Interviewsand Articles

 

A Conversation with Dr. Ann Petru: A Doctor for Life

by Richard Whittaker, Sep 24, 2017


 

 

Ann Petru is my neighbor. I don’t recall when I learned she’s Ann Petru, MD. Even then, all I learned is that she worked at Children’s Hospital in Oakland. The other things I knew were that she put effort into our annual neighborhood party and was the keeper of the neighborhood email list. Oh, and from time to time an offer was sent out for neighbors to drop by and take some hens and chicks she’d thinned out from her front yard.
     I vaguely recall an email a few years ago from Ann soliciting donations for an AIDs walk. But this year I read her note more carefully. This sentence caught my attention:
"We’re down-sizing my staff because we’re running out of money to support the team who works with me - after 31 continuous years."
     This stopped me. Then the idea appeared, why not interview Ann? She must have a compelling story and if more people knew about it this might help her pediatric AIDs program - and at that moment I wondered, why had I been so slow on the uptake?

Richard Whittaker:  Well let’s start wth this. Can you just say what you do at Children’s Hospital?

Dr. Ann Petru:  I'm the Co-Director of Pediatric Infectious Diseases and the Director of the Pediatric HIV AIDS Program at UCSF Benioff Children’s Hospital in Oakland. I've been running the HIV program since the beginning of the epidemic.

RW:   And that goes back how far?

Dr. Petru:   We started the program in 1986, but my first patient was in 1983. She was an important patient in the Bay Area, because she was one of the ones discovered in connection with the suspicion that the blood supply was putting people at risk for HIV.
     A doctor at UC San Francisco, Arthur Ammann, was taking care of a little boy whose birth history was not remarkable, but had received a transfusion. When that boy was about a year-and-a-half old, he was diagnosed with a disease that we weren’t seeing in children at that time. He suspected that the child had what the gay men in San Francisco were having at the time, and it turned out that this child had received a blood transfusion as a newborn.
     Part of Dr. Ammann’s investigation at that time, was to see if anybody else had received blood from the same donor.  He discovered a little girl, who was born around the same time, who received blood from that same donor. He spent a lot of time trying to track her down. Initially, the blood banks weren’t very excited about the idea of the blood supply being contaminated, as you might imagine.     
           
RW:   Sure.

Dr. Petru:   He bent over backwards to get information, and eventually, he found the name of the girl, but she had changed residence from San Francisco to Alameda County. She’d gone from being in a hospital to being in a foster home, where she was eventually adopted, and her name was changed. So it took a while for him to track her down. But she became my patient in the Spring of 1983 when she was admitted with a severe case of chickenpox (varicella) and she had a concurrent bloodstream infection with a bacteria called pneumococcus.  I knew she had something wrong with her immune system, but there weren’t any articles written about children with HIV until 1985, so I was not suspecting an HIV infection when she was admitted to my care.

RW:   So this was your first HIV patient?

Dr. Petru:   This was my patient number one—at a time when there was nothing written about kids having HIV. At that time we didn’t know what HIV was. But there was some reason to investigate, because the other child had a complication that was only being seen in people whose immune systems were destroyed, and that’s what HIV was doing to so many people in San Francisco. At that time, about 1 in 100 blood donors was HIV-infected, but we didn’t know it.     
            
RW:   Oh my gosh.

Dr. Petru:   So I got a phone call from Dr. Ammann in 1983. He was the Director of Pediatric Immunology at UC San Francisco. He just wrote a book (in 2017) called Lethal Decisions, which is a highly critical summary of why things went so poorly, and why so many kids around the world became HIV infected. It was because of decisions that were made at high levels that didn’t allow earlier interventions.
     So my patient was the case that convinced him that the blood supply was a risk.
     When he contacted me, he asked me if I knew about this patient, and I said, “Yes. In fact, she’s in the hospital right now.”
     “What’s she in the hospital for?” he asked.
     She had the worst case of chickenpox I’d ever seen, and concurrently, she had a bloodstream infection with a bacteria for which, at that time, there was no vaccine—and which we were seeing in increasing numbers over the months and years that followed. So she had a combination of a bad viral infection and a bacterial infection, at roughly age two-and-a-half, almost three.
And that led him on his path to work with the blood bank and convince people that we had to do something to prevent people who were infected from donating. But we didn’t have a blood test for HIV yet. We didn’t even have a name for the germ. And by 1986, three years later, there had been a number of women in the Bay Area who became infected, and started delivering babies, who also turned out to be infected.
     At that time, there was nothing known about how to prevent transmission and the infection in the Bay Area was mostly among gay men in San Francisco—very few in women. But on the East Coast, they were about five years ahead of us. The University Medical Dental School in New Jersey in Newark had a program that was taking care of kids, because the East Coast providers were seeing women and babies with these problems before we did.

RW:   I see.

Dr. Petru:   As I started seeing a few kids with HIV, my boss and mentor in Infectious Disease at Children’s Oakland said to me, “I take care of the Department. I run the show. I do this, I do that, I do the other. You figure out what to do for these kids.” So I made a trip to New Jersey to visit the program there, to find out what it was they were doing for the kids. There was no diagnostic test that was easy, and no treatment. But in the world of infectious disease, we were used to making a diagnosis, choosing an antibiotic, and either treating a kid, or knowing that there was no treatment; we would lose battles with some kids. But we didn’t have kids with long-term chronic illnesses in our department. You came in, you had pneumonia, you had meningitis, you had a bone infection. You got treated, you went home. We were done.
     But here was a disease for which there was no treatment. It was clearly an infection, because it was something that was being readily passed from person to person, and yet there was no long-term picture. So in 1986, I made the decision that I needed to figure out how to take care of these kids. So I went to our hospital administration and asked for some help. Initially what I got was a part-time nurse, and then a quarter-time social worker. Eventually that got built up as the number of cases increased. We really started in 1986 with the program, and went from one patient to two, to four, to six, and the numbers kept going up and up. In 1991 I had 59 new patients in one year, which was overwhelming, although not all of them were infected. Many of them were babies born to infected mothers.

RW:   And sometimes the babies weren’t infected?

Dr. Petru:   Right. As the epidemic in adults expanded, there started to be a connectivity among the providers for kids. New Jersey was definitely a big player—and New York, Miami and San Francisco. And we joined with the other groups by the late 1980s, as part of a National Institutes of Health (NIH) Network called the Pediatric AIDS Clinical Trials Group (PACTG). This included roughly 25, then 50 different centers in the country, all of whom had the same set of questions. None of us had large numbers of patients, but we had strength in numbers, as we were seeing more and more. There was no cure, and we knew it was going to continue if we didn’t work together.
     Once there was a drug and it was approved in an adult, what were we going to do for kids? How much did we give? When do we start it? And then here’s a new drug. Do we use the first drug or the new one? Or do we use them together? So step-wise, the treatment for kids around the country gradually changed. Together, we designed studies that offered treatment to kids and those studies in the early years took a long time. We didn’t have a rapid way of measuring how well kids were responding to treatment. The clinical manifestations in children were developmental delay, weight loss and loss of developmental functions. They would get to a certain point, and then they would stop developing and lose what they had. Or they would plateau, where they wouldn’t reach new milestones. Even though they were turning from three, to four, to five, they were stuck at the developmental level of a three-year-old. Or they were just slow. They would gain new milestones, but do it very slowly. So it took a long time to measure a response to treatment until the mid-1990s, when the viral load measurements became available (quantifying how much virus was in the bloodstream).

RW:   So from ’86 until the early 90s, these kids who were infected, how long did they survive, typically?

