KARACHI: Born this year in March, Musa spent several days in a hospital incubator, fighting multiple health complications, before he got reunited with his mother.

Over a month later, he gradually developed an eye illness that doctors described as ROP (Retinopathy of Prematurity), a vision-threatening disease and one of the most common causes of childhood blindness in Pakistan.

“Being a premature baby, Musa was too weak. At the time of discharge from the hospital, the doctor advised that we should get him examined by an eye specialist,” recalled Musa’s father Mushtaq, a resident of Lyari who is associated with milk supply business.

The family reported to an ophthalmologist within a month of Musa’s birth. At that time, the doctor found no signs of the illness. Musa’s follow-up examinations, however, continued for at least a month till he developed disease signs.

Doctors describe ‘Retinopathy of Prematurity’ as one of the most common causes of childhood blindness in country.

“The news was shocking. While we were lucky that the disease was timely detected, it was not easy for us to agree to the treatment,” Mushtaq narrated how the family faced the situation.

In the first phase, the treatment involved injecting both eyes with a medicine that would help reduce growth of abnormal retinal blood vessels. The second step was laser surgery for which the baby was required to be under general anaesthesia.

“I can’t explain what I went through. On the one hand, the very thought of my child going blind was unbearable. And, on the other hand, I feared Musa won’t be able to tolerate the effects [of general anaesthesia],” shared Uzma, the mother of Musa who is the sixth child of the family and second son after 18 years.

The mother, in her 30s, had a difficult postpartum period. In addition, the private hospital in the Garden area where Musa was born did not have an incubator, forcing the couple to get him admitted to another health facility in Pak Colony. His treatment cost the family around Rs270,000.

“Despite this difficult time, we are happy today; Musa has successfully completed his treatment, actively responds to our gestures and has gained weight, Alhamdulilah,” she said, adding that Musa would now continue to have periodic eye examinations for some time.

Lack of awareness

According to experts, while Musa was able to get timely medical intervention, this is not the case for many infants in Pakistan as most parents and even doctors have no knowledge of the disease. One of them is Dr Aziz Memon.

“When I took my daughter to a senior ophthalmologist, she had already experienced 60 per cent retinal detachment,” Dr Memon recalled.

He added that she was born premature and spent almost three weeks in the incubator in 2012. “As a result, she lost one eye. Over the years, she has been treated for different complications, including vitreous haemorrhage, retinal detachment and cataract, affecting her functional eye,” said Dr Memon.

The girl, now 12, has regular follow-up eye examinations. The family says vision challenges have not dampened her joyful spirit as she is an extraordinary student.

Early screening crucial

According to experts, blood vessels in the retina at the back of the eyes normally finish developing a few weeks before birth. An infant who is born early is exposed to many different things; medicine, bright lights, or temperature changes and high levels of oxygen that might affect how an eye’s blood vessels develop.

“ROP happens when abnormal vessels grow in the retina. If not diagnosed by timely screening it leads to untreatable retinal detachments, causing blindness. Babies are at risk, if they’re born before 30 weeks of pregnancy or weigh less than about three pounds at birth,” explained senior ophthalmologist Dr Idrees Adhi, who has been treating ROP cases for the past several years in Karachi and Riyadh where he also chaired ROP Board of the ministry of national guard health affairs.

According to him, while there is no data on ROP in Pakistan, the statistics from developed countries like the United States show that around 600 infants go blind every year. From these alarming figures, he says, one can imagine the severity of the situation in Pakistan.

“We can prevent this blindness by good neonatal care, timely screening programmes and treatment. But, the most important thing is awareness amongst healthcare providers, especially those associated with neonatal care, and paediatricians as well as parents,” he said.

He said ROP might not be visible until several weeks after birth. So, premature babies at risk are usually checked by an ophthalmologist at four weeks after birth and again thereafter.

“Periodic monitoring is crucial. The disease may go on its own. But, if abnormal blood vessels continue to grow, the infant’s eyes must be treated,” he says.

In his opinion, a major risk factor for ROP in Pakistan was improper/unregulated oxygen therapy during neonatal care and lack of ROP screening.

Dr Adhi has operated more than 50 cases of ROP related retinal detachments over the last five years in Karachi, mostly with unfavourable results because of advanced stage of disease at presentation.

“Parents of these children still come to my clinic, looking for any latest treatment that could cure blindness. But, unfortunately, there is none at present,” he said.

About the burden of disease in Lahore, Prof Dr Muhammad Moin, chairman of the Department of Ophthalmology, King Edward Medical University, Mayo Hospital, Lahore, said that there could be 20 to 25 ROP cases in a month at any high burden tertiary care hospital, depending on the size of its neonatal intensive care unit.

“The survival rate of premature babies has increased over the years, which explains the rise in ROP cases,” he added.

The experts emphasised the need for making guidelines for ROP screening and a coordinated effort by gynaecologists, neonatologists/paediatricians and ophthalmologists for its implementation.

Further, training for screening for ROP and its treatment skills must be an essential part of the curriculum for the retina fellowship programme of the College of Physician and Surgeons of Pakistan (CPSP), they said.

Published in Dawn, September 16th, 2024