Brian West died Tuesday without the sort of heroic life-saving measures that kept him alive against his parents' wishes when he was born two years ago.
The child's death, apparently from a massive infection brought on by a series of operations, ended a small chapter in the national debate over what to do with infants born retarded, with severe physical handicaps and short life expectancies.
A still-unidentified Bloomington, Ind., couple earlier this year incited widespread outrage and a Reagan administration warning to federally funded hospitals when they arranged for a hospital to let their newborn baby die.
Like the Bloomington baby, Brian was born with a form of retardation known as Down's syndrome and an esophagus so deformed he could not eat or drink by mouth.
When his parents, John and Susan West, opposed the surgery necessary for him to be fed, a court took custody from them and ordered the operation.
Doctors and county social workers argued it would be inhumane to let Brian starve to death or die from some other intervening medical crisis. Brian's pediatrician, Dr. Martin Rosenfeld, pointed out today, as did other doctors two years ago, that there probably would have been no question of saving the child and attempting, as was done in Brian's case, to reconstruct his esophagus if he also had not been retarded.
The Wests, who say they are moved by a strong Christian belief in an after-life, have argued from the beginning that Brian should have been allowed to die.
Earlier this year they became one of the few such parents to allow themselves to be identified in order to show how much suffering a baby like Brian might have to endure if kept alive.
At his death Tuesday, Brian weighed only 14 pounds and although 2 years old had never learned to walk, talk or eat. He had had two major operations, one heart failure, collapsed veins, repeated respiratory failures, stomach acid spills on his skin, regular antibiotic injections in nearly every part of his body, long hours of being bound hand and foot and had a tube permanently attached to his stomach so he could be fed.
Susan West, who along with her husband regained custody of Brian three weeks ago, said of his death, "He received the best Christmas present of all."
Rosenfeld said today that Brian suffered apparent brain damage and appeared to be blind after his most recent bout of respiratory failure and infection.
He had been taken several weeks ago from his nursing home to the pediatric intensive care unit of Children's Hospital of Orange County, where he died Tuesday.
Rosenfeld said he considers Down's syndrome a mild form of retardation, and agreed with the hospital's decision to try to save Brian after he was born. But when he detected the serious brain damage, he said he told the Wests he would follow normal procedure in such cases and "would not attempt to revive him if he stopped breathing or his heart stopped."
Rosenfeld said the child appeared unusually quiet Tuesday morning before his pulse began to drop and his heart stopped. An autopsy report has yet to be released.
John West, 37, a Santa Barbara physicist, said he had "mixed feelings" about his son's death, but that he was convinced it was the best for Brian. In the future, he said, "I would encourage doctors to listen very carefully to what the parents of such children have to say."