Hoisted onto the operating table by a nurse, Aminata Conteh, a spunky 8-year old, crossed her skinny ankles jauntily and held stock-still as doctors numbed her eye and then pierced it with a needle to withdraw a sample of fluid.
Two years ago, Ebola nearly took Aminata’s life. Now, complications from it are threatening her sight.
She came with her mother to an eye hospital here in late July, hoping for surgery to remove a dense cataract that had clouded the lens of her right eye, erasing most of its vision.
Cataracts usually afflict the old, not the young, but doctors have been shocked to find them in Ebola survivors as young as 5. And for reasons that no one understands, some of those children have the toughest, thickest cataracts that eye surgeons have encountered, along with scarring deep inside the eye.
Before the Ebola epidemic in West Africa from 2013 to 2016, doctors did not realise how much damage the disease could leave in its wake, because previous outbreaks were small and survivors few. Eye disease, with the spectre of blindness, has become a dreaded complication.
There are about 17,000 Ebola survivors in West Africa, and researchers estimate that 20 per cent of them have had a severe inflammation inside the eye, uveitis. It can cause blindness, but even if it resolves and sight returns, cataracts can quickly follow. Usually, just one eye is affected.
Are surgeons at risk?
Until recently, surgeons have hesitated to remove cataracts from Ebola survivors, for fear that the insides of their eyes might still harbour the virus.
But physicians from Emory University have made a series of visits to West Africa to study eye problems in survivors, treat them and find ways to prevent blindness if more Ebola outbreaks occur. One goal has been to look for the virus in the eyes of survivors with cataracts, to let local surgeons know whether it is safe to operate.
“Hopefully, more patients will get access to cataract surgery, and practitioners will feel safe,” said Dr Jessica Shantha, an ophthalmologist from Emory.
On a Monday morning, Aminata and her mother joined about 20 other Ebola survivors of all ages at the Kissy/Lowell and Ruth Gess United Methodist Church Eye Hospital, listening as the Emory doctors explained the tests and treatments they would receive. The patients, with their hazy eyes, looked grim and fatigued, old beyond their years.
The team included two more ophthalmologists, Drs Steven Yeh and Brent Hayek, and Dr Ian Crozier, an infectious disease specialist who contracted Ebola while treating patients in Sierra Leone in 2014 and who recently joined the National Institutes of Health.
“I’m also an Ebola survivor in whom my eye went blind,” Crozier told the group. “The same things you go through today, I went through for the past two years, even with the same doctors.”
A translator repeated his message in Krio, the country’s most widely spoken language.
Gesturing to Yeh, Crozier said, “Dr Steve put the needle in my eye. So in a sense we are getting the same care.”
The West African epidemic was the world’s largest, infecting more than 28,600 people and killing more than 11,300 in Guinea, Liberia and Sierra Leone. There are about 4,000 survivors in Sierra Leone. The disease has left deep scars: thousands of orphaned children, worsening poverty for survivors who could not work, families shattered by multiple deaths.
Aminata lost her father and a grandmother, an aunt and several cousins. Other patients at the eye hospital said their immediate families had been wiped out.
Many survivors suffer from “post-Ebola syndrome” — debilitating muscle and joint pain, headaches, fatigue, hearing loss and other lingering ills, sometimes even seizures.
A virus that lurks in the eye
Like the patients he is now trying to help, Crozier was blinded in one eye by uveitis and recovered — but then lost his sight a second time, to a cataract. He had surgery in March.
His eye disease, described on May 7, 2015 in The New England Journal of Medicine, put the world on alert. Nearly two months after he had seemingly recovered from Ebola, and after his blood was free of it, severe uveitis suddenly developed — and Yeh was stunned to find that the fluid inside Crozier’s eye was teeming with active virus. At that time, uveitis was also emerging in West Africa.
Even though the virus may still lurk inside the eye in survivors with uveitis, it is not on the surface or in tears, so patients cannot spread Ebola through casual contact. But operating on them might pose a risk to surgeons who open the eye.
Eventually, the immune system seems to eliminate the virus, but no one knows how long that takes. Eighteen months after the virus was first found inside Crozier’s eye, a repeat test was negative. But when the virus level actually dropped is not known.
Sierra Leone’s Ministry of Health and Sanitation was eager for Emory’s help, according to Dr. Kwame Oneill, who manages its Comprehensive Programme for Ebola Survivors.
“After Ian became ill and had complications, he became a pioneer, a rallying point,” Oneill said. “Ian’s story was the turning point for survivors.”
The eye hospital in Freetown also welcomed the researchers. Dr Lowell Gess, who founded the hospital in 1982, had recognised that uveitis was a severe problem in many patients. In 2015, during the epidemic, Gess, who was 94, began alerting Ebola treatment centres to the condition and recommending medications for it.
How many survivors have eye trouble is not known. Many live in far-flung provinces and have lost touch with health authorities. But a volunteer group, the Sierra Leone Association of Ebola Survivors, has tried to find patients who need help, and has helped pay for travel and lodging so they could consult the doctors from Emory. By this past summer, the Emory team had seen about 50 Ebola survivors with cataracts, from 5-year-olds to people in their 60s.
The team has been “tapping” patients’ eyes, as Yeh did with Crozier — sticking a fine needle into a space called the anterior chamber, and drawing out a few drops of fluid to test for the virus. If the test is negative, it is considered safe to operate.
