A Mother Tells How a Blood Donation, the Gift of Life, Led to Her Young Son's Death from Aids
updated 06/04/1984 AT 01:00 AM EDT
•originally published 06/04/1984 AT 01:00 AM EDT
For his parents and twin sister Sara, however, the nightmare was far from over. After 10 months of misdiagnosis and mind-numbing medical obtuseness about their child's disease, the Kushnicks now had to face the fear and superstition that plague AIDS victims and their families. Perhaps most infuriating were the obfuscating bureaucrats from the hospital's blood bank and administrative offices who at first would not acknowledge the cause of Sam's death—there are now 54 cases of transfusion-related AIDS on record, 11 of which are children—nor would they help the Kushnicks trace the source of their son's disease. Not only had Sam become a statistic; he had become a statistic that nobody seemed to want to count.
Sam's parents—Jerrold, 53, a lawyer, and Helen, 38, a literary agent, who own a theatrical-management company in Los Angeles—are having none of that, despite their frustration and anguish. In the wake of Sam's death, they have become vocal activists in support of AIDS research. "We would feel like accessories to murder if we didn't," says Helen. Just prior to testifying before a Senate subcommittee about her experience with AIDS, Helen met with assistant editor Bonnie Johnson to talk about the short life of Sam Kushnick.
I was in my seventh month when my water broke and I had to have an emergency cesarean. The day after Sam and Sara were born, the pediatrician told me that, like all premature infants, both babies had respiratory problems because their lungs were not fully developed. He said that though both weighed three pounds, three ounces, Sara was the stronger of the two.
Sara did just fine. She was in intensive care for two days and then she was transferred to the neonatal unit, and I got to breast-feed her. Sam was in and out of intensive care. He needed a respirator to breathe and he developed a bacterial infection when he was about 3 weeks old. Unknown to us, the hospital had begun giving Sam multiple blood transfusions from the day he was born. The blanket release form that Jerry signed when I was admitted allowed them to do this.
I went home after a week but would spend 12 hours a day at the hospital with the babies, feeding them, changing them, trying to get to know them a little. Sam was a roller coaster, up one day, down the next. It elicited a strange set of emotions. I was terrified to get too close to him. I was afraid he was going to die.
Sara came home at the end of six weeks, but Sam stayed in the hospital. He couldn't figure out how to suck and breathe at the same time. He would turn blue, and it took a long time to get him to take even a small amount of milk. A week later we took him home. The hospital advised against it, but I just had to get him out of there.
For the first couple of years we didn't have any problems. The children were basically fine. Sam had a bout of diarrhea when he was 4 months old, but the pediatrician said a lot of babies get it, and it eventually went away. Sam didn't gain weight or grow as rapidly as Sara, but I was told that was all within normal range.
When Sam was about 27 months old, he got his first cold. It never went away. He had a runny nose from 27 months of age until the day he died. The runny nose turned into an ear infection that required an antibiotic from which he developed a rash. Two weeks later the runny nose returned and it developed into another ear infection. He was given a different antibiotic and the chronic diarrhea began. It was a constant cycle.
Sara never caught any of these ailments. She got one cold, and two days later it was gone. It seemed strange to me because I had assumed that whenever one got sick, the other would too. By April 1983 I started questioning why that didn't happen. A pediatrician friend suggested I get head X rays and a blood, stool and urine workup done on Sam. All this time our doctor was telling us that these were common childhood ailments. But he ordered the tests which he told us showed that everything was fine—except Sam was slightly anemic and his gamma-globulin level was high. I later found out that Sam's count was 2,000, whereas 1,200 is the norm for a child his age. The doctor should have considered an abnormality in his immune system.
Five days later Sam got another ear infection, and he ran a fever of 104 degrees. I took him to an ear-nose-throat specialist, who said Sam should be on antibiotics on a regular basis. From June until the beginning of August he got a teaspoon of medicine every day. But he still had the runny nose and the diarrhea. It was Catch-22. I was told he had diarrhea because he was on antibiotics and that he needed antibiotics because of the constant ear infection, but it was all supposed to be within normal boundaries.
In August, when I took the kids for a 3-year checkup, I said, "I want to know why his nose keeps running." The doctor said, "His wife will take care of his runny nose." Sam also had what I thought was a distended stomach, but the doctor said, "It's hereditary. Your husband has a potbelly."
A couple of weeks later Sam came down with a fever again. This time the doctor said it wasn't an ear infection, it was a viral infection and he prescribed Tylenol for the fever. Looking back, I guess this was the beginning of the Pneumocystis carinii pneumonia. It's a protozoan pneumonia. It's rare, but common among AIDS victims.
Sam never really got better. The doctor said it was okay for him to start school in September, but he went for only a week. He just wasn't feeling well. An adult with AIDS would say, "I'm not breathing right." How does a baby of 3 relay that message?
One week after school started, Sam was very lethargic and running a fever again. He developed a cough and his lips got a blue tinge. I called the doctor, who agreed to meet us at the hospital so Sam could get a chest X ray. When they drew blood from Sam, it looked purplish because there was no oxygen in it. That's what Pneumocystis pneumonia does. The lungs can no longer supply enough oxygen to the blood. He was suffocating and was put on oxygen. The next morning we discharged the pediatrician, and the head of pediatric intensive care, Dr. Sima Sconyers, took over. She suspected Pneumocystis pneumonia and asked for our consent to do a lung biopsy.
