Brian James West was born 19 months ago with the same tragic maladies that led to the controversial death of a Bloomington, Ind., baby last month--the severe mental and physical retardation of Down's syndrome and an esophagus so deformed he could not eat.
But unlike Bloomington's "Baby Doe," Brian's parents were blocked in their effort to let their baby die. So today, after the intervention of a juvenile court and the medical profession, Brian lives, but his is far from a normal life.
He weighs only 16 pounds and cannot walk, talk or eat. He has had two major operations, one heart failure, collapsed veins, stomach acid spills on his skin, regular injections of nutrients and antibiotics in nearly every part of his body, several weeks of being bound hand and foot, and has a tube permanently attached to his stomach so he can be fed.
"Baby Doe's" story is one side of the difficult equation of life and death. Brian's is another.
Susan and John West decided to tell their story this week because they were moved by what they consider to be unfair criticism of "Baby Doe's" anonymous parents.
The Wests' decision to let Brian die "was not based on any thoughts that he was not worth saving," said John West, 37, a physicist who works for a defense contracting research firm here. "It was based on love for Brian and the desire to minimize his suffering. From a Christian point of view, death is not a final happening, and I do not believe death is something to be avoided at all costs . . . . It is my strong feeling that there is a better place for a child like Brian."
The Wests met when they were undergraduates at the University of California at Santa Barbara, and married 13 years ago, waiting until he completed his doctorate before they had children. The birth of their first child, Steven, was "beautiful," said Mrs. West, a former primary school teacher.
When she became pregnant again at age 34, "I knew that I was getting close to the age when amniocentesis a process for detecting birth defects in fetuses is recommended, but there are risks in that procedure itself, and I felt I was getting in under the wire."
At Brian's birth in Hoag Memorial Presbyterian Hospital in Newport Beach, the doctor "went over to the table and stood there just looking at the baby for what seemed like a very long time," Mrs. West said.
Much later, the baby's pediatrician walked into Mrs. West's room, told her husband to sit down, and said, "The baby has a number of problems ranging in degree of severity." He had Down's syndrome and no esophagus--no tube to carry food from his throat to his stomach.
West grew angry as the doctor persisted in referring only to the "baby." "He has a name, you know," Mrs. West remembered her husband saying.
"I remember saying, 'Please, no heroic medicine, let him go,' " she said. They had talked about such a situation hypothetically and they became more resolved to let the baby die as Brian's problems became more apparent. They baptized him when he was three days old, holding him with his various monitoring devices still attached.
As it became clear that the hospital was not going to respect their wishes, they gave way to what Mrs. West calls "panic responses." She remembered telling her husband, " . . . Let's take him out of the hospital, drive to a motel somewhere and not tell anybody, and let nature take its course."
The hospital staff called a hearing of its ethics committee to decide what to do about Brian. The doctors and social workers present determined that his life should be saved. Down's syndrome could not be cured, but surgery, they decided, could replace his missing esophagus.
The Wests were told they could fight the action in court, as the parents of Bloomington's "Baby Doe" did last month in winning court permission for their baby to die.
They decided, however, that they did not want the publicity or the $20,000 legal bill that would come from a court challenge which, they were advised, they could easily lose. They pleaded no contest to a charge of child neglect and surrendered legal responsibility for Brian to the juvenile court.
Once the decision was made, doctors inserted a tube into Brian's stomach so that he could be fed. The tissue around the tube regularly became infected, however.
Saliva and other foreign matter dripped into his windpipe, despite regular suction through a tube stuck into his nose. He caught pneumonia three times and once his heart stopped, but doctors revived him and cut a hole in his neck to allow saliva to drain more easily.
The Wests wrestled with their strange status: were they still Brian's parents? Mrs. West said she turned the problem over to God, and "one of the first messages I received through prayer was that I should go visit Brian on a regular basis."
She was appalled at how thin he was. The doctors had hoped to wait until he weighed 20 pounds before they tried to fashion his new esophagus, but after he reached 15 pounds in December and seemed able to gain little more, they decided to go ahead.