Dr. Petru:   It varied. We discovered there was a group of patients that got infected very early in-utero. How did we know that? Because there were babies that were aborted and underwent autopsies.  They were found to have virus in their lungs or their thymus or their brains. So we knew sometimes the infection occurred very early. But we also knew that a lot of babies were not infected until the moment of delivery, during the birth process. They get exposed to a lot of mother’s blood, and therefore a lot of virus. Once we started to have medications that could decrease the mother’s virus in her blood, we were able to show that by treating women in the last six weeks of pregnancy, you could reduce the infection rate by two-thirds. That was a monumental study.
     Let me go back a couple of steps to put it in perspective. In the late 1980s, the first drug, zidovudine (AZT) became available. When it became available, the thought was for some critical circumstances, if there’s any drug available, it’s better than nothing—because transmission of this virus was deadly. So the studies done in San Francisco looked at healthcare workers. You had a hospital loading up massive numbers of patients with HIV at San Francisco General Hospital. There were nursing staff, there were phlebotomists, and there were doctors getting poked with needles that had been used to draw blood, or to drain abscesses or various things like that.
     So from the employee health perspective, when AZT became available for the patients, it was immediately looked at for preventing transmission once a healthcare worker was poked with a needle. The problem was it was difficult to monitor whether or not infection was taking place. And once you have a drug like that, and a lethal disease, most people don’t want to be put on a placebo.

[In memory of children infected with AIDs who died]

RW:   Right.

Dr. Petru:   Doing a placebo-controlled study for healthcare workers was very difficult. And concurrently we had mothers and babies and didn’t know whether it was safe to use AZT in babies. So a study was designed in the late 1980s, and took place in the early 1990s that said, “If a woman knows she’s infected and gets into medical care, we will start treatment for her with AZT in the last six weeks of pregnancy, orally. Then when she comes into labor, we’re going to give the same drug through an IV. After the baby is born, we’ll give the baby the same drug by mouth, figuring out the doses, and trying to make sure they’re safe and not harmful.”
     That was a major study in the world of HIV, and the only study ever that showed dramatic reduction in transmission, and it was a placebo-controlled study. That was 1994. By 1996, the standard became “All women who are pregnant should be tested for HIV at least once.” By identifying women in pregnancy, and by giving them just that one drug, AZT (versus a placebo), we were able to show that transmission dropped from 25% down to 8%. And the answer to one common question—how often do women transmit HIV to their babies?—became clear:  for full-term babies without any treatment for the mom, 25% transmitted HIV, 75% didn’t.
 
RW:   That’s interesting.

Dr. Petru:  So that 25% is what we wanted to reduce. With AZT alone, it got down to 8%. Subsequently, with newer drugs and more powerful combinations of drugs, and earlier identification of women infected—and with the dramatic reduction in the amount of virus in their mothers’ bodies—the transmission rate got down to less than 1% in the United States.

RW:   I know from an earlier conversation that you’re friends with Dr. Grace Dammann. How far back does that connection go?

Dr. Petru:   I met her for the first time when her adopted daughter needed care. She wanted to bring her to Oakland. Her daughter was HIV-infected since birth. I became her doctor from the time her daughter was about 12. I followed her through the end of her teen years, and then, when she went to college, she transitioned her medical care elsewhere. But I knew Grace well for those 6 years or so. She came every three months to my clinic. Our paths overlapped in other ways, too, though more at a distance.

RW:   Because she was a doctor, too.

Dr. Petru:   Yes, and she became very involved with the medical team at Laguna Honda Hospital, and was a main provider for HIV care for people there. She was an adult HIV provider at the time she adopted her daughter. I don’t know if you know about her horrible accident and the consequences?

RW:   I do. I interviewed her four years ago and we talked about it.

Dr. Petru:   She recently came to Children’s Hospital in May and gave a talk at Grand Rounds, our main weekly educational session for physicians. The week prior to her presentation we made the film States of Grace available to all the members of the medical staff and the pediatric residents, by an electronic connection. Then she came and spoke from her wheelchair to this audience of physicians, and it was stunning. People were blown away as they realized how important it was for us to hear a physician talk about how healthcare issues changed her life. So really, it was very interesting. I spent a lot of time with her, relatively recently.

RW:   It was really something talking with her over at Green Gulch (SF Zen Center’ organic farm in Marin County).

Dr. Petru:   She’s a very interesting person. And that auto accident for her was huge. In any case, her daughter became one of my many patients over the years.  Earlier in this conversation  we were talking about vertical transmission from mother-to-child. In the mid-1990s, the group of drugs called protease inhibitors became available. Protease inhibitors are a powerful group of drugs that prevent an infected cell from making and releasing more virus to infect other cells in the body. AZT prevents the virus, once it gets into a cell, from becoming a permanent part of the cell’s nucleus. Once a cell becomes infected and the virus’ genetic material is hiding in the nucleus, we don’t know what the triggers are that allow that cell to start producing virus, but once it does, it makes long chains of protein that are part of the virus, and there’s an enzyme (a protein in the cell) that cuts the protein into the right size, and then it packages and releases new virus.
     These protease inhibitors became available around 1996, and at the same time, viral load measurements became available. We can measure how much virus there is in the blood. Once the test became available, the evolution of treatment for kids with HIV progressed very rapidly. We put you on a new drug, and six to eight weeks later, the virus load goes from 100,000 to less than 400 copies in 1 milliliter of blood. And the tests got better and better, able to detect smaller and smaller amounts of virus. It went to less than 200, then less than 150, and now, less than 20 copies in 1 milliliter of blood. That’s like 100 copies in a teaspoon of blood. And you can go from 100,000 down to less than 20, in six or eight weeks.
     What does that tell us? It tells us that most of the virus that’s circulating in the body is recently made, because if we can stop the train, all the virus that’s floating in the body disappears quickly. So the virus doesn’t live long once it’s circulating.

RW:   So, there’s something in the body that, given the chance, sort of eliminates the virus?

Dr. Petru:  Yes. We just stop production, and then there’s none measured in the blood. The disease stops progressing. We had to do a lot of studies to show that the viral load is a reliable measure of the response to treatment. Then in the long run, if your immune system has been badly damaged over time because you’ve been infected for a long time, and now we stop the virus, we were also able to show that the immune system can recover.  
     We measure a type of white blood cell in the body that’s critical to protecting the body from certain infections, including viruses and some fungi, like yeast.  Those are called T-cells, and HIV lives in one specific type of T-cell called CD4.  For a long time, it was thought that once a patient’s T-cells get really low, the patient is going to get into trouble and die from the disease. But the demonstration that stopping the virus will allow the immune system to recover its normal function was incredible. The medications have improved so dramatically and are often combined to package 3-4 drugs into one pill. So now I have kids who are taking one pill just once daily. In comparison, 15 or more years ago we had kids taking 15 to 20 pills 3 or 4 times a day. So it’s a huge change, and clinically these kids are doing well. I don’t have any of my regular patients in the hospital. And I follow about 50 infected kids right now.

RW:  But none of them are in the hospital?

Dr. Petru:  None. It’s been a long time since I've had anyone in the hospital. Most of the kids who come in sick are brought in by desperate parents from other countries. Today, the kids who are adopted internationally have been in orphanages where they’re getting good care, and most of them come in on reasonably good medicine combinations, with a virus that’s low, and an immune system that’s pretty strong. So it’s very different than it was.

RW:  Is Children’s Hospital in Oakland a kind of leading center for treatment for HIV-infected kids?

