From the Parade Sunday Magazine
issue of June 1, 1997, cover and pages 4 to 6
Part 2 of Can Light be Dangerous for Babies?
by Bernard Gavzer, cover photograph by David Moser
Why are hundreds of very premature babies going blind each year? Experts suspect a hazardous condition in the intensive-care nurseries. Continued from Part 1
Why not fit the goggles on the babies immediately after birth? One reason. Dr. Kupfer said, is that premature babies are very fragile: They are taken immediately into intensive care, where the first priority is simply to keep them alive.
"It would not be ethical to approach the mother for consent until she is physically and psychologically able to provide it," he explained. "The mother is not only under the effect of sedation but also mental exertion, and she is unable immediately to understand what is being proposed."
Both parents, he said, need time to cope with the possibility that their child will die or have serious health complications before they can be approached about the study.
What triggers ROP? Some scientists think the blue-violet waves in fluorescent lights may be a contributing factor. Very low-birthweight babies, whose retinas are underdeveloped, are at highest risk.
Are fluorescent lights really necessary? "Turning down the lights might in some way jeopardize the nurses' and doctors' ability to evaluate the condition of the child, particularly the color," explained Dr. Rand Spencer, one of the study's lead investigators. Dr. Kathleen A. Kennedy, a pediatrics specialist on the study team, also said the lighting was necessary to allow for responsive care for the babies. The lights make it easier for neonatal specialists to detect red-alert signals like signs of seizures, the yellowish color of jaundice or the blue skin color from a lack of blood oxygenation.
Shining light: Katie Watson, 7, at her home in Madison, Wis. Born three months premature, she was blinded by ROP.
"You have all kinds of emotions" said Margaret Watson, Katie's mother. "But what tears at you is that you just don't know how it could happen. You ask yourself, 'Is there something I did wrong?'"
Dr. Reynolds said that all lighting conditions were kept in compliance with existing nursery policies in each hospital. The Data and Safety Monitoring Committee would have stopped the study immediately, he said, if it appeared conclusively that babies in one group showed a higher incidence of the disease.
But the study was not halted early. Does that mean that none of the approximately 200 unprotected babies had signs of ROP? "Your conclusion is certainly a logical one," said John Connett, chairman of the monitoring committee. "I wish I could tell you more, but that would violate the integrity of the study. It's an extremely touchy area for any clinical trial. This is still confidential information."
Aleff and Watson said they were not bitter about the tragedy that bound them. With limited resources but unlimited zeal, they are determined to change conditions in neonatal nurseries everywhere. "It has to be done," said Aleff, "because the intensive-care unit is the most dangerous place in the world for preemies."
"There is nothing I can do to change Katie's blindness," said Margaret Watson. "But there is something we can do to prevent it from happening to other children. Changing the lighting or at least blocking the damaging light waves with filters would help."
Some doctors already agree. But hospital administrators and many scientists are waiting for the outcome of the Light ROP study. "That's why we're doing the study," said Dr. Reynolds. "We should have zero tolerance for premature infant blindness."
Is ROP a Side-Effect of Good Care?
Because we can now keep tinier babies alive, ROP has resurfaced as a major neonatal problem," said Dr. Carl Kupfer of the National Eye Institute (NEI).
Neonatologists have done spectacularly well at keeping premature babies alive. Today, an estimated 85% of all premature babies live a year or more. (Fifteen years ago, about half survived.)
In the intensive-care nurseries, neonatologists attempt to give a baby all the nurturing it would have received in the womb. The infant is placed in an incubator to keep it warm. It gets artificial ventilation because its lungs are not fully formed. It is fed through a stomach tube or vein, and it is given antibiotics and vitamin supplements to prevent infections.
Annually, there are about 3.9 million births in the United States. Of those, about 351,000, or 9%, are premature. Those weighing 2 pounds 12 ounces or less -- about 28,000 a year -- are most vulnerable to ROP.
So far, two treatments are available, though neither is notably reliable. In one, called cryotherapy, doctors freeze the outer edge of the retina to stop the leakage of blood vessels.
In a study by the NEI, this treatment reduced cases of blindness from 61% to 47%. Some doctors have replaced cryotherapy with laser surgery. However, the procedure is considered risky since a side-effect of laser surgery is cataracts.
"Finding treatments is a worthy goal," said H. Peter Aleff. "But I would rather see all that money and energy go into preventing ROP in the first place."
Continue to Mr. Gavzer's follow-up article in Parade Magazine a year later.