Pod Corner: 'Blindspot'
SCOTT DETROW, HOST:
When we talk about the epidemic, most people will now immediately think about COVID. But 40 years ago, we were in the middle of another one - AIDS. HIV and AIDS surfaced in the early 1980s and have since killed over 40 million people.
There's a new podcast out from the History Channel and WNYC Studios called Blindspot: The Plague In The Shadows, and it challenges the narrative about those early years and reminds us of the incredible role that health officials play in our public health. Blindspot uncovers stories that most people do not know about the early days of HIV and AIDS, including a pediatric ward in Harlem that turned itself into a place to care for kids with the disease. Here's WNYC host Kai Wright.
KAI WRIGHT, BYLINE: Most people probably don't associate kids with HIV and AIDS, and if they do, they think about Ryan White. He was 13 years old, living in Indiana when he was diagnosed with AIDS in 1984. He got it through a blood transfusion. And when his HIV status became known, he was kept from going to a school. He became the face of children living with AIDS. But in reality, almost all kids who tested HIV positive were born with it. At that time, 80% of the known pediatric cases in New York could be traced to IV drug use, and 90% of these children were Black or Latino. Harlem Hospital was an epicenter. My colleague Lizzy Ratner heard about the early days from Maxine Freyer, who spent 40 years as a nurse at Harlem Hospital.
LIZZY RATNER, BYLINE: Maxine, what year did you start working on AIDS stuff specifically at the hospital?
MAXINE FRERE: The day it started (laughter).
WRIGHT: Here's what it was like at the hospital early on. Doctors and nurses and pediatrics started hearing from colleagues in other departments about a new illness they were seeing, but everyone thought it was just about gay men, including Dr. Margaret Heagarty the woman who headed up the pediatric ward.
MARGARET HEAGARTY: And I think to myself, self, whatever this is, I don't have to worry about it. It's in gay men. And I am not an immunologist. I wouldn't know a T-cell if I tripped over it.
WRIGHT: Steve Nicholas worked for Dr. Heagarty. He wasn't worried either.
STEVE NICHOLAS: I thought, that's got no relevance to kids whatsoever.
WRIGHT: But soon enough, kids were showing up at the hospital with a range of symptoms. The doctors at Harlem may not have worried about the disease to start, but they were forced to confront it head on.
NICHOLAS: Big liver and spleen, big lymph nodes, yeast infection both at the mouth and down into the esophagus. It was like an explosion.
RATNER: And roughly how many kids would you say there were from year to year?
NICHOLAS: Well, you know, it started as one, then it was two, then it was four. Then it was, you know, this sort of progression. I would say that by the end of the first year, we had dozens. And before long, we had, you know, a couple hundred.
RATNER: A couple hundred's a lot.
NICHOLAS: Yeah. That is a lot. Turns out that the highest rate of mother-baby AIDS in the country was in Central Harlem.
RATNER: Back in those days, if a woman was HIV infected, she had a 1 in 3 chance of having a child who was HIV infected.
WRIGHT: Monica de Grado (ph) was another nurse on the ward. She worked with Nurse Maxine and Dr. Steve.
MONICA DE GRADO: So those were huge, I mean, horrible odds.
WRIGHT: This was long before we understood the science behind mother-to-child transmission and long before we could take steps to prevent it. Many of the women were also drug users. And the combination of the drugs and the scary disease, it meant patients were not always treated well, even at Harlem Hospital.
FRERE: Ignorance of HIV, not just in the community but professional people, was crazy.
WRIGHT: On the 17th floor on the pediatric ward, Nurse Maxine says this ignorance meant people kept a certain distance.
FRERE: They didn't like to come into the room. So when they came to our ward, they knock on the door. door.
(SOUNDBITE OF KNOCKING)
FRERE: There's somebody looking for you. They wouldn't come in the room.
WRIGHT: But on other floors of the hospital, it got worse.
FRERE: I remember one particular mother who had a baby down in the fourth floor. So the second (inaudible) was born, and this baby was, like, over there. And the mother was around the corner, around the bend by herself, postpartum. Nobody went to see it until we came down to see it. Where is she? Nobody knew. She was - isolation. She has AIDS. You know, the stigma of being, oh, she's a drug addict. She's a - anything. And so our families were really abused, neglected. I'd say neglected, not abused. But that's abuse, right?
DE GRADO: You know, you have to remember the time. You know, we were in the thick of the crack epidemic.