So far, 50 taps have been performed in Sierra Leone, all negative. The results have made it possible for many patients to have cataracts removed. Eventually, taps may no longer be needed, and patients who have been well for a certain amount of time will be able to just go ahead and have surgery.
“But we’re not there yet,” Crozier said, adding that the team needs to collect more data to be sure.
Going ahead with surgery
The findings have been invaluable to Dr Moges Teshome, an eye surgeon from the Christian Blind Mission who works at the Kissy hospital.
Before the testing, he said, he was afraid to operate on Ebola survivors.
“But the idea of studying the samples before the operation changed my mind,” Teshome said. “My decision would have been different if the laboratory results were positive. If the results were positive, I would not have operated at all.”
To perform taps, Yeh and Shantha wore protective gear as if they were treating Ebola patients: Tyvek suits and hoods with transparent face pieces and blowers to pump in filtered air. Although they did not expect to find live virus, they could not rule out the possibility.
Recognising that the gear might bring back disturbing memories for patients, Crozier told those waiting for taps, “Some people, when they come in and see the suits again, it can make them scared and have the same feelings they had inside the unit, so I just want to remind you that this is just for us to be careful. So remember that behind the mask is Dr Jessica, Dr Steve.”
Aminata seemed unfazed. Sporting a patch after the test, she told Isatu Tholley, an older girl nervously awaiting her turn, that there was nothing to be afraid of, and urged her to be brave.
The fluid samples were sent to a lab to be tested for Ebola, with results due a day later.
In some survivors, Ebola has caused problems even worse than cataracts. One woman, age 35, had inflammation that caused soaring eye pressure, which damaged the optic nerve and caused permanent blindness and constant pain.
“It’s the worst consequence of an eye like mine,” Crozier said. “Not just blind, but painfully blind.”
The patient had decided to have the eye removed.
The operation, by Hayek, took about two hours, with the patient awake but given numbing medication. After removing the eye, Hayek placed an implant in the socket; later, a painted cover would make it look like a real eye.
The team handled the extracted eye carefully. Its extensive damage and inflammation hinted that the virus might still be present inside it, Yeh said. The doctors preserved it for future study: Few if any eyes from Ebola victims have been dissected by researchers.
Despite negative taps, some survivors still could not have cataract surgery, because the pressure inside their eyes was too low, which could actually cause their eyeballs to collapse during cataract surgery. One young woman wept at the news.
“She was very enthusiastic to be operated,” Teshome said. “Then everything would be brilliant. And now it cannot be.”
The doctors told her that surgery might be possible in the future.
Cataracts like cement
Over two days, 18 Ebola survivors were scheduled to have cataract surgery with Teshome.
Aminata was the youngest. Perched on a folding chair outside the operating room, with an orange sticky dot glued above her right eyebrow to mark the side for surgery, she clutched a manila folder containing her records and waited her turn. Hot pink leggings peeked out from under her bright print dress.
Crozier squatted down in front of her, and told her he’d had the same operation she was about to undergo. An anesthesiologist lifted her onto a gurney, where she lay unflinching as he jabbed a long needle into her thigh.
“She’s just tough,” Crozier said as she lost consciousness. He scooped her up from the gurney and carried her, cradled in his arms, to the operating room. Torrential rain pounded on the tin roof.
Cataract surgery requires cutting into the eye to remove the cloudy lens, and inserting an artificial lens. Teshome has done it 20,000 times, and it generally takes him 10 or 15 minutes.
Aminata’s operation took three times that. Scars had fused her lens and iris, and he had to tease them apart. The capsule of tissue around the lens was so calcified that it was like cutting through cement, he said, adding that the scarring likely would have worsened with time, and if they had waited longer to operate, the surgery would only have been more difficult.
The cataract was much denser than those that occur in old people, and only after it was removed could the doctors glimpse Aminata’s retina — the layer of light-sensitive cells at the back of the eye, essential for sight. Yeh and Shantha looked for a “red reflex,” the glow of a normal retina when a light is shined on it. The reflex was absent, which suggested that there might be damage to the retina, or abnormalities in the fluid in front of it. A patch was placed over her eye.
“OK, my girl,” Crozier said, and carried the sleeping child to a recovery area, where her mother waited.
The rest of the operations were a mixed picture — some typical and others difficult, including those on several other young patients. One girl, Jamba, 13, had an extra layer of scar tissue behind her lens that Teshome had never seen before.
The morning after surgery, patients lined up on long benches in the hospital’s huge waiting room, to have their eyes examined and vision tested. Some knew instantly that their sight had been restored. Isatu, the girl Aminata had comforted, was one of those. Her father, still at home but reached by cellphone, wept at the news that she could see again.
Aminata, Jamba and a few others seemed less fortunate. Their vision had not improved: They still could see only hand motion. If Aminata felt disappointed, she did not show it: Lithe and animated, she seemed ready to do pullups on the equipment being used to examine her eye. The exam showed inflammation, and possible scarring on the retina. The doctors prescribed drops and steroid pills to quell the inflammation.
A month later, Teshome performed a laser procedure that markedly improved Aminata’s vision. It’s still not 20/20, but she can see well enough to catch a ball, read with glasses, tell a spoon from a fork. Time will tell whether she improves further.
For Aminata and thousands of others in West Africa, the full toll taken by Ebola still has not been tallied.
–New York Times News Service