Dr. Petru:  In Northern California we’re by far the biggest program. Children come to us from as far away as Redding in the north, and Fresno, Tulare County, in the south, as far east as the Sierras. And we have kids who live in 17 different counties. But the majority are still Bay Area kids. Over the years, the program has changed. For a long time, we had many foster parents taking care of kids, and no one knew what to do with them. As the decades have rolled on, those kids have been adopted, they’ve grown up, and now there’s a new generation of younger kids.
     In our program an incredible nurse is working with me, who has herself adopted kids internationally. So she’s very familiar with the process. And we get families now who want to adopt. They’re approached by their adoption agency saying, “We don’t have normal, healthy kids, but there are kids with HIV. Would you consider adopting a kid with HIV?” And they often are given a referral to our clinic. We will talk with and see the parents in advance of an adoption. We’ll explain to them what it means for their family, and what it means for the life of a child, to live with HIV. Now one can safely say that a kid with HIV can have a normal life expectancy, as long as they learn to take their medicines consistently and get a lot of support along the way.

RW:  Really? They have a normal life?

Dr. Petru:  They have a normal life expectancy. That being said, they’re not all normal developmentally. Some of them suffer in other ways. They’re born to women who are infected, and in many parts of the world, especially in Russia and the Ukraine, it’s mostly alcoholism that’s the downfall for their mothers. So a lot of the babies have fetal alcohol syndrome. So they have other reasons to have developmental problems besides HIV. We have other kids who have been living in orphanages their whole life, and some of them have struggled with interpersonal relations.
     There’s a world of problems with attachment, when kids don’t have a primary person they connect with as infants, and where they’ve been bounced from person to person. Or when they live in an orphanage and the staff turns over every eight hours. They never develop the primary bond with somebody, and they don’t learn to trust people well. So they can’t develop the love and the relationships that many people obviously look for when they want to adopt a child. They’re rescuing a child, but those children sometimes come with emotional baggage that’s extremely hard on both the adopted child and the adoptive parents to deal with.
     Currently, we have about 45 HIV-infected kids, 20 of whom are internationally adopted. We have some very interesting stories with them, too.

RW:   Would you just say a little more about what your role is as the director of this department at Children’s Hospital?

Dr. Petru:  I am the main physician for these children who come to clinic. Of the 45 children, I take care of 43 of them. One of my colleagues takes care of the other two.  
           
RW:  So, taking care of them—what does that mean exactly?

Dr. Petru:  Once we’ve finished our initial deep assessment, examined the patients, and had our initial discussion of the disease and provided education to the family, most of the kids come in at 3-month intervals to our clinic. They come in, we find out what’s going on with them. We review all the medications with them. We talk about the challenges that the families face, and those are often related to attachment or school performance. You know, some of the kids have learning disabilities, and for many, English is a new language.  We include interpreters in the clinic to help the parents and the kids communicate and adjust optimally and assess how much the children know and understand. We make sure they get proper evaluation so that they’re getting the services they need in school. We look at potential side effects from the medications, to make sure they’re on the best, safest regimen they can be on. If they’ve been on a complicated regimen, we look for a time when we can gradually transition them to a simpler regimen.
     One of the big challenges is that kids are not just little adults. The problem is that pills don’t come in proper proportions for little kids, and a lot of little kids don’t know how to swallow pills. So we look for powders and liquids in small children. As they get older, we can gradually work on transitioning to pill formulations, when we can teach them to swallow pills.

RW:   So, you’re being the primary doctor for these kids.

Dr. Petru:  Primary HIV doctor. Because they all live in these 17 counties, so they need to have a local pediatrician they can go to for ear infections and colds and primary immunizations—all of the things that a general pediatrician would do.

RW:   How much time do you spend when you see one of these kids?  
      
Dr. Petru:  Generally around an hour, but there’s also a nurse who works with me, and a social worker, and we work as a team. So in anticipation of a clinic visit, we’ll sometimes be in touch with the family to gather information before they come. Then when they come, we find out general info about what’s happened in the last three months. Did they have any antibiotic changes? Did they have any particular challenges? I examine them. We draw blood—we do all the blood draws in our clinic. And the reason we started doing it in our clinic had to do with the research studies we were doing.

RW:   How do you deal with the kids’ anxieties and stuff like that?

Dr. Petru:  Partly, it’s if you do things in a consistent way, they know exactly what to expect. And for some kids, if they’re really anxious about it, we’ll give them a choice. Do you want us to draw the blood first thing or do you want to wait until the end? Do you want to sit on your mom’s or dad’s lap? Do you want to sit on the table by yourself? Do you want me (the doctor) to hold you? You know? If it’s a wiggly-squiggly kid, the nurse will draw the blood, and I'll hold the arm to make sure nobody moves, because we don’t want to have an accident with a needle-stick injury during that process.

RW:  Yeah.

Dr. Petru:  But we started doing it in our clinic because when we’d send the kids to the lab, the lab slip would have ten boxes checked off. And more often than we wanted to accept, the lab techs were forgetting to draw some, or they wouldn’t get enough blood in the tubes or draw the blood into the wrong tubes. And the blood samples for the research studies were critical. We needed to get accurate blood draws. So we just thought, “If we do it ourselves, we know we’re going to get the right samples in the proper tubes.”
     So the nurses became good at drawing blood, and I never let go of my skill at poking kids. So if somebody was a “hard poke,” I’d do it myself. Initially, it was a practical issue of getting what we needed, but also there was always the same person drawing the blood. We got to know the habits of the kids, they knew what to expect, and we got to work it out together.
     In the clinic then, after assessing the patient, we’d come up with a plan. Now, with our electronic medical record, everything we recommend gets typed and printed on a form that the family takes home. It reminds them of all the drugs, doses, and alternatives and subsequent appointments.  
     I mentioned that we were working with the National Institute of Health; we did so for 17 years, from 1989 to 2006. In 2006, the NIH looked at the data available from studies, and at the low transmission rate and said, basically, “We aren’t going to get the answers from all of the programs we have, because the transmission rate from mothers to children has dramatically decreased the number of children with HIV.” So they decided that they weren’t going to continue funding all of the clinical sites, including ours. They were going to limit funding to sites that still had 20 or more new infected kids a year.
     Well, if you do your job well, and you educate your community of obstetric providers, and they test every pregnant woman, and they get infected women on treatment, you are going to reduce HIV transmission. Happily, we did that well, but sadly, it meant that we lost our funding.

[Dr. Petru talking about a former child patient]

RW:  Is that why you sent your note to the neighborhood in the first place, because now you’re faced with raising funds yourself?

Dr. Petru:  Yes. Since 2007, we’ve been looking on our own to get funding to keep our program afloat and support our staff who help me care for these children.

RW:   So what is the situation with AIDS today? I just recently ran across something that said it’s on the rise.

Dr. Petru:  In some communities it’s on the rise. In people of color, especially men who have sex with men, it’s on the rise. In virtually all other populations, it’s diminishing. In Asians, in Caucasians, in women, in children, it’s dramatically decreasing, but African American men who have sex with men, it’s going up.  So the focus should be on education of a different population.   

RW:   Maybe it was in your note that the new infections are in quite a young group?

Dr. Petru:  Yes. And the issue there is they don’t believe they’re at risk. They didn’t live through the time when ACT UP was formed and “AIDS=DEATH” was plastered along newspaper headlines. They didn’t live with the fear. Now they figure, “HIV? Yeah, you can take meds for that.” But if they’re not consistent, it doesn’t work. So there are still people getting infected.

RW:  Now have you adopted any kids?