WRIGHT: Before Nurse Monica worked in pediatrics at Harlem, she worked in foster care. She saw firsthand how drug use and our attitudes towards drug users at the time contributed to what was happening inside the hospital.
DE GRADO: Women would come in to give birth. They would be tested, you know, if there was any suspicion of a substance use. And if that substance abuse test came back positive, those kids were put on a social hold.
FRERE: Social hold, right.
WRIGHT: Especially today, this is a controversial term. Social hold meant kids were prevented from going home with their mothers. These were decisions made often without much thought given to their birth families. Kids were evaluated by a hospital social worker. What support did the kid need? Can the family provide it? And if the hospital was concerned, they'd mark the kid as a social hold and call child welfare to investigate.
DE GRADO: And oftentimes, you know, just with the bureaucracy, these kids were stuck.
(SOUNDBITE OF MUSIC)
WRIGHT: The world outside of the 17th floor of Harlem Hospital was not welcoming to kids with HIV and AIDS, but inside the hospital, on the pediatric unit, Dr. Heagarty made sure her doctors and her nurses took a different approach. In an oral history, she remembered going on rounds.
HEAGARTY: And I quite deliberately would pick one of those infants up and put them in the arms of an intern. And then I would take another one. And we would continue down the hallway making rounds, carrying these children with us. We managed to do away with the fear and loathing of children with AIDS. And this - over a period of weeks to months, I'd find these kids on the knee of the security guard or being carried around by other children and so on. Aw. And so the staff bonded to these children.
(SOUNDBITE OF DOCUMENTARY)
HEAGARTY: We probably in this room have four or five children...
WRIGHT: Here, from a documentary, Dr. Heagarty tours the ward.
(SOUNDBITE OF DOCUMENTARY)
HEAGARTY: ...Who are here not because they're ill enough to require hospitalization but because we have no alternative placement for them.
WRIGHT: And these kids could stay in the hospital for a long time.
(SOUNDBITE OF DOCUMENTARY)
UNIDENTIFIED CHILD: (Crying).
UNIDENTIFIED NURSE: That's called a tempter tantrum.
NICHOLAS: The average length of stay for babies with AIDS at Harlem Hospital was 339 days.
WRIGHT: Some infants were literally growing up in the hospital.
(SOUNDBITE OF DOCUMENTARY)
UNIDENTIFIED PERSON #1: Boarder babies.
UNIDENTIFIED PERSON #2: Boarder babies.
UNIDENTIFIED PERSON #3: Boarder babies.
UNIDENTIFIED PERSON #4: Boarder babies, as we call them.
UNIDENTIFIED PERSON #5: Border babies - boarded and raised from birth until they die within the confines of hospital wards.
NICHOLAS: That got essentially their room and board at the hospital because they had nowhere to go.
RATNER: Well, I want to go back to those wards. Walk me through the ward.
FRERE: So you walk off the elevator, and you make a left turn. And you went into the blue room. There was no identifying mark because we didn't want the kids to be identified. But everybody knew the Blue Room was the HIV room, right?
VICTOR REYES: I got to be a kid when I was there.
WRIGHT: Victor Reyes was born HIV positive at Harlem Hospital in 1989, and during his childhood, he would come back there for treatment and birthdays.
FRERE: Pull up the case. I'm sure.
DE GRADO: Did you bake them?
WRIGHT: Staff brought stuff in from home.
FRERE: Dr. A's father put a blue carpet down.
WRIGHT: They wanted the word to seem normal for kids.
REYES: You didn't have to show ID. You felt really special after a while because you're - security knows me.
FRERE: Bought a wash machine, you know, so you could wash clothes. The staff did this, right?
WRIGHT: Staff wanted their patients to have real lives.
DE GRADO: Given tickets to take the kids to Radio City - right? - the circus.
REYES: They gave us a lot of outlets for sure, went to summer camp every single summer.
DE GRADO: You know, we'd have the camp once a year.
FRERE: And we used to lay out in the sun and the moon and watch the stars.
REYES: There was tiki torches lit up all over the grounds. Their goal is just to put whoever is there on a pedestal and to show them that there's love here, period. And they did a phenomenal job at that.
FRERE: We were a family.
WRIGHT: And as in many families, there are specific stories that people don't want to forget.
FRERE: James was one of our pride and joy.
DETROW: That's Maxine Frere, a nurse who spent more than 40 years at Harlem Hospital. To hear more about James and others, download Blindspot: The Plague In The Shadows wherever you get your podcasts. The new show comes from the History Channel and WNYC Studios. Transcript provided by NPR, Copyright NPR.
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