European Stars and Stripes (Newspaper) - April 7, 1992, Darmstadt, Hesse                                The Brief life of baby Theresa Pearson created a National debate on the Issue of Organ donation. A dead or alive the ethics of donating organs from Ane Cephalic babies by David Briggs the associated press a baby who lived nine Days without a full brain has forced the nation to grapple with its definition of death and the ethical boundaries of Organ donation. As Theresa Ann Campo Pearson gave up the struggle for life last week in fort Lauderdale fla., ethicist lawyers and judges debated whether society should make an exception for Ane Cephalic infants to rules prohibiting Organ transplants from the living. Ane Cephalic infants rarely live Long and Theresa s parents Laura Campo and Justin Pearson wanted her declared brain dead before she actually died so that her organs would still be usable and her kidneys liver heart lungs or eyes could be Given to other children. But Many ethicist warn that opening the doors to kill the living to save the dying could Lead to abuses that endanger All sorts of people from less severely disabled infants to comatose patients and even the severely retarded. Quot immediately one hits the Slippery slope and Page 14 a the stars and stripes vie parents Laura Campo and Justin Pearson lost their Case in two courts. Starts looking for other kids Wyllo Are almost As bad and that s a real problem Quot said George Annas professor of health Laws at the Boston University schools of Medicine and Public health. Quot it just seems too horrifying Toiusem other people  to other Peoples  Theresa was bom March 21 with most of her Skull missing and Only a brain Stem the part of the body that controls reflexes such As breathing and heartbeat. Her 30-year old parents a construction worker and a waitress quickly made their decision. Quot if my kid can help another baby live then that is what we want to do Quot Campo said. But a county judge said five Days later that because the baby s brain Stem was functioning she could not be declared brain dead and her vital organs could not be taken. Under a 1988 Florida Law death cannot be declared until All brain activity ceases. The state supreme court refused to hear the Case on an emergency basis March 30, but a state appeals court ruled that the matter was of compelling Public interest and sent it Back to the High court for a ruling later. The baby a organs were not transplanted. Doctors said when she was removed from life support that they would be too damaged by the time she died. Also no Matching recipients were immediately found. Her Corneas were donated for research. National Public health policy generally prohibits Organ removal from people who Are not legally dead. One problem Organ donation programs face is dealing with the fear that organs might be taken from a person before death. Quot in our culture. It is unethical to kill in order to save its unethical to kill person a to save person a Quot said Stephen Post a medical immediately one hits the Slippery slope and starts looking for other kids who Are almost As bad. And that a a real problem a George Annas professor of health Law ethicist at Case Western Reserve University in Cleveland but if Ever an exception to brain death could be made Post said it would be in the Case of Ane Cephalic infants. About 1,000 such babies Are born in the United states each year with Only 400 to 500 living More than a few minutes. It is unknown whether they Are Able to experience anything in life even pain. Waiting for death does not always work because the organs deteriorate so rapidly. Quot almost All of us involved in transplantation would like to see babies with Anen Cephal As potential transplant donors Quot said or. Leonard Bailey who directs the infant heart transplant program at Loma Linda University medical Center in Loma Linda Calif. Quot they have no other potential and they have the potential to save other s  ethicist Arthur Caplan of the University of Minnesota said Honor Inythe parents wishes also is important. Quot i think the parents deserve some redemption and transformation of their tragedy Quot he said. Many other Athl cats disagree. Quot what the parents Are really asking for is. Kill this dying baby so that its organs May be used for someone else. Well that s really a horrendous proposition Quot said John j. Paris a bioethics professor at Boston College. Some worry that any exception would Lead to others. They say their fears Are grounded in the experience of the Loma Linda University medical centers Ane Cephalic Organ donor program in 1987. When word got around about the program parents with less severely disabled infants began offering their children s organs. The program was discontinued in 1988. Outbreak in Brownsville Cluster of Ane Cephalic babies has experts perplexed by John m. Mcclintock the Baltimore Sun in less than 36 hours last Spring three babies were born without brains at Valley regional medical Center in Brownsville Texas. Two of the babies were stillborn. The third Hung on for three Days doomed by a gruesome fatal defect that leaves infants with an open