Dr. Petru:  No. I have two biological children. My story goes back a generation. My mother was a Holocaust survivor. She spent three-and-a-half years in a concentration camp and my father fought for years with the Allies in World War II. My mother’s sister and their mother were also survivors of the concentration camps. Their father, though, was killed by the Nazis, as was my father’s father as well. The two men in our family, my mother’s brother and my father, were part of the Resistance Movement and became part of the Czech unit in the French army—and then the Czech unit in the British army. When the Nazis came into Paris, they retreated to England. So for most of the Second World War, my father and my uncle were stationed in England. And after the war, my father returned to Czechoslovakia. My uncle had been injured, but also eventually returned. Then in 1948, our whole family left Eastern Europe. My mom and dad ended up in England, my grandmother in the U.S., one aunt and uncle in the U.S., another in Scotland, and my great uncles in Canada and Argentina, et cetera.
     We were all quite fortunate and healthy growing up in England, but I had an eye problem as a kid, and had surgery at age 9 after arriving in the US. At a very young age, I decided I wanted to go into medicine. I didn’t know then that, if my mother had not been derailed by the Holocaust, she would have gone into medicine as well. She didn’t tell me that until the day I graduated from UCSF School of Medicine.

RW:  Do you have any reflections on the way things somehow are communicated at a level that’s almost mysterious? 
 
Dr. Petru:  I don’t really know about the mysterious part of it. I just know that my parents gave us the message. In retrospect, it was not that long after the horrible experiences of the Second World War that our family started growing in England. It was just six years after the Holocaust that my brother was born. One year later I arrived and then another brother a year after me. I know most people never get over life horrors and major tragedies. My parents made a conscious decision not to immerse us in the woes of the past, and to try to make a better life for themselves and for us as children. So as we grew up, we got the message that we were loved, that we could do anything we set our hearts to do, and, incidentally, that studying was really important.
     When I was about 10 years old, I told my mom there was a kid at school, who wasn’t there the prior day because of the Jewish holidays. I said, “She doesn’t even look Jewish.”
     My mother said, “What do you mean, ‘look Jewish?’” So I told her what I thought “looked Jewish” was, because there were some kids who outed themselves as being Jewish. And that’s when she told me that we were Jewish.

RW:  You didn’t know?

Dr. Petru:  No. None of us knew. My younger brother, with a piece of chalk on the school playground, drew some squiggly lines that someone thought looked like a swastika. The principal called my mother and made her come to the office to tell her about this. She never told the principal she had lived in terror under Hitler, yet she valiantly defended my brother’s innocent scribbling on the sidewalk.     
     We were loved, defended and fiercely protected by our parents.  Of the three of us, my older brother became a physician and my younger brother became a lawyer. I'm in-between, the peacemaker, the only girl, but never lost my interest in medicine.  After college at UC San Diego, I came to UCSF to go to Medical School, finishing in 1978.  Fortunately, I came to Children’s Hospital Oakland for my pediatric training, then followed specialty training in Infectious Diseases.  I was married and bought this house when I was an intern making $13,000 per year. The house was less than $100,000. Can you imagine? That’s how it was then.

RW:   Actually, I can imagine. I was here in those days, too.

Dr. Petru:  We had two children.  My daughter was very interested in what I did, in work, though my son was not. My daughter ended up going to medical school and just recently, she graduated from family medicine training in Seattle. She’s now a fully-fledged family medicine doctor, and is about to have her second child. So she’s followed my footsteps. My son is an athletic director at a high school in San Francisco. He works with young people, and helps them find a healthier path, because a lot of them are really troubled kids.

RW:  Do you have any stories that particularly stand out in the years of your work at the hospital?

Dr. Petru:  I have so many. There are many people who end up adopting internationally, and some of them start here. They just apply and then go where there’s a child in need of a loving family.  And there are others doing work abroad for other reasons. There’s a couple, who now live in California, where he’s an attorney working for an American company that had offices in Hong Kong. The family spent two or three years in China and would come back here for a while. Then they would go back there again, and they would come back. The mother did some volunteer work in an orphanage, and asked about one of the children there. She’d already adopted one child and was thinking of another one. They already had four biological children who had grown up.
     Their first Chinese adopted child had several medical problems, but intellectually, she had no problems; she was functioning fine in the family. But when she asked about this other child in the orphanage, she was told that she was “unadoptable.” And she asked, “What do you mean by ‘unadoptable’?”
     They said, “Well, she has HIV.”
     And this woman said, “That doesn’t mean we can’t adopt her.” So she and her husband fought to the upper levels of the Chinese government to convince them that there’s nothing wrong with a child from China being adopted to the U.S. simply because the child has HIV. Eventually they succeeded and brought her here 12 years ago.
     Subsequently, the woman who ran the orphanage was so touched by the fact that this family really wanted to adopt a child, despite the HIV, that she then worked in the Chinese system and set-up an orphanage that was run by, and for, women with HIV for children with HIV. It was a group of two or three homes with resident caretakers, who were HIV-infected adults who were not afraid of dealing with these kids.
     But there’s still a stigma in China about HIV, as there is here. Sometimes the word would get out in the community that a particular home had kids with HIV and they would have to quickly move away, because the kids would be tortured and bullied in that same neighborhood.
     So, our patient was that first child from China to be adopted with HIV. We now have six or seven kids in our program adopted from China, because that one family made the effort to open the door. And the kids are doing great here once they get plugged into care and their meds are adjusted. Their disease gets under control. There are issues, as I said, related to attachment disorders with some of the kids, but most of them are just doing beautifully.

RW:  So, the adoptive parents were not Chinese?

Dr. Petru:  In most of those families, that’s correct. One couple has a Chinese-American father and a Caucasian mother, both of whom have HIV, and they adopted 2 Chinese children with HIV.

RW:  That’s quite a story, how one couple’s efforts had such an impact.

Dr. Petru:  We make an effort to bring those kids together through our clinic.  The children lived together in the same orphanage in China. We’ll bring one Northern California family in at eleven o’clock in the morning, and we’ll see their two kids between 11:00 and 12:30. Then we’ll bring the second family in at 1:30. They overlap at lunch, so they can go and have lunch together away from the hospital.  They love combining a social visit for the children with their medical appointments, since it saves them driving for hours to meet in their homes, which are in opposite directions from the hospital.

RW:  Nice. What’s the most rewarding part of your work?

Dr. Petru:  There’s just something very deep and meaningful about helping families through difficult times, and accepting people for who they are and for the challenges they face. I've met some incredible people, and someday, I'll write a book about some of those people.

RW:  Give me an example.

Dr. Petru:  You ask people what motivated them to adopt children or to become foster parents. Some people just love kids. They love holding and hugging, and they’ll become foster parents. They take care of the kids for three months or six months or a year, and then the kids go off to some adoptive home, or back to their biological families.
     One of the families I dealt with, had an adopted child die of HIV, and when the child died, the mother decompensated. I didn’t understand why, to the degree, she did.  We’d been preparing her—the child was going to die. There wasn’t a whole lot we could offer him. But she decompensated in a way I never expected.
     It turned out that this woman had a teen pregnancy and gave her child up for adoption. She wanted to go to college and really wasn’t prepared to be a mother at that age. But her child, given up for adoption, died just two weeks later of sudden infant death, in a foster home. She felt that if she’d taken care of that child, it never would have happened. So, she spent the next 20 years and took about 120 children into her care, proving she could be a good mom. So when my patient died, it was the first time a kid in her care had ever died.
     I never knew this story about her biological child who died of sudden infant death. So for 20 years and for those 120 kids, she took care of them beautifully and with compassion and commitment.  She adopted the ones who had special needs, ones that no one else wanted. She was an incredible foster mom and adoptive mom to those kids. Yet, when we lost the battle with this one child, her commitment to new foster children came to an end. There was no need for her to foster kids anymore. She had proven for those 20 years, that she could take care of lots and lots of kids, and do really well for them.