In an operation lasting more than four hours, a pediatric surgeon, Dr. Barbara Towne, formed one partially detached piece of Brian's stomach into a tube and attached it to a second hole in his neck so it could be exposed to the air and heal. Unfortunately, it had no valve to keep stomach acid from pushing up through the makeshift tube and out.
Shortly after the operation, Mrs. West recalled being at the Hy-Lond Home for Exceptional Children, Brian's home for most of his life.
"He was holding a toy, looking at it," she said. "He was placid and then all of a sudden he arched his back and just screamed. You could see stomach acid coming out onto his skin." Nurses had always strapped him into an infant seat when formula was pumped into his stomach so that it would not spill out, but for about six weeks after the first operation they had to keep him bound hand and foot with soft cloth restraints.
In February, Towne completed the process, attaching the new esophagus to the throat and closing the two holes in Brian's neck. But when nurses tried to feed him through the mouth, he coughed and gagged. The new esophagus had too much scar tissue to let anything through. The Wests said they had been told from the beginning that the operation would work; it was an important reason to reject their plea to let Brian die.
At the home 40 miles southeast of Los Angeles, doctors have put Brian on a heavy dose of antibiotics in preparation for another operation to clear the scar tissue from the new esophagus. Towne said she plans to pass a string from his stomach up to his mouth and pull it back and forth with a device attached which can widen the blocked passage so that he will finally be able to chew and swallow.
Towne takes a much more optimistic view of Brian's life than his parents do. "I don't think Brian has a great deal of pain," she said. "Certainly not more than normal children with similar problems." Additional surgery should give him a usable swallowing apparatus, she said, and his life span should not be different from that of other Down's syndrome victims (who generally die younger than normal adults).
Ron Dodgen, regional supervisor for Beverly Enterprises, which runs the Hy-Lond home, declined as "inappropriate" a Washington Post request to visit Brian.
Towne, however, said, "Most of the time Brian is a happy little boy. He responds well to people. The people at the hospital are delighted when I have had to admit him to the hospital, because he is a delightful child."
Brian's parents admit they have not quite worked out how to handle their emotions. With Brian out of immediate danger, the Wests find that they are remaining in close touch with him, although they no longer have legal custody.
They have begun to discuss trying to regain custody, which they have been told would not be difficult. "You love him whether you want to or not," Mrs. West said. "He can't help being the way he is."
The Wests visit Brian, now a three-hour drive away, at least once a month and have snapshots of a smiling baby in a walker, looking normal to an untrained observer except for his small size.
Their older son, Steven, is an active, loving child. He came in from play to give each of his parents a flower durng a recent interview in their three-bedroom home on a scenic hillside here. Steven is large for a 4-year-old, nearly four feet tall and 48 pounds.
Mrs. West has gotten to the point where she can joke about it: "I've got one who is so puny and can't eat and I've got one who can't stop eating."
Yet, she said, she notices how her mood turns sour when she gets a telephone report from Hy-Lond about Brian's recurring infections, rattling coughs and choking spells. They have not shown Steven the pictures of his brother nor let him visit Hy-Lond with them. "He will ask, 'Is the baby still sick?' and I'll say, 'Yes,' " his mother said.
Money never entered into their decision to let Brian die, West said, except to the extent that they decided it was a waste to pay attorneys for what might have been a losing battle in the courts.
Before the juvenile court took custody, their insurance had paid the first $35,000 of Brian's medical bills. West estimates that a total of $100,000 has been spent to date, almost all coming from federal Medicaid funds which would have been available to them also if they had been allowed to retain custody.
West asked, "If the hospital and doctors would not make one nickel from this--from me personally, from insurance, or from the states--would they be doing this? I doubt it." Mrs. West said, "The thing you notice is that these fat-cat doctors and social workers and nurses wash their hands and go home and go to sleep, and they never think of you again. We are the ones who live with their decisions."