Ebola’s Legacy: Children With Cataracts - The New York Times https://www.nytimes.com/2017/10/19/health/ebola-survivors-cataracts.h...

https://nyti.ms/2zl9Qm5

By DENISE GRADY OCT. 19, 2017

FREETOWN, Sierra Leone — 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 realize
how much damage the disease could leave in its wake, because previous outbreaks
were small and survivors few. Eye disease, with the specter of blindness, has become
a dreaded complication.

There are about 17,000 Ebola survivors in West Africa, and researchers estimate that

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20 percent of them have had a type of 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.

Until recently, surgeons have hesitated to remove cataracts from Ebola

survivors, for fear that the insides of their eyes might still harbor 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, Dr. Steven Yeh and Dr. 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,” Dr. 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 Dr. Yeh, Dr. Crozier said: “Dr. Steve put the needle in my eye. So in

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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.

Like the patients he is now trying to help, Dr. 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 Dr. Yeh was stunned to find that the fluid inside Dr. 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 Dr.
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,

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according to Dr. Kwame Oneill, who manages its Comprehensive Program for Ebola
Survivors.

“After Ian became ill and had complications, he became a pioneer, a rallying
point,” Dr. 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 recognized that uveitis was a severe problem
in many patients. In 2015, during the epidemic, Dr. Gess, who was 94, began alerting
Ebola treatment centers 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 Dr. Yeh did with Dr. 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,” Dr. Crozier said, adding that the team needs to collect
more data to be sure.

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.

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“But the idea of studying the samples before the operation changed my mind,”
Dr. 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, Dr. Yeh and Dr. 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.

Recognizing that the gear might bring back disturbing memories for patients,
Dr. 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,” Dr. Crozier said. “Not just blind, but
painfully blind.”

The patient had decided to have the eye removed.

The operation, by Dr. Hayek, took about two hours, with the patient awake but
given numbing medication. After removing the eye, Dr. 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, Dr. Yeh said. The

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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,” Dr. Teshome said. “Then everything
would be brilliant. And now it cannot be.”

The doctors told her that surgery might be possible in the future.

Over two days, 18 Ebola survivors were scheduled to have cataract surgery with
Dr. 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.

Dr. 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,” Dr. 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. Dr. 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

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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. Dr. Yeh and Dr. 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.

“O.K., my girl,” Dr. 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 Dr. 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 pull-ups 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, Dr. 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

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still has not been tallied.

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A version of this article appears in print on October 20, 2017, on Page A1 of the New York edition with the
headline: After Ebola, Children as Young as 5 Are Afflicted With Cataracts.

© 2017 The New York Times Company

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