RW:  When you said she decompensated, did she ever get back on her feet? 

Dr. Petru:  Yeah, she did, but she didn’t become a foster parent again.

RW:  Do you think that passing through all of that was healing for her?

Dr. Petru:  I think she was able to recover in a lot of ways, and it was incredibly meaningful to her while it was happening. She adored those kids, and she could do for them what nobody else seemed able to do. Kids who were labeled as being extremely difficult, and she would manage to bring them around, and they would thrive, they would do beautifully.

RW:  That’s amazing. I think it shows that someone with the right amount of love and perception and attention, can do things that other people might think weren’t possible.

Dr. Petru:  Right. But then there are those kids that even she couldn’t fix - and I couldn’t fix. One of the reasons I went into medicine was to help people, to change things, to make it better. 
     The three most important things I wanted to do in my career were clinical work, research, and teaching—and the HIV epidemic gave me all of those. The clinical work was obvious. The research was through all the studies we did to get better, faster answers, so that kids could do better. And the teaching is what I do every day—for the kids, the parents, the residents, the fellows and the other attending physicians. As awful as it was to have the HIV epidemic fall into my lap, it was an opportunity that I just needed to take on. Nobody else wanted to do it, and I was in the right place at the right time.  It’s been very rewarding in a lot of ways. I wouldn’t give it up, and I can’t imagine not taking care of these kids. It doesn’t mean it’s always easy, because sometimes, we run across parents who are particularly challenging.

RW:  Do you want to give an example of that?

Dr. Petru:  There are some families that don’t accept what we say, and don’t understand, or don’t recognize, the problems we address.

RW:   Like what might they not accept, for instance?

Dr. Petru:  When parents don’t get along, or get divorced, they often can’t come to an agreement for the benefit of the child to do things in a consistent way or to put the child’s needs at the top of their lists. Or where, very clearly, a child has a lot of mental health issues and a mother undermines every attempt to get the kid into therapy. So the kid doesn’t get the sense that we’re working on this together. Sometimes a mother is not telling us the truth about things, like saying a child hasn’t missed any doses, when the last 30-day refill of medications was seven months ago. Where’s the medicine coming from?
     So in order to make all of this work, I need some nurses. I need a social worker. Back when we had the largest number of infected patients in the late 1990s, I had four nurses and three social workers. Now I'm down to fewer than two nurses and one social worker. The need for staff has gone down to some degree, too. I have fewer infected kids. But we still see the babies born to infected moms, and those kids need to be seen at least three times in the first four to five months of life so that we can give them preventive medications and eventually prove that they’re not infected. Then we can say, “You’ve graduated. You’re done. You don’t need to be tested further. Have a good life.”
     We also see kids who have been sexually assaulted and kids who have been exposed to HIV, potentially, through needle-sticks in the community. Recently we had a child who went to the park at Crown Beach in Alameda helping to clean up the beach. A child was picking up garbage and suddenly was stuck with a needle and syringe discarded in the sand. So, there’s a lot of panic. Or a kid comes sliding down the slide and lands at the bottom of the slide, and gets poked with something and it’s a used needle that somebody discarded into the sand pit.  Horrible, right?
     The good news is that those types of exposures are extremely unlikely to transmit HIV. But you can’t just tell parents, “Don’t worry about it.” You have to educate, to discuss, you have to tell them what the options are. You have to tell them what the benefits might be to preventive treatment, and the side effects of the meds, and the need for repeated testing. We do all of that.
     The one thing I've started to say is that the federal government, through NIH, was one major source of funding for us. But that funding was lost ten years ago. But the Health Resources & Services Administration also funds the Ryan White program.
     Ryan White was a teenager who had hemophilia, a bleeding disorder. When he was an adolescent, Ryan’s school and community were strongly opposed to having him in the school and did a lot to make his life and his family miserable.  The treatment for his hemophilia is an injectable medication called Factor VIII. In the early 1980s, one vial of Factor VIII was made from blood collected from 10,000 blood donors. All it took was in one infected donor for that concentrated vial to have enough HIV to transmit HIV to the patients who receive it. So, 98% of hemophiliacs who got Factor VIII during the early years of the HIV epidemic, before we learned how to heat treat the Factor to prevent the transmission—and before the development of single-donor methods of concentrating Factor VIII—98% of those people got HIV. And basically, it wiped out a generation of hemophiliacs.

RW:  Wow.

Dr. Petru:  We had 15 or 16 hemophiliacs at Children’s Oakland. We also had about 16 of 17 kids who were transfused, like my Patient Number One, with contaminated blood from various blood banks, before they got the routine screening implemented.
     First, the controversial part was eliminating potentially infected donors because there were no good markers for HIV.  As an alternative to having a blood test, the blood banks decided to eliminate as donors anyone who had behaviors that were then associated with a higher risk of having HIV. If people admitted they were gay, they were excluded as donors. Well, it wasn’t being gay that made the blood contaminated. It was having HIV. But we didn’t have a way of testing for it, initially. So there was a huge backlash because of that.
     Anyway, we had 16 kids who were infected after receiving blood transfusions in the early to mid-1980s. Another very interesting aspect of this is: how do you find people who have been transfused in the past?  We certainly had premature babies in the early 1980s who might have been in the nursery for three months before going home. The parents might not realize that they’d gotten blood transfusions.  So, we did a “look-back” program. We sent out 3,000 letters to the families of all children who were transfused between 1979 and 1985. Three hundred families responded.  We tested those 300 kids and found 17 were infected. So about 5% of those who received blood transfusions in those highest risk years were HIV-infected.

RW:  Just listening to your story, but on a different note, the question pops up, how many hours a day did you work? And how many hours a day do you work now?

Dr. Petru:  They’re still asking that question. I'm basically at work before eight o’clock, and I'm usually there until six, or seven, or eight o’clock at night. Then I bring my work home and finish it on the computer at home. It is not unusual for me to work a 60 to 70-hour week. But I do other things as well. It’s not just HIV.

RW:  Like what other things?

Dr. Petru:  I'm the Co-Director of the Department of Infectious Disease. Basically, I'm the director. My colleague is only there 60% of the time. So I run the HIV program. I run the Infectious Disease Department. I'm chair of the Ethics Committee for the hospital, and I'm the Infection Control Officer for the hospital. So, I wear four hats at work, at least. And I also take care of kids in the hospital or in the clinic with other infections who need evaluation and treatment. I've got a lot I need to accomplish. So I can’t quit and I can’t leave now, you know? I don’t have any plans to retire. Next year I'll be 65, but my mom worked until she was 85. That’s a precedent to follow!

RW:  You have a real vocation. An amazing man, A. K. Coomaraswamy, suggested that you could measure the health of a culture by the percentage of the people in the culture who had a vocation. In traditional societies, he said, basically everybody finds a vocation, so everybody ends up doing what they love doing. But in our culture, not that many people are doing what they love to do. You’re one of the lucky ones.

Dr. Petru:  You know, I never applied for a job. It all fell into my lap, one step after another. I applied to medical school, and came to UCSF. I applied for residency, and the guy who became my husband, was a new lawyer. He was living in San Francisco, but working in Hayward. So I made a decision to apply to Children’s Oakland over all the other options, because I wanted to be reasonably close to where I was working. I came to Oakland and fell in love with what my boss was doing, which is this fascinating world of infectious disease. I finished medical school in ’78, and came over here and did my residency between ’78 and ’81. The infectious disease fellowship and chief residency kind of all overlapped. So by ’83, I was done. At that point, I had a daughter, and the next year I had my son. I wanted to live close to work, and Children’s is only seven minutes away. A lot of things have worked really well for me, and I feel very fortunate.

