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.

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.

“I asked the neonatologist how come she doesn’t follow any movement,” Arellano says. Soon, doctors discovered that Louise had severe ROP.

Seeking the best treatment possible, the family moved to Los Angeles, and Louise eventually underwent cataract surgery. But the operation, which has a low success rate, failed to restore her vision. The family decided to stay, however, and to raise Louise in Southern California.

“In the Philippines, they don’t have many services for blind children,” Arellano says. “And only the very rich can afford them.”

When Louise entered the Blind Childrens Center as a toddler, she could do very little other than cling to her parents.

But, says Arellano: “She is now very much different than the baby we brought here. She has learned how to get along with others. They teach these children how to be independent.”

As a testament to that independence, Louise will begin kindergarten in September at a regular public elementary school in Glendale.

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The lack of statistics on blind children is now hampering the efforts of advocates for the blind in Washington.

In a vote last month, the House Appropriations Committee slashed 40% of the funds to the American Printing House for the Blind, which has a 1995 budget of $6.6 million.

If the committee’s budget is seconded by a Senate vote after the August recess, research money would also dry up, and funds for training teachers for the blind would plummet.

There is support in the Senate, however, to turn back the House vote and preserve funds for teacher training and educational resources, says Bob Silverstein, minority staff director for Sen. Tom Harkin (D-Iowa).

“Senator Harkin will do everything he can to make sure that the Senate will not do what the House did,” Silverstein says. “There is no logic in taking money away from such things as teacher training.”

Lawmakers may be underestimating the numbers of blind children because some children--especially many of the very premature--also have other disabilities that they are classified under instead of blindness, says Kathleen Megivern of the Assn. for Education and Rehabilitation of the Blind and Visually Impaired in Washington, D.C.

“If they are multiply impaired, they may not end up [counted] as visually impaired,” she says.

For instance, 68% of children with ROP also have another disability, says Ferrell, the University of Northern Colorado special-education professor.

Advocates for the blind are terrified by potential funding cutbacks. There is already a shortage of teachers for the blind “that is just getting worse,” says Kirchner, of the American Foundation for the Blind.

In one study, Ferrell found that blind students in Colorado received 45 minutes or less per week of instruction in Braille.

A proposed 40% cut in funds to the American Printing House for the Blind would further erode education because neither individual state governments nor for-profit publishers of educational materials could be counted on to make up for cuts in federal resources, says Tinsley, president of the printing house.

Congress began allocating money to the printing house in 1879 because no commercial publisher took an interest in producing educational materials for the blind; the numbers of blind students are too small for such a business to be profitable.

“This area is still of no interest to the for-profit companies,” Tinsley says.

Educators for the blind say they are especially concerned about cuts in early-intervention programs for preschool-age children. Most basic learning takes place by age 5 and is 85% visual, according to the Blind Babies Foundation. Thus, blind children need special services at a very early age.

“For someone who lacks the ability to see or hear, it’s even more critical that intervention be provided at the earliest possible age,” says Kevin Lessard, director of the Perkins School for the Blind in Massachusetts.

One of the most comprehensive studies looking at the development of blind children is under way at several sites around the country, including the Blind Childrens Center in Los Angeles. But funding for the study, directed by Ferrell, would be eliminated under the House’s budget proposal.

Now, more than ever, educators need to understand what they can do to help blind children, she says.

“I was prepared for a cut in funding,” Ferrell says. “What I wasn’t prepared for was to be reduced to zero.”