When he died last October, it was of a disease not mentioned in the child-rearing manuals on Jerry and Helen Kushnick's bookshelves, a disease that didn't occur to the pediatricians.
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In part, Sammy's story is a medical mystery--about why doctors had difficulty recognizing the disease and about exactly how he contracted it. But it also is the story about the effects of such a disease on the surviving twin, on the parents and on the community.
The public thinks of AIDS as a disease of homosexuals, Haitians and intravenous drug users; medical authorities say it is spreading to the general population. It still is rare among children, one of the few pediatric AIDS specialists in the nation said.
Tainted Blood Suspected
Sammy is thought by county health officials to have gotten in from tainted blood he received as a newborn at Cedar-Sinai Medical Center, blood transfusions that may have saved the sickly infant at the time but that may have given him a disease that took three years to show up.
From a medical point of view, Sammy's illness may have been unavoidable because there is no test that can detect AIDS in blood donors.
Once over the initial grief, the family got angry.
By their account, here's what happened:
· Several pediatricians did not recognize that something was very wrong, dismissing Sammy's fevers, colds, diarrhea and earaches as common childhood maladies.
· When the Kushnicks tried to get assurances that the blood given to Sammy and to Sara as well had been traced and tested, they ran into a brick wall. Citing obligations of confidentiality, they said, the hospital as well as the county Department of Health Services, the Red Cross and the Centers for Disease Control declined to provide them with information.
· The nursery school that the twins attended treated the family "like lepers," the Kushnicks said. They said Sara was kept out for fear she might "contaminated" the other children, despite immunological tests on the family and a letter from the hospital attesting to Sara's excellent health.
"The community just went berserk," Dr. Shirley Fannin associate deputy director of Los Angeles County's communicable diseases control program, said of Sara's treatment at the nursery school.
"The more I think about the way we were stone-walled, first as Sammy lay dying and then afterwards as well, the angrier I get," said Jerry Kushnick, an attorney who runs a theatrical management company in West Hollywood with his wife.
Helen and Jerry Kushnick now 38 and 52 respectively, had been married less than two years when Sammy and Sara were born two months early, a little more than three pounds each. The preemies spent six weeks in neonatal intensive care unit. Sara flourished; Sammy, whose lungs were somewhat immature, developed a serious bacterial infection. Both children received blood transfusions--replacements, actually, of tiny amounts of blood.
Finally, Sammy was allowed to go home and the Kushnick family began the hectic adventure of rearing twins.
For two years they thrived, their parents recalled.
Then Sammy started falling behind Sara in height and weight. He seemed constantly to have a cold, a runny nose, an ear infection, a high fever, a distended stomach, diarrhea, thrush, viral infections, coughs.
Repeated doctor visits provided no answers. One doctor recommended that Sammy's adenoids be removed and tubes inserted in his ears for drainage; another prescribed antibiotics. Another told the parents that Sammy's "(future) wife will take care of the runny nose" and that his swollen stomach was "hereditary."
Don't Think Chile Will Die
His parents wanted to believe that. "You can't believe there is anything else wrong," Kushnick said. His wife added, "And you certainly don't think a child is going to die."
At the parents' insistence, one pediatrician ran laboratory tests and pronounced him fine but for slight anemia. He noted that the immunoglobulin levels (antibodies in the blood) were high, a good sign of a healthy immune system. But an AIDS expert later called by the family told The Times that finding should have sent up a red flag.
"It's like suddenly finding out you have an extra $5,000 in your checking account," said Dr. Arthur Ammann, a pediatric immunologist at the University of California, San Francisco. "You need to ask why it's there." Ammann, who was flown in to see Sammy the night before he died, said high immunoglobulins and low white cell counts are clues that the immune system is beginning to lose control. "The child could have been diagnosed sooner," he said. "It's not that hard to identify; it's just that AIDS is so rare in children you just don't think of it.
Said Jerry Kushnick: "We keep hearing the saying, 'If you hear hoofbeats on the bridge, look for horses, not zebras." Well goddam it, let them start looking for zebras."
On Sept. 25, Sammy was hospitalized; 19 days later he died.
A lung biopsy confirmed that he was suffering from pneumocystis carinii pneumonia, an unusual pneumonia associated with AIDS.
The Kushnicks thought there must be a mistake. How could their son have "a homosexual disease?" Neither parent had ever had a homosexual relationship, they said. Nor had they had contact with Haitians. Nor had they used drugs intravenously. They were unaware that their son had received blood transfusions as a newborn.
The couple remembers asking, "Are we going to lose him?" and the doctor's answer, "Yes." They cried and prayed and begged Sammy to live. One or the other slept at the hospital. They played music for him; they researched the disease, they called experts.
Sammy, they say, took it bravely. He couldn't speak after the lung biopsy, and he was heavily drugged. "But" his mother recalled, "he never cried or seemed scared" despite medical procedures, the unfamiliar surroundings or the sight of his parents in masks and gloves.
"I told him about God and his grandparents and heaven. H just wanted to hold my hand, have his foot rubbed and be covered up.
"'Do you understand that we're trying to help?'" they would ask. "He would nod his head yes."
"The hardest part," Kushnick said as the tears welled up, "was taking the bunk beds apart and explaining to Sara. We had a life before Sammy and Sara; Sara never had a life without Sam.
As Sammy lay dying, word spread among parents at Temple Emanuel in Beverly Hills, where Sara had been attending nursery school for about three weeks, that Sammy had AIDS. The nursery school called a meeting of the parents.