RW:  Here’s another question. What do you think about our healthcare situation in the U.S.?

Dr. Petru:  It’s a mess.

RW:  Do you have any thoughts about that?

Dr. Petru:  I really think about the world of the people I deal with every day. I can’t solve the national problem. But we have a deep commitment at Children’s to take care of people, regardless of who they are and whence they came. I'm worried that what’s going in the government right now, with the push to repeal and replace Obamacare, is going to destroy what we have.

RW:  Would you say a little more specifically what you mean by that?

Dr. Petru:  It’s the threat to take away healthcare from people who are poor, who are immigrants, who are underserved, who don’t make enough money to buy their own health insurance. 71% of the kids in our hospital have Medi-Cal as their primary health coverage. If kids are born in the United States, and born in California, and their parents can’t afford it, they will qualify for Medi-Cal. If they come in from another country, because they’re brought in as small children, it’s not the kid’s fault that they’re undocumented. Those kids still need care.
     We’re going to be there to take care of the ones we can, as much as we can, for as long as we can. But a hospital that takes care of primarily Medi-Cal patients, cannot sustain itself. So in an attempt to sustain the hospital for the future, we affiliated with UCSF. There was an attempt for a while to affiliate with Stanford, but Stanford said it would cost them too much to have our hospital under their wing. So they walked away from the deal. We affiliated with UCSF, hoping that by affiliating with a bigger institution, we could somehow save costs and be able to maintain the hospital to provide the services for the community that we serve, that we love, that we feel needs our services.
     The challenge is that we’re continually losing money. And Stanford is opening clinics in our neighborhood and attracting only insured people. All they want is people with private insurance. They don’t want our Medi-Cal or uninsured population. So that’s leaving us with even more Medi-Cal patients, while we need the insured patients to maintain the bottom line at a reasonable level.
     So now we’re losing more and more private pay patients. We have fewer patients in the hospital, because we’re managing to keep the hospitalization shorter, which is better for the patients. But we don’t make money when the beds aren’t filled. So the hospital is losing ground. As a result, they’re looking at ways to cut corners. They’re talking about, for example, cutting out the federally qualified health center—FQHC. That’s federal money that comes to clinics in underserved communities, and we’re reimbursed at a better rate for seeing patients in the FQHC than we might get from Medi-Cal alone.
     We’ve been convinced that the FQHC was a good thing to have. We moved a lot of clinics in there, because you have to physically be in the space to qualify and now, all of a sudden, they’re thinking that the FQHC might be a money loser. They were talking about closing it.

RW:  They? Do you mean the federal government?

Dr. Petru:  No. The hospital is looking at how are we going to save money? How can we do this and not go under? And they’re talking about stopping the provision of primary care for these kids.

RW:  I thought I heard you say the FQHC reimbursed you at a higher level.

Dr. Petru:  That was the plan.

RW:  But it hasn’t happened?

Dr. Petru:  Apparently. They’re saying it’s still losing money for the hospital. So I don’t know what’s going to happen with that, and I'm really worried about it. They’re talking about trying to make the hospital more of a specialty hospital, with a focus on oncology and neurosurgery. But where are those other kids going to get their care? So there are always financial worries, but they make it sound like the current ones are worse than we’ve ever faced before.

RW:  Do you know the history of Children’s Hospital?

Dr. Petru:  To some degree. It started in 1912 as the Babies’ Hospital, by two women—Mabel Weed and Bertha Wright. It’s one of the few hospitals that actually started as a children’s hospital (in contrast to Children’s in San Francisco, which was basically an adult hospital with a children’s ward when I was rotating there in 1976).

RW:  Somehow, I've absorbed a feeling about Children’s Hospital in Oakland, that it’s a very special place.

Dr. Petru:  It’s definitely a very special place. There’s an incredible feeling being there. There are a lot of issues we would love to fix, but when you start talking to families about what it means to have their care at Children’s Hospital, it’s a very different experience.

RW:  Can you expand on that?

Dr. Petru:  We get kids who have been in other hospitals, where the care provision is not focused on children. You get adult providers treating people like they’re just small adults. A lot of clinical and emotional issues that kids face are very different than the adults. We get kids who were taken care of in another institution because of seizures, or psychiatric problems, and those hospitals may not be aware that there are particular entities that cause mental status changes and movement disorders in children, that they’re not simply “crazy.” At Children’s Hospital Oakland, we focus on making the right diagnosis and giving them specific treatment.
     We’ve had kids who have been in another hospital with pneumonia, treated as a common community-acquired bacterial pneumonia, but the kid’s not getting better. Finally, the kid is sent to us, and it turns out that the problem is an unusual fungal infection that’s seen commonly in the Central Valley. If the diagnosis is not considered, it’s extremely hard to know what to treat and how to treat it. They sent the kid to Oakland, and it turns out the kid had a very treatable disease, but it was a long haul. It takes a lot of commitment.
     The financial people will tell you that it takes a disproportionate number of providers to take care of each patient in a children’s hospital compared to adult facilities, because you have to feed them, bathe them, hold them and give them their medicine. You can’t just put the medicine cup on the counter and come back in ten minutes. You have to stand there, you know? So, it takes a lot more to provide care for children.   
      
RW:  It’s like the human aspect of care, which is expensive. Right?   
  
Dr. Petru:  Definitely. And that’s what it comes down to, because most of the money I need to keep my program going is to pay skilled staff. We don’t have a lot of gimmicks, or equipment, or procedures that we do that we can charge for in the world of Pediatric Infectious Diseases. We obtain histories, examine patients, review labs, review the relevant medical literature, discuss cases with colleagues, put the data together, extrapolate from that what’s the most likely problem, and how to treat it. It costs more and more to pay for a nurse. As with all staff in a hospital setting in the Bay Area, they get a raise in salary each year. So the reality is that it costs more and more to keep the same number of people, and the outside sources of money to fund our people are drying up.
     So over the years I’ve kept an account I call the pediatric HIV program support fund. For the last 30 years, I’ve kept that fund at a certain level—$100,000, with the idea that anytime I needed money to cover somebody’s salary because we lost a grant or I needed to hire somebody new, I had that as a cushion. But that money has now gone down to less than half, and I have no cushion left for funding the HIV program.

RW:  When you say you kept it, you mean in the context of the hospital?

Dr. Petru:  It’s like a savings account at the hospital that I use as a backup.

RW:  Nowadays, $100,000 sounds like pennies.

Dr. Petru:  It is pennies. But that’s what I did. We’d get $10,000 from the SF AIDS walk and we’d get $5,000 from an organization like Speedy Oil Change, which held car washes and offered service to customers to raise money for us for a weekend. Or somebody had a bake sale. It was never more than $10,000 at a time. And those contributions are just disappearing.
     So once or twice a year, I stick my neck out and really start begging. The San Francisco AIDS walk is a nice way for us to do it, because they have a large number of supporters. And 80% of what we raise through their organization comes back to us. This year we raised about $8,000.

RW:  Now I noticed the name Benioff connected with Children’s Hospital.

Dr. Petru:  Yes.

RW:  This guy has a lot of money.

