Learning the truth, then facing it
‘Very lucky, very blessed’
DAYS BEFORE Noelle Simeon was born in November 1982, doctors detected something terribly wrong: Her intestines, ovaries and other organs were floating in the amniotic fluid outside her abdomen.
After her birth, physicians at Cedars-Sinai Medical Center performed six surgeries to place the organs back inside her body and help her heal. At 13 days old, she received a blood transfusion. Her family later learned that she had contracted HIV from it.
Simeon’s doctors predicted that “I probably wouldn’t live till I was 10,” she said. “Then, when I was 10, it was like, ‘She probably won’t live till she’s 16.’ And then when I was 16, they threw their hands up in the air. I consider myself very lucky, very blessed.”
Her parents fought about how to deal with her illness. It contributed to their divorce.
“A lot of marriages do not make it through a sick child,” said her mother, Bettie Ross-Blumer, a musician.
When Simeon was about 11, her parents accepted Cedars-Sinai’s offer to provide care for accidentally infected patients, taking as payment whatever insurers would cover. Her mother sometimes had to remind hospital staff of the arrangement, Simeon says, but it’s now working well.
“I really have no bad feelings about Cedars now,” she said. “They weren’t doing it maliciously. They were trying to save me.”
Now 24, Simeon is a senior at Cal State Northridge, studying to be an English teacher. Her HIV is under control. With seven tattoos, she looks and acts much like her peers. She dates people who are not infected, although she said she tells them that she is.
She has a large group of friends, most of whom don’t dwell on her health condition.
Simeon herself thinks about the virus a lot -- “every time I take my medications.”
But that is not all she thinks about. “I’m pretty much sure that I’ll be able to live a normal life, have a career, have the house, the husband, the kids and live a completely normal life span,” she said.
New name tied to lost life
WHEN Troy Anthony Blocker was born in March 2005, his proud grandma couldn’t bring herself to call him by name.
“I would call him ‘Smush’ or all of those cute baby names, but I never uttered his name out loud,” Shevawn Avila, 48, said. “It was weird calling somebody else Troy Anthony Blocker.”
That had been the name of Avila’s eldest son, who would have been the baby’s uncle. He died in June 1989 when he was 8 years old.
Days after Avila’s son was born prematurely at Cedars-Sinai Medical Center, he had received a blood transfusion tainted with HIV.
In 1987, she heard on the news that Cedars-Sinai was checking for the virus in babies who had received blood transfusions. She called the hospital but didn’t hear back, she said.
Months later, during a visit to Kaiser Permanente to treat Troy’s asthma, Avila asked that her son be tested for HIV.
A few months after his diagnosis, “Cedars eventually called me back,” she said.
Hospital officials didn’t apologize or offer much, she recalled, except to include him in a follow-up study of infected children.
Avila said her son loved drawing, the beach and fast amusement park rides. He liked macaroni and cheese, his great-aunt Naomi’s sweet potato pie and, most of all, his mother’s singing. For Avila, it was hard to believe there was anything seriously wrong with him: “He was stocky and happy.”
But in late 1988, Troy grew weak. He lost weight. “At one point, it looked like he wanted to give up. We were like, ‘You can’t give up.’ ”
Finally, after Troy took a trip to visit his grandparents in Louisiana, Avila told her son that it was OK to die.
“There’s this verse in the Bible, ‘In my Father’s house, there are many mansions.’ I just said, ‘Go look for the house. Go look for your house,’ and then his eyes went off someplace else, and that was when he passed away.”
‘Her world got smaller’
ROBIN AND LARRY JACOBS
AFTER 15-year-old Ariel Jacobs died of AIDS in 1998, her parents couldn’t bear to stay in the house in Northridge where she grew up.
“There were just too many memories,” said her father, Larry.
Still, at their new house in Chatsworth, a pink and purple neon sign bearing her name hangs in the game room. Photos of her and dream catchers she crafted adorn the walls.
Ariel’s 11-year-old dachshund, Shadow, follows her mother around.
Larry and his wife, Robin, are still angry at Cedars-Sinai Medical Center, where Ariel received an HIV-tainted blood transfusion in September 1982. The hospital notified most families in 1987 that possibly infected children should be tested, yet Ariel’s parents said no one called them.
They heard about it from a friend, they said, and had Ariel tested only when a skin condition did not clear up as expected later that year.
“I think the hospital did wrong,” Larry Jacobs said. “I think the hospital did its very best to turn its back on this situation. I think the hospital still has got secrets and skeletons in its closet.”
In her last months of life, Ariel developed shingles in her eyes and pancreatitis.
Cedars-Sinai provided medications and home nursing at no cost to her family beyond what her insurer covered.
Once an avid swimmer and devoted playmate to her little dog, Ariel eventually grew so weak she could hardly move. From her bed, she summoned help by squeezing a Barbie bicycle horn.
“Her world got smaller and smaller,” Larry Jacobs said.
“It got to the point that she couldn’t come down the steps. Then it got to the point she couldn’t go across the hall to the bathroom.”
After she spent the New Year’s holiday in the hospital, it was clear to her parents that Ariel would not survive.
“We took her home to die,” her father said.
Twin’s death shadows sister
SARA ROSE GORFINKEL
WHEN 3-YEAR-OLD Sam Kushnick was diagnosed with AIDS in 1983, his parents were asked not to bring his twin sister to her nursery school class anymore.
“Nobody wanted their kids to play with me,” recalled Sara Rose Kushnick, who now goes by her married name, Gorfinkel.
Sara and Sam had been born prematurely at Cedars-Sinai Medical Center. Both received blood transfusions, but only Sam’s was tainted.
As word got out about Sam and his grim prognosis, parents of other children in the Temple Emanuel preschool class in Beverly Hills became nervous about Sara.
Though perfectly healthy, she never went back.
It was only the beginning of a life shaped by her brother’s illness and death, and by her parents’ grief and anger.
Entertainment managers for comedian Jay Leno and others, Jerrold and Helen Kushnick took their story to the national media, determined to raise awareness about AIDS. “Their whole purpose was always so one less family would have to go through what they went through,” Gorfinkel said.
Now she is all that is left of her immediate family. Six years after her brother’s death in 1983, her father died of cancer. Her mother died, also of cancer, days after Sara turned 16.
She has deliberately let go of her parents’ anger, but her family’s legacy is very much with her. As part of her job at Georgetown University’s Berkley Center for Religion, Peace & World Affairs, she joined a committee dedicated to combating AIDS in Africa.
Wherever she goes, she takes a stuffed dog named Charlie, one of a twin set given by her parents when she and Sam were 2, before their first airplane flight. Sam’s dog was buried with him.
“Charlie, and in some way, Sam, has traveled everywhere with me,” she said. “I don’t think I could get on an airplane without him.”