This article was originally published in Maclean's Magazine on November 30, 1998
Tracey Alvernaz delivered her second son, Matthew, in a Surrey, B.C., hospital at eight minutes past midnight on Jan. 1, 1996. At six pounds, 14 ounces, the infant was on the small side but wailed loudly and appeared to be healthy. Declared Surrey's New Year's baby, Matthew had his picture taken by two newspapers and received gifts from several local businesses. Alvernaz, now 30, and her husband, Vince, 32, were overjoyed, but couldn't help feeling uneasy about one thing: Matthew never opened his eyes. Their doctor attributed the problem to bruising caused during birth, and advised the couple not to worry. Three weeks later, an ultrasound test proved that something was radically wrong: Matthew suffered from a rare disorder that left him with no eyes. He would never be able to see. "It was devastating," says Alvernaz. "I'd never heard of it before."
The medical term for the condition is anopthalmia, and it affects fewer than one in 10,000 children. Yet since 1991, five cases have been reported in British Columbia. And over the past three years, seven children have been born in southern Ontario with one or both eyes missing, an unprecedented cluster of such births, according to medical specialists who have treated the youngsters. They say the condition can be genetic but the prevalence of the Ontario cases suggests that environmental factors - perhaps exposure to industrial or agricultural chemicals while still in the womb - may be the cause. "No way do I see this being genetic," says Michael Webb, a Toronto ocularist - a specialist who makes and fits artificial eyeballs. "The odds against it are astronomical," says Webb, who is working with the Ontario children. "There has to be something within the environment."
Such a connection has been established by a court in Florida. A Miami jury ruled in June, 1996, that John Castillo Jr., now 8, was born without eyes because his mother was exposed to a fungicide called Benlate while she was pregnant. Donna Castillo testified that she was inadvertently sprayed with Benlate in November, 1989, while walking by a fruit-growing operation. Lawyer Ana Rivero, part of Castillo's legal team, said she presented evidence to show the fungicide caused anopthalmia and other eye defects in laboratory rats. The jury in the case awarded Castillo $6 million in damages, although the manufacturer, DuPont, has appealed. Rivero currently represents eight families from England, Scotland and New Zealand in similar suits against DuPont, and a civil trial is to begin next June in a case in West Virginia where the company manufactures ingredients for its fungicides.
Webb said that anopthalmia is such a rare condition that he normally sees about one patient every five years. The seven young children he is currently treating were all born within a 2½-hour drive of Toronto. He has contacted other ocularists across North America but none has reported a similar cluster of patients. As well, some of the children have severe forms of the condition in which no formation of eye tissue had occurred in the womb. Such patients require surgical implants in the empty eye sockets to encourage the facial bones to grow properly. "This group includes some of the most difficult cases I've come across," he said, "which is all the more reason to believe that something other than genetics is involved."
In some of these cases, the parents have spent many hours trying to determine what caused their child's condition. Kristi Lewinsky, a 27-year-old medical records technician who lives in Rodney, Ont., about 50 km west of London, said that a geneticist tested her daughter, born without eyes in April, 1997, and determined that the problem was not hereditary. She and her husband, Roman, 29, visited at least one of several apple orchards near Rodney while she was pregnant. Lewinsky is certain she was exposed to more than one agricultural chemical and has concluded that she did not come in contact with Benlate.
Alvernaz has embarked on a similar search for answers, and has become acquainted with Lewinsky through an Internet chat group comprising parents of children with anopthalmia. Her son is on a waiting list for a genetic test, although doctors have informed her it is highly unlikely that the problem is congenital. In the meantime, Alvernaz has used the Internet to find scientific studies that point to environmental factors, and she, too, believes she may have ingested agricultural chemicals while pregnant. The B.C. woman says that early in the pregnancy she visited her mother in the Okanagan Valley while many apple growers were spraying their trees. "I feel this was a factor," says Alvernaz.
Both mothers say their babies are healthy, although they are developing more slowly than other children due to their disability. Alvernaz said Matthew's speech was delayed, but now that he knows how to talk he rarely stops. He participates in a learn-to-skate program once a week, plays with large Lego blocks and likes to color. He has also discovered that he can remove his $1,200 artificial eyes, and once tossed one across a restaurant. Matthew is, in short, a typically high-spirited three-year-old, but with parents who remain troubled by the unanswered questions surrounding his disability.
Maclean's November 30, 1998