Dr. Petru:  He has a lot of money, and he wants to put it to good use. I'm not clear on all the details of what he’s done at the 2 campuses, but I understood he gave $50 million to Children’s Oakland towards our building projects. But we need $500 million. We need $800 million to be able to build a new building. So there needs to be a tremendous increase. I know it’s good for Children’s Oakland to have the name and have the affiliation, but it’s another challenge to have two very disparate collections of physicians under the same name coming to work together as one.
     It’s because we serve two different populations. We’ve got geographic differences. They’ve got an entirely different faculty and research funding structure than we have in Oakland. We may see more clinical patients. They may bring in more research dollars. So how is something equal? How do you decide when things can work well? When one department works on both sides of the Bay, then you get parity. But they're all faculty from UCSF. There are seldom Children’s Oakland-based people who go over there.

RW:  I wonder what you think of the development of, I’ll just call it robo-medicine.

Dr. Petru:  I think some aspects of medicine lend themselves to that. For example, for a long time, they’ve been pushing telemedicine. For a community 300 miles from here, in a remote area, where they need help handling or managing a patient, they have a little walking robot that has a computer screen and a camera. They will show the image of the patient which the physician on the other end will see. We can help them walk through the management of a difficult patient.
     My work in infectious disease doesn’t lend itself to that very well. I've never pushed for it. There are other fields, like dermatology, where looking at the rash, looking at the patient is really important. But you can do that with via telemedicine. It might be much easier for them to do it, but who takes responsibility for the patient?
     Is it my malpractice, or is it your malpractice? You’re the one holding the telecamera. What if you show me this arm, but there’s a worse lesion on that arm, and I'm not seeing that lesion? It raises a lot of concerns. And how do you bill for it? Who covers it? So, I'm not tuned into the details of that.   
       
RW:  Right.

Dr. Petru:  But they’ve asked us to think about it. If I can’t speak the language of the patient, what helps best is to have somebody in the room who speaks the language. But when we can’t get an interpreter in the room, we have a system that provides remote contact with an interpreter who sits in a shared room with other interpreters with headphones. Their little robo-screen is in the room, and I say something. But there’s some delay, and there are some sound issues. Sometimes they’ll ask me again, “Is this what you said?” I'll say, “Yes.” And then she says it in whatever language. Then this person talks back to her, and she talks back to me.  It takes twice as long and is really tedious. But there are 41 languages, or something like that, that we need fairly often and we don’t get many interpreters who speak some of the other languages. But I'll give you another example of a happy story.

RW:  Okay. Good.

Dr. Petru:  This is of girl who came to the Unites States when she was nine. I don’t know what the story was in their country of origin, but the father came here first. And after five years of being here, he was diagnosed with HIV. He’d remarried. He was getting some care for his disease. His wife was extremely worried about getting it herself. So behind the scenes, the new wife called us and asked for help. Why she called us and not an adult provider, I can’t tell you. But after ten years of being in the United States, his ex-wife died. Nobody wanted to take care of the children. His new wife said, “I'll go back there.” And she brought the 9 year old daughter back with her.
     But she didn’t want the husband to know she’d disclosed to me that he had HIV.
     I said, “No problem. Just tell him we do an evaluation of many immigrant kids and that we want to do a routine assessment of her.”
     So the father brought the child into our clinic five days after she arrived in the United States. She was nine years old, adorable, very small, with a lot of rotten teeth, a bad chronic sinus infection. She was hardly eating anything solid because her teeth didn’t work well, and it was hard for her to swallow.
     I examined her. She had a horrendous rash that was the scarring left after a child has early onset of chickenpox and then develops shingles, which leaves a scar in a distribution of swatches that leads from one part of the spine along nerve routes to a part of the torso. The family had thought it was because some “servant” spilled hot water while making tea, and she got burned. But it was because she had shingles and they didn’t know it. I could see that from the scarring. And all these other things about her exam were really striking.
     The father was serving as the interpreter, and I said to the father, “You know, your daughter seems incredibly smart.” Because every question I asked him, he would ask her. For the nine years she grew up in Africa with her mother, he was in the U.S. So he was getting to know her through my questions—which he wasn’t hesitant to ask her point-blank. The way I worded the questions was the way he worded it to her.
     So after I had enough of an exam to be pretty confident that she had HIV, I asked, “Can you tell me what kind of illnesses people have in Africa?” And she said, immediately and without hesitation, “Well, there’s AIDS.”
     First thing, just like that, “There’s AIDS.”
     I asked, “What do you know about AIDS?”
     And she said, “Well, people die of it.”
     I said, “Do people have medicines?”
      And she replies, “No. There’s no medicines in Africa.”
     I said, “Well, if people had medicines, do you think that they would do better?”
     And she said, “Yeah.”
     I took the father aside and I told him—and I told her directly then—I said, “You know, you’ve come to the United States. Your dad is here. I'm here, and you have the same virus they had in your country, but the difference is that we have medicines for you.” So from the day I met her, I could disclose her diagnosis to her and to him, and together we could move forward, by educating her and her father, simultaneously.
     In those days, I had a neighbor, Jack Soares, who was the public relations person for the San Francisco chapter of the Girl Scouts. They’d just completed their annual cookie sales. They could no longer sell the cookies, but he had a pallet or two of extra Girl Scout Cookies, so he’d brought me a few cases of Girl Scout Cookies.
     So here’s this skinny kid who just came from Africa who has rotten teeth. We did everything in the way of lab work, and I was pretty confident she had HIV. So I sent her home with a couple of boxes of cookies. Unbeknownst to me, the father and daughter took the boxes as a prescription: “Thou shalt eat these cookies.” She did and the next time she came back, she’d gained a lot of weight, but still needed dental care for her cavities. And eventually she thrived. That was a number of years ago.     
     Among other things, her father got sicker. He had anticipated his own death, and had worked with us to ask for help identifying other families where his daughter could live, to be with others who knew about and weren’t afraid of HIV. We helped make that connection. After the father died, the girl, who was then 16, called the other mother on the phone and said, “Can I come and live with you?” Can you imagine that? A 16-year old. “My dad told me I should call you to see if I could come live with you.”
     Her own mother had died in Africa, as had her brother. Her stepmom was here and couldn’t deal with the dad dying, and now our patient needs a place to live.  So she moves with them, the only dark-skinned kid in a very conservative, Sierra Nevada, community. But she goes there. She gets through high school. She goes to college. She transfers to Cal State Long Beach. She graduates with a degree in social work, and she’s working in Los Angeles helping homeless youth.
     I mean, isn’t that an incredible kid, a truly incredible kid?  When you ask what I'm most proud of, it’s these kids who’ve succeeded, the kids who’ve gotten through and managed to make a life for themselves, and find their path in the world. They’re pretty incredible. There are not a lot of them, but they’re amazing.

RW:  I was just going to ask who inspires you? And I think you just answered that.

Dr. Petru:  Yes. I mean, talk about a difficult childhood, you know? You lose your brother, you lose your mother, you change cultures. You have to learn a new language.  You’re somewhat rejected by your stepmother. Your father dies. You go to live with another family. That’s all one kid in six years.

[Dr. Petru early on with an HIV-infected child born in Africa]


RW:  It’s unbelievable.

Dr. Petru:  We had another subsequent adoptee from Africa who needed someone to talk to, and so we contacted that other patient in southern California. We put them in touch with each other and they’ve become friends. I mean she’s a role model.

RW:  That’s an amazing story.

Dr. Petru:  Yes. There was one time in my life when I was going back and forth to Washington. I was doing it three times a year for these meetings and it was hard on my own kids. At one point, they actually went with me, the year my marriage fell apart. That’s a another story. But on one of these trips, I was spending a lot of time on the plane thinking about the emotional gap in my life. What was it that’s made me feel sad all the time? What am I going to do with that? And I decided then to write the stories of all the kids who have died.