Skull and Only the rudiments of a brain. The deaths from the rare defect known As Anen Cephal puzzled Margaret Diaz an occupational health specialist. She thought the three cases could have been a statistical Fluke. Then she had a Chance conversation with a radiologist. He had recently performed ultrasound examinations on seven pregnant women. Each he said was carrying a child without a brain. Doctors soon Learned of at least 10 More cases most of them clustered in Brownsville a City of 98,000 along the Rio Grande. The outbreak there and in surrounding Cameron county May be the largest Ever in the United states. Across the River in Matamoros mexican health officials Are worried too. Two Ane Cephalic children were delivered at the general Hospital in 1990, but 10 were born last year. Diazo a Alan has prompted full blown investigations by the . Centers for disease control three Texas agencies and a local group of lawyers doctors and chemists. So far they have few answers. Quot we think something terrible happened to cause this but we Don t know what it is Quot said William Lipps a Brownsville chemist assisting the cd. But some have their suspicions. Long uneasy about the heavy pollution in their sister City of Matamoros Brownsville residents now fear that an environmental time bomb has gone off. Like other mexican Border towns Matamoros is struggling under the residue left by years of unchecked Industrial growth. It is dominated by .-owned companies that came South Over the last three decades for cheaper labor favourable Trade rules and lax enforcement of environmental Laws. Today Matamoros is an ugly sprawl of Industrial plants and shacks housing mexican workers its open sewers contain toxic wastes and human refuse. Its factories spew fumes and leak chemicals. While cd experts Are considering environmental factors in their investigation of the outbreak they say that the inquiry is in its Early stages and that they have no evidence linking the strange deaths to the chemical Stew in Matamoros. Quot it would be a tremendous medical breakthrough if we could find what caused just half of those Texas cases Quot said or. Gregg Sylvester an epidemiologist who is leading the investigation. Quot i suspect that the causes of Anen Cephal May involve a multitude of factors and that we won t find a single  even As the medical detectives search or answers the tragedy is unfolding. Another Ane Cephalic baby was born at Valley regional on Christmas Day. To the parents of the children the horrible nature of the defects is devastating. Quot Many of the patients were poor mexican american women who had no idea what to expect Quot said Vikki Barton the head nurse in the hospitals Nursery. Quot it is very shocking when you re expecting a Normal  mexican culture stigmatized women who produce deformed children. Doctors know that Anen Cephal occurs in the Early Days of pregnancy As the brain and spine Are formed. But they Don t know what triggers the detect. A British study last year established that folic acid a a Vitamin found in Green Leafy vegetables bread Rice Citrus fruit and nuts a is critical in the first weeks of pregnancy. The study showed that adding folic acid to the diets of High risk mothers sharply reduced their chances of producing Ane Cephalic babies. Researchers have also shown that exposure to solvents a chemicals used to clean or mix in paint plastics and electronics factories a has been linked to Central nervous system defects. A 1979 finnish study tied such defects to a Mother s exposure to solvents. More recently epidemiologists at the Texas department of health found in a 1990 study that men who used solvents faced higher risks of fathering Ane Cephalic children. Preliminary test results show residues of heavy concentrations of organic solvents in the soil around Matamoros and in the Rio Grande. Investigators in the Texas outbreak Are theorizing that exposure to some chemical or other environmental or genetic Factor prevented the Brownsville mothers from having sufficient folic acid in the crucial first weeks of pregnancy said or. James e. Cheek a cd epidemiologist. The scientists Are also trying to discover if there is a predisposition to Anen Cephal among mexican americans since the defect occurs in Mexico at nearly six times the . Rate. Even so other factors May be involved because no Ane Cephalic outbreaks have occurred in similar mexican american Border populations in California new Mexico or Arizona. To Casimiro Vasquez a Brownsville resident who lives just a half mile from Matamoros the questions raised by the medical mystery Are particularly haunting. He is the father of 9-month-old Bianca who suffers from Spina Bifid a nervous system defect closely related to Anen Cephal. She May never walk or control her bladder or bowels doctors say. Quot when she was born with this sack of nerves hanging off her Back we were scared that something evil had befallen us Quot Vasquez said. Quot then we heard from the doctors about these other cases a these babies without brains a and we thought we Are living through a truly great  a amps map tuesday apri 7, 1992 the stars and stripes a Page 15