Institute, Hyderabad, India for many years. She has played a pivotal role in the control of visual loss from retinopathy of prematurity (ROP) not only in India but also elsewhere.

    In 1998 she established a programme for detecting and treating sight-threatening retinopathy of prematurity in neonatal care units across Hyderabad and established a tertiary level centre of excellence for treating end-stage ROP, which requires highly complex surgery. There are only a few surgeons in the world with the level of skill required to manage these complex cases, and she has operated on hundreds of infants who are referred to her from across India and beyond. So far over 12,000 premature babies have been treated under her care.

    Subhadra is not only an ophthalmologist with exceptional clinical skills, but she is also a committed and enthusiastic trainer – the first person to start a unique, dedicated hands-on ROP course. She has trained over 350 ophthalmologists how to screen for and detect ROP again, from across India and internationally, and also teaches ophthalmologists how to operate on some of the most complex cases where surgery offers the only opportunity for sight.

  • Case Study
    Abdullah Karim, India
    Abdullah Karim

    Abdullah Karim is 16 years old. He was one of Dr Jalali’s earliest cases in 1998 and has continued to see her since he was only a few weeks old. He was born six weeks prematurely along with his twin, who unfortunately died. He weighed less than 850 grams at birth. When Dr Jalali first saw him at 6 weeks of age, he was already blind in the left eye, and the right eye was severely damaged. His uncle brought him to L.V. Prasad Eye Institute (LVPEI) after reading a newspaper article that Dr. Jalali had written.

    Abdullah underwent laser treatment multiple times. The laser worked only partially and so he was sent to Chennai for more complex surgery. He started attending vision rehabilitation services at LVPEI and first wore glasses when he was only 6 months old. He still visits LVPEI at least twice a year for follow up. All the care he has received means that he still has some sight.

    What Dr Jalali realised with Abdullah was that earlier treatment, at 4 weeks of age, would almost certainly have preserved more of the normal vision that he was born with. Abdullah’s case highlights that every preterm child should be screened for retinopathy of prematurity within 30 days of birth.