Physicians from Cedar-Sinai and Los Angeles County Department of Health Services gave the parents a crash course on AIDS. They explained that it is not easily transmitted and requires intimate contact such as blood transfusions or sex. Some experts even recommend that AIDS patients continue in play groups or school as long as they feel well enough to do so, so minimal is the risk of contagion.
One parent, Marsha Kline, remembers that when temple leaders assured the group that Sara would be back in school, a handful of parents opposed that decision.
The Kushnick family, meanwhile, underwent immunological testing and was pronounced "perfectly healthy."
Temple Had Second Thoughts
But those at the temple school apparently had second thoughts and asked for a letter attesting to Sara's health. Dr. Carole Hurvitz of Cedars wrote that Sara had been found normal and should be allowed to return to school.
That was not enough. A delegation from the temple school confronted the Kushnicks in the hospital and told them that Sara's readmission would be delayed "until we have further information."
The Kushnicks said they were told that if they sent Sara to school, she would be put in a room by herself with a teacher. Kusnhick said he shouted, "The same God I pray to help Sam is also an angry God and I'll pray he brings his wrath down on you."
The Kushnicks said it was important that Sara's life be disrupted as little as possible.
Instead, Kline said, "They (the temple school) made the child go through blood tests and pain and never let her come back to school. They just removed her things from the cubby she shared with my daughter and put them away."
Temple Emanuel does not see it that way. "We never asked the little girl to leave," said Rabbi Meyer Heller. "When AIDS was discovered in her brother we held a meeting of parents. When it was revealed that both children had received transfusions from the same donors, this frightened many of the parents. We only asked that Kushnicks to hold Sara out until the matter--as to the donors and her vulnerability--was clarified. We needed time to do an education job with out parents."
"It's a sad situation, but the child was beginning to become a pariah. Parents were telling their children not to play with her, and several parents were advised by their pediatricians to pull their children out of school. We were in danger of losing our nursery school. We were in a no-win situation, but we're not the ogre we're been made out to be."
Feared She was Vulnerable
Also, he said the temple school feared that if Sara did have AIDS she could be in danger of catching one of the many viruses going around at the time.
The school's decision, however, led some parents who had never said more than hello to the Kushnicks to seek them out to invite Sara to their homes to play, to try to make up for what had happened. No one yanked his child from the school.
Sara went to doctors who assured her she was healthy. She was seen by a child psychiatrist. The Kushnicks started psychotherapy to deal with their grief and to guard against becoming overprotective of Sara.
Sometimes, Sara mothers her parents. "Are you sad today?" she will ask. "Did you cry?" And "I really miss you Sam."
Still, the Kushnicks panic every time Sara gets a runny nose. Not just because her twin is dead, but because they know Sara received blood from two of the same donors as Sammy.
A spokesman for Cedars said the hospital declines to comment on the case.
"We don't know what we can do about my son," Kushnick said he told the director of the hospitals' blood bank before Sammy dies. "Or even what we can do about our daughter. But don't you feel an obligation and duty to contact parents or pediatricians of other children in the neonatal unit?"
He said the director sad he didn't want "to scare the hell out of the poor parents."
As a newborn, Sammy had received 20 transfusions from 13 donors. Sara received blood replacements too, and when the Kushnicks learned that the hospital did not know which package of blood may have transmitted AIDS to Sammy, they attempted to trace the transfusions.
The Kushnicks could not trace the blood themselves and said the hospital was uncooperative. Shirley Fannin of the county communicable disease control program, told The Times, however, that her department did trace the donors, using information provided by the hospital.
Local Donors, Michigan Man
She said 12 were local, the 13th from Michigan. All have been interviewed; only one, a local man, fell into high-risk category: he is homosexual. He was then and is now healthy and has no symptoms of AIDS; a sample of his blood has been tested and found normal by the Centers for Disease Control. Fannin said Cedars has assured her that none of his blood was used for Sara or for any other child in the neonatal unit, except Sammy.
Blood samples from the local donors are being tested, she said, although such tests do not detect AIDS but rather certain abnormalities associated with it.
Fannin said Sara's common donors with Sammy were a Los Angeles woman and the Michigan man. Both reported good health at the time they gave blood and since then, and they show no symptoms of AIDS.
Only one other child at Cedars had a donor in common with Sammy, Fannin said the hospital reported. When the child's pediatrician was contacted, it was learned that the infant had died at less than one year from complications of prematurely but had shown no sign of immunological defect.
Although Kushnicks were unable to obtain this information from the county, it was given to The Times.
"The Kushnicks' child died, but his death will benefit other children," said Ammann, the San Francisco pediatric AIDS expert. "It will result in changes."
Already, as a result of transfusion-related deaths among young children, hospitals are reexamining blood banking policies. Cedars is considering a program for its pediatric unit, a spokesman said, that would screen potential donor and test their blood. It would be similar to procedures at San Francisco's largest blood bank, where all blood used in newborns and infants at risk is routinely screened for a virus frequently present in normal people but almost always in those with AIDS.
Other hospitals and blood banks are reconsidering the use of "directed" and "autologous" donations in which patients can know and control the source of blood.
Sara now attends nursery school at Temple Beth Am in West Los Angeles, the Kushnicks' regular synagogue. She seems to like it, her parents say, but occasionally still asks why she can't go back to her old school