Learning the truth, then facing it
NOELLE SIMEON
‘Very lucky, very blessed’
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.
SARA ROSE GORFINKEL
Twin’s death shadows sister
“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.”
SHEVAWN AVILA
New name tied to lost life
“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.”
ROBIN AND LARRY JACOBS
‘Her world got smaller’
“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.
CANDY PRIDE
Mother and daughter were ‘the sunshine girls’
She called the bereavement office at Cedars-Sinai Medical Center, where Dawn, as an infant, had received the blood transfusion that gave her HIV.
Pride, now 51, remembers asking if the hospital would pay for the funeral. The person on the other end of the line declined, she said.
“I said, ‘You gave her the bad blood that gave her the AIDS that killed her, so why can’t you help me bury her?’ ”
A friend relayed Pride’s concerns to a television reporter. After the reporter called the hospital, Pride said, Cedars-Sinai relented and paid for Hartaway’s casket and burial at Inglewood Park Cemetery.
“I wasn’t going to give her a shabby funeral after what she’d been through,” Pride said. “I wanted her to go out like the angel that she was.”
Cedars-Sinai spokesman Richard Elbaum confirmed that the hospital paid for the funeral but said he could find no evidence that it had ever declined to do so.
Pride still breaks down when she talks about her daughter. The mother and daughter had been known to friends and family as “the sunshine girls” — they coordinated their brightly colored outfits, complete with matching purses and shoes.
“She was my best friend,” Pride said. “After she passed, people were like, ‘It is so strange to see you without Dawn.’ ”
Dawn’s Barbie collection has since become her mother’s; so have some of her stuffed animals.
“I have my days when it just pops up without warning, where I just say her name in my mind and I’m on the floor, on my knees, just crying like she just died,” Pride said. “I don’t know if that feeling is going to ever go away.
“Sometimes I sit and say, ‘Oh God, it’s been so long, why is that pain so fresh?’ ”
“Because that’s the love that’s in my heart that ... no person or anything can ever replace. I’ll never have it again, because that was for her.”
FRANKIE SPALDING
Her sufferings began in middle age
She too was infected at Cedars-Sinai Medical Center. For her too the culprit was a blood transfusion.
But she was not a child. She was in her 40s. And her infection occurred in 1987, two years after the HIV test made it possible to screen blood for the virus, which made the odds of infection by transfusion minute.
Her donor had been infected so recently before giving blood that the antibodies to HIV could not be detected through the test. The donor’s blood also infected a premature baby and a pregnant woman, whose infant got the virus as well.
Spalding sued Cedars-Sinai for negligence, claiming the donor should have been screened out for other reasons. She claimed that the person had checked “yes” on a questionnaire to indicate that he or she suffered from at least one symptom consistent with HIV infection — night sweats, swollen lymph glands, etc. — but that a nurse crossed out the answer and changed it to “no.”
Cedars-Sinai said the donor had checked “yes” in error, an honest mistake.
A jury ruled against Spalding. Separately, Cedars-Sinai paid $150,000 to settle a lawsuit filed on behalf of one of the infants infected by the same donor, court records show.
Now 66, Spalding has had pneumonia and shingles. Her medications have caused a nerve disorder and fatty malformations on her body. She had to stop working as an executive secretary.
At one point, Spalding said, her husband considered leaving her, unsure whether he wanted to stay with someone who had a fatal disease.
Even her friendships have suffered. “You become wary about who you can talk to or how close you get to a person,” said Spalding, who now lives in North Carolina. “You can’t get very close without disclosing that you have HIV or AIDS, and then once people find out, then they become distant anyway.”
KRISTEN LEE
From depression to a sense of purpose
At first she thought they had good news — perhaps, she thought, they were having a baby.
Instead, they told her she had AIDS.
That’s what had almost killed her earlier in the year when she contracted meningitis and pneumonia.
“I was like, ‘Oh, my God,’ ” Lee said. “They said they needed me to understand that going into high school, there would be boys and dances and things like that. They didn’t want me putting anyone else at risk.”
Lee became depressed. She stopped eating and wasted away to 65 pounds. She had to leave high school soon after she started.
“My doctor at the time gave up and told my parents that he could not help me,” Lee said in a 2000 speech at her alma mater, Marymount High School. “My mom refused to give up hope and she found my current doctor — the best doctor ever — who ended up saving my life!”
Lee went back to school and now plans to work in the entertainment industry. For an assignment at the Los Angeles Film School in 2001, she shot a 23-minute movie loosely based on her life, about a young girl with HIV and her search for love.
These days, the 26-year-old doesn’t spend much time feeling sorry for herself or blaming Cedars-Sinai Medical Center, where she received HIV-contaminated blood as an infant. Her disease is under control.
“I think that I obviously have some kind of mission to do here, whether it’s making more people aware of HIV and AIDS or trying to help other people with the virus,” she said.
“I’m here just to give a face to AIDS, I guess, and be a survivor and not ... have a pity party.”
DANIEL BARBAKOW
Dealing with the pain of loss
Daniel Barbakow thinks about his son often, every time his eyes settle on a picture of the boy in his office.
But he tries not to dwell on how and why Aaron died in 1991, a month shy of his 10th birthday.
“You move on,” the 58-year-old lawyer said. “Aaron was a fabulous kid. I miss him terribly.... It’s a disaster in any way, shape or form. But if you live in the past, it’s a terrible problem for everyone involved.”
In March 1981, Aaron and his twin brother, Jordan, were born 11 weeks premature at Cedars-Sinai Medical Center. Both were placed on ventilators and Aaron, at least, received blood transfusions. Six years later, the hospital notified his parents that the blood Aaron received was contaminated with HIV.
For years, when people asked if something was wrong with Aaron — including close relatives — Barbakow’s “universal answer” was that Aaron had leukemia.
“We lied,” said Barbakow — an effort, he said, to spare his son the stigma of AIDS.
Aaron didn’t learn the truth until he had less than a year to live.
After Aaron died, Barbakow said, it felt as though a huge chunk was missing from his being. He did everything he could think of to do: He went to therapy. He read books about loss. He sued Cedars-Sinai for negligence (settling for what he described as “nuisance value”).
“If you called me in ‘97, ‘98, ‘99,” he said, “I don’t think I could have this conversation with you without tearing up or getting a lump in my throat. I don’t have either of those right now. Somewhere down the road, you transition.”
He raised his other son to manhood, and tried to protect him from the pain of losing a twin brother.
Now, when he looks at Aaron’s picture, “it’s not with the thought of ‘Oh, my God, what did we go through?’ or ‘What did he go through?’ It’s just ‘That’s Aaron.’ Unfortunately, it’s very sad.”