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Caught in the Middle : As more premature babies are saved, more cases of infant blindness are occurring. Soon, funds to teach them may be cut.

August 08, 1995|SHARI ROAN | TIMES HEALTH WRITER

Advances in neonatal medicine over the past decade have allowed doctors to save growing numbers of very premature infants.

But some of those surviving babies are part of a far less publicized trend: an alarming rise in the numbers of blind children.

Doctors say retinopathy of prematurity (ROP)--a condition in which abnormal blood vessels and scar tissue grow over the retina of a very premature and tiny infant--is the primary cause of the increase.

Besides ROP, very premature babies can become blind because of cortical visual impairment, a condition in which the brain has been damaged and cannot interpret visual information. Cortical visual impairment is often associated with other disabilities, such as cerebral palsy.

"What we see is the success of our medical care system keeping alive people," says Corinne Kirchner, director of programs and policy research for the American Foundation for the Blind. "The question now is: OK, how do we incorporate blind people in this society?"

And just when the increase in infant blindness is being recognized as an unfortunate outcome of advanced neonatal care, lawmakers in Washington have voted to slash funds set aside to educate blind children--including reading materials and teacher training.

Parents of these children and special-education teachers are incredulous that funding for such things as Braille textbooks and teacher training may be cut at a time when the numbers of blind children are increasing.

"We are very alarmed," says Susan LaVenture, executive director of the National Assn. for Parents of the Visually Impaired. "Forty years of building up services for the blind will be diminished by these cuts."

At the Blind Childrens Center in Los Angeles, which has seen its enrollment more than double from 26 students in 1989 to more than 50 today, officials predict that funding cuts will increase the burden on privately funded institutions such as theirs.

"My guess is, we would see more referrals as other centers dry up," says Lynne Webber of the center. "People are very upset because it looks like the cuts will be drastic. It's very shocking."

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Blindness in infancy and childhood is still a relatively rare disability. According to the American Printing House for the Blind, 53,576 American children under age 18 are legally blind. That figure is growing about 3% per year, says Dr. Tuck Tinsley, president of the printing house, a government-funded institution that supplies virtually all educational materials for the blind.

Previous decades have brought about temporary surges in childhood blindness, Tinsley notes--including a swell of premature babies born in the late 1940s and early 1950s who were over-treated with oxygen in incubators. In the '80s, the crack cocaine epidemic led to another wave of blind children.

But, Tinsley says, "Retinopathy of prematurity is the thing today causing the increase. These are children who wouldn't even have survived a few years ago."

Directors of blind children's centers in Phoenix, San Francisco, Boston, Los Angeles and other cities report increased enrollments because of ROP and cortical visual impairment, but there is no official tracking or registry of blind children nationwide, so the increase cannot be officially verified.

"The scientific studies that actually prove the increase haven't been done," says Dennak L. Murphy, executive director of San Francisco's Blind Babies Foundation, which has maintained one of the most accurate and long-running registries of blind children in the nation.

"Blindness is a low-incidence disability," he says, "so no one studies it."

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Retinopathy of prematurity usually occurs in babies born at 26 weeks gestation--more than three months premature--and weighing less than two pounds. About 40% of infants weighing less than two pounds will develop ROP, compared to 5% of babies born at three pounds, according to the American Academy of Ophthalmology.

ROP often clears up by itself. But in some babies laser surgery or cryosurgery is attempted to reverse the abnormal growth. If that is unsuccessful, ROP can lead to detachment of the retina. In these cases, surgery can sometimes restore limited vision, but many children are left legally blind.

Experts estimate that 2% of all very low birth weight babies develop ROP-related blindness or severe vision impairment.

"And since [neonatologists] are saving so many more babies at low birth weights, the total number of blind babies is going up," says Kay Ferrell, a professor of special education at the University of Northern Colorado who is directing one of the largest studies of blind children in the United States.

Louise May Arellano, 4, is one of those miracle babies who was not expected to live when she was born in the Philippines at 27 weeks gestation. But after 31 days in the hospital, her parents took her home.

When Louise was about 5 months old, however, Lourdes Arellano became concerned that her daughter couldn't see.

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