They put Sam on a respirator and later inserted a catheter through his side into his lungs to monitor his oxygen level. After the biopsy a tube was inserted into his trachea to supply even more oxygen, which made him unable to talk. He didn't cry the whole time he was in the hospital. He just wanted me to rub his foot. But he got very upset when the doctors wouldn't let him use the bathroom. With so many tubes and machines attached to him, he had to use a diaper.
Sam was a brave little kid throughout the entire ordeal. He never complained, even though there wasn't a day after April 1983 when he wasn't on some kind of medication.
The biopsy results came back, and when the doctor said it was Pneumocystis carinii, I thought, "Good, it's bacterial and they can treat it." Then she explained, "When we say Pneumocystis pneumonia, we mean AIDS." Jerry and I thought we weren't hearing right. Wasn't AIDS a homosexual disease? Then the doctor mentioned the blood Sam had gotten when he was born. That was the first time we heard that he had had multiple transfusions, as had Sara. On Friday afternoon they got Sam's blood tests back, and the results were positive. Sam had AIDS, and there was nothing they could do about it. He was going to die.
We spent Saturday crying, but by Sunday Jerry and I decided that if there was any chance at all for Sam, we were going to fight for it. We called everyone we knew who had anything to do with medicine. I went through medical journals reading about AIDS. Dr. Sconyers found out that there had been three other pediatric AIDS cases in Los Angeles that year. Why hadn't we heard about them? I expected a rallying at the hospital and from the county health officials, but instead we were stonewalled. The doctor who ran the blood bank said there was no way Sam could have gotten AIDS from a transfusion and that the only reason he was talking to us was because our son was dying. To this day, to my knowledge, they haven't traced all of Sam's donors. There were 13, and Sara also got blood from two of them. One donation was from a local woman who was fine. The other was Red Cross blood from a Michigan man whom, we were told, the Red Cross refused to contact.
Jerry and I alternated nights in the hospital and at home with Sara. Sam was put into a drug-induced coma to keep him still so he would not have to work so hard to breathe. Jerry and I would still go in and talk to him. We told him about heaven and God and about his two grandparents who were dead and would be waiting for him. I don't know if he heard us.
On the morning of October 13, Sam developed a reaction to one of the drugs. He died at 4:30 that afternoon.
The hospital wanted to put down Pneumocystis pneumonia as the cause of death, but Jerry fought successfully to have AIDS listed. We didn't want the hospital covering up.
We planned to bury Sam the day after he died. I had picked out the clothes he was to wear, and the funeral home came to pick them up. But later, when they saw AIDS was the cause of death, they didn't want to dress Sam. We had to get our rabbi, Jacob Pressman, to call and explain that there was no danger.
While all this was happening, even before Sam died, Sara's nursery school, Temple Emmanuel, decided that she might be contagious. They wanted her withdrawn. Unknown to us, the school scheduled a parents' meeting with people from the L.A. County Health Department, to which Sam's doctors asked to be invited. The school was told that Sara was not contagious and should be allowed back. This was not sufficient. We had immunological tests run showing that Sara was perfect and that Jerry and I were fine. But the day before Sara was to return to class, the school directors told Jerry that Sara would not be allowed back until they knew who the second common blood donor was. Jerry said there was no way we could find that out, and that he was bringing Sara to school. They said if he did, they would lock her in a room with a teacher so she wouldn't contaminate the other children. That was it. We enrolled her in another nursery where everyone has been terrific.
Sara didn't understand what was happening. She knew Sam was in the hospital and would ask if the doctors were taking good care of him and if the nurses were holding his hand. Before he died, we went to a child psychiatrist who worked with us to help explain Sam's impending death to her. We were given this terrific book called Where's Jess?, put out by the Centering Corporation of Omaha. The book explains death to children.
After Sam died I was driving Sara to school, and in a very accusatory tone she asked me, "Did you give Sam his medicine?" I said I did but that there was nothing we could do to help him. There isn't a day that goes by that she doesn't talk about Sam. We talk about the funny things they did together. We had a life before Sam and Sara, but Sara never had a life without Sam.
There is a great deal of disagreement in the medical community about what should be done to test donated blood. I've been told it's not cost-effective to do additional screening. There is no blood test at present that can tell you whether someone is an AIDS carrier, but there are tests available now that can help tighten the screening process. Blood banks do not encourage donating blood specifically for family members, and they should. As it stands now, I can't find out who it is who controls the blood banks, who sets up the guidelines for testing. It's an industry that deals with a product and it should be regulated like one.
At home we're just getting back to something that resembles normal. It's taking a long time. I still find myself saying "the kids"—and then I remember I have one, not two. This whole thing has been very hard on our marriage. We were ready to fall apart but couldn't because we had to be there for Sara. We went to our psychologist, who has helped us deal with our grief. It's been hard professionally, too. I'm not as involved in pursuing our business anymore. Right now we don't know how not to do this, how not to see if we can make Sam's life, as short as it was, mean something. We don't want him to be just another statistic.