Hope for Deaf-Blind Triplets — Light in the Dark

Video: Light in the Dark Video: Light in the Dark

There are three small beds in the triplets’ lavender-painted room, but Zoe often sacks out in a beanbag chair. Emma prefers the toy box, if she sleeps at all. Some nights, she spends hours jumping up and down, scattering blankets and playthings as far as she can toss them. Only Sophie, whose remnant of vision allows her to see shapes at close range, remains tucked under her covers most nights. To her sisters, “bed” is a meaningless concept.

The world’s only deaf-blind triplets are seven years old. Tests show they have normal intelligence, but sensory deprivation has severely delayed their development. Though Sophie can navigate familiar spaces on her own, she speaks in three-word sentences and uses sign language at the level of a kindergartner. Emma can sign just four words and say her name, as well as “Mama” and “Dada.” Zoe signs more than a dozen words but says only one: “go.” Like Emma, she is still in diapers.

Until recently, mornings in Liz and George Hooker’s suburban Houston home tended to be utterly chaotic. The girls’ mother and stepfather woke at 5:30. While George straightened the bedroom, Liz bathed and dressed the triplets — a process that would challenge the reflexes of an NBA forward. She had to guess what the girls wanted to eat; when she was wrong, food ended up on the floor. At breakfast, Zoe would sit with her forehead on the table; to stimulate herself, she’d rock, press her thumbs into her eyeballs, and make rasping and buzzing sounds. Emma would swivel her face from side to side, cawing and chirping.

In the midst of it all, big sister Sarah, 11, had trouble getting anyone’s attention. If she needed advice on her math homework or a preteen social dilemma, she had to wait.

The school bus arrived at seven to ferry the triplets to a special-ed program that seemed ill-equipped to help them. “By then,” says Liz, “we were ready to collapse.” Instead she and George did chores, squeezed in freelance work, and stole stray moments for their larger mission: freeing the triplets — and other kids like them — from their suffocating prison.

Over the past year, however, the Hookers have begun to recruit help for their cause. They’ve scored some surprising victories. And the family’s days have begun taking on a very different rhythm.

Of the 45,000 deaf-blind people in the United States, an estimated 11,000 are children. The causes range from genetic disorders to household accidents. The triplets, born on April 30, 2000, when Liz was only 24 weeks pregnant, spent their first months in the hospital. As sometimes happens with extreme preemies, their eyes were damaged by an abnormal growth of blood vessels. Later, to prevent a potentially lethal infection, the girls were given a cocktail of antibiotics. The medication had a devastating though gradual side effect: destruction of the follicles — tiny hairs responsible for hearing and balance — lining their inner ears.

At first, Liz knew only that the triplets were blind, and she put her career as a video producer on hold to care for them. The upheaval sent her troubled first marriage into a tailspin (she and her husband at the time eventually divorced). It wasn’t until the girls were 20 months old that she realized something else was wrong. They’d been learning their first words and taking steps, but they stopped talking and even sitting up. All three furiously banged their heads on the floor. When she received their final diagnosis, Liz lay facedown in the living room and screamed. “I had dreams for them,” she says. “I was going to teach them to dance. It felt like the end of the world.”

Though the triplets’ sense of balance eventually returned, their deafness was permanent. Shortly before their third birthday, Liz had each of them fitted with a cochlear implant — a device that sends a signal to stimulate the auditory nerve. Implants can work wonders for some, but the triplets showed little response. Having been cut off from sensory input so early, they’d lost any ability to make sense of the sound the implants transmitted.

With three profoundly helpless toddlers to care for, Liz could barely attend to her own needs, let alone those of her older daughter. She fell into a deep depression. Then one day in 2003, she stumbled on an ex-boyfriend’s website and decided that revisiting the past might help her find a way forward. Liz and George had dated for two years in college, but his fear of commitment led her to end the relationship. She often wondered how life would have gone if she’d given her old flame another chance.

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