RW:  Wow.

Dr. Petru:  I didn’t want to forget them. And for some of the families, I’d written poems, something to share at the memorials. I’d never been to a funeral in my life, until my patients started dying of HIV. The whole idea of being in a church for a funeral didn’t appeal to me.  It felt like somebody was going to preach at me (and they often did). I've been in a few churches where the preacher was definitely taking advantage of the audience and never even used the name of the child who died, but many more were warm and open, and deep, meaningful sessions. But many of these families had lived in isolation. The parents didn’t want people in the community to know, because they themselves were still infected and living with this virus. But where it felt comfortable to do so, and with the parents’ permission, I would either tell the child’s whole story or part of the story. And for some, where I didn’t have as much to say, I actually put it in the form of poems that I wrote for the kids.
     But when I realized I was carrying this deep sadness, it was also when my marriage was falling apart and when my dad died, all in one year. Then I just decided to write everything I could remember. Someday, I might publish it.

RW:  That would be interesting to see. Is this an ongoing project?

Dr. Petru:  Well, fortunately, now nobody’s dying. So, I haven’t had to, although there’s one kid I probably haven’t written anything for. That was another super-challenging situation with a family also in Africa. The father is in the military. They have four children. The oldest one was in college in the US. The mother came to America to try to get her feet on the ground and work to bring the family over. Then she got sick. Walking in a crosswalk, suddenly she couldn’t breathe, and ended up being diagnosed with the bad type of pneumonia that people die from with advanced HIV disease. She started on treatment and gradually recovered.
     About five or six years ago, the two sons come over, maybe 10 and 11 years old.  The younger, very thin and small, brother was taken to the county hospital because he was so thin and his mother was very worried. The doctors there wanted to do a workup. They needed a signature from a parent to do an HIV test. The mom never told her daughter she had HIV.  So the girl came home with the form. The mom didn’t want to sign, but eventually she did. The kid got tested, was positive and bounced over to me.  He had about 100-150 T-cells. He should have over 1,000. Fewer than 200 in adolescents and adults would give him an AIDS diagnosis and he’d never been treated.
     That’s good news by itself, because you asked if everybody dies quickly. I mentioned that there was a group of kids who were infected in utero, and other kids who get infected at delivery. The ones infected in utero never develop a normal immune system. They get sick quickly, and die quickly—and that includes about 20% of kids who are infected.
     The remaing 80% are infected at delivery—or even after delivery, if they get breast milk from an infected mom. So he may have been one who got infected at delivery, and then lived with it. My original Patient Number One went about ten years before any drugs were available. And this kid also was on no meds. Now he’s doing really well.
     But the challenge is, how does this family cope with all this? The older sister eventually went to medical school. Our patient has thrived and now is doing very well in school.

RW:   Since you brought it up, I can’t resist asking you about the sadness you mentioned… 

Dr. Petru:   Well, the obvious sadness was with my marriage falling apart, and with my dad dying the same year. And I had a hard time trying to figure out where some of the sadness was coming from. Before any drugs were available, or any treatment, I was taking on this increasing population of patients. So I've had 51 kids die. Although I haven’t been to 51 funerals, since not everybody had one. But there has been a lot of sadness, many losses and a lot of frustration that I couldn’t have made their lives better. Now the tools are there, and I’ve found other ways I can take care of myself. I took care of my kids. My kids are great. They’ve grown up beautifully. I do things to take care of myself, so I've been able to deal with some of that sadness. I channel it in other ways.

RW:   I think I remember Grace saying something like, “It was a hard deal,” back then.

Dr. Petru:  Right. But I didn’t go into this to have fun, you know? Part of life is the sadness that people experience, and you need to try to help make every bit of it a little bit better. There were times when kids were dying, and I knew I couldn’t stop them from dying. Then I had to do what I could to make the death less painful, less emotionally traumatic for the family. I could tell you again, stories, stories, stories.
     There was one little kid, who was born in 1988. I met him in the Spring of 1989. He was adorable. He lived to be about seven or eight years old. He was born before there were really good drugs, and there were two things that happened. One is that he loved to be on the phone. He was in the hospital a lot, and whenever he was in the hospital, he would ask to be able to call me. He would call from whatever ward he was in, and he’d take the phone. He’d say, “I want to talk to Doctor Petru! Is she there?”
     I’d come to the phone and talk with him. Or sometimes he would talk to the nurse, and he would say, “This is Doctor Petru!” He’d pretend to be me and tell funny stories. He was really a kick. He was so funny.
     But as he was dying, his great-aunt was his caretaker. It was a long story before that, with court testimonies about who’s the better person to take care of him, his grandmother or his great-aunt. The grandmother only wanted to take care of him when there was money attached. His great-aunt took him because she loved children. So in court, I had to testify that the great-aunt was a better caretaker. She was just wanting to give him TLC and protect him. The grandmother would come over and demand he come with her. She had no understanding of early child development. She’d send a relative to take a crying two-year-old from somebody’s arms, and put him in the hands of somebody he’s never met, and walk away with him. It was so traumatic!
     Anyway, I’d testified in court. He stayed with his great aunt for a while, but eventually, she gave up the fight and he went back to the grandmother.
     And grandmother was in the room. The kid is lying in the bed. The grandmother is sleeping in the windowsill in his hospital room.  The kid sits up in the middle of the night on his bed. He says, “Granny, come over here!” And Granny comes over. Then he starts going through a package of stuff he had by his bedside. He was assigning which of his siblings or cousins would get which of his toys. He was only 8 years old.

RW:  Wow.

Dr. Petru:  He did that at two or three o’clock in the morning. Then he went back to sleep, and he was dead by morning.

RW:  Oh, my gosh.

Dr. Petru:  “Granny, come over here! Boom, boom, boom, boom. I want her to have this, him to have that, him to have that.” And then gone.

RW:  That's really striking..

Dr. Petru:  Then, you know, there was a kid who refused to die. We were waiting, and waiting, and waiting. We knew she was dying, but we didn’t know when. Nobody knows when. And parents always look at you, “When is it going to happen?”
     I'd look at the kid and think, “You know, he could go like this for two weeks, for all I know.” And he dies that night.
     There was one kid who was at home with adoptive parents, who never told a soul about the kid’s HIV. They were very active in their church community. The kid was four years old. She loved purple. At the funeral, the entire kindergarten class came to the funeral. Why do you send kindergarten kids to funerals? I don’t know, but they did. And somebody brought a huge bunch of balloons. And this was a kid for whom I made house calls. I did that in those days, when there was a need for it, to help the families cope with what to expect with a child dying, and knowing there was nothing more we could do.
     She was upstairs in a bedroom, so they were rotating—a vigil. Then they decided to have a meal together and they all went down leaving her alone upstairs in her bed. While they were downstairs having the meal, she finally died, peacefully. I think she was waiting for that quiet moment when everyone would just get out of the room and leave her alone. You know, “Don’t bug me. Let me be and go in peace…”
     So at the funeral, after the church service, they went outside on the sidewalk. I can just see this crowd of about 10 or 15 little girls, all dressed in their finest, and they’re each handed a purple helium balloon. The minister comes out of the church and says, “Okay, girls. Now you can let the balloons go, so they’ll go up to Heaven with our little patient.” The girls let go of their balloons, but there’s a big gust of wind. It pushes all the balloons under a giant cypress tree, where they get stuck and don’t go up to Heaven. So we’re all waiting for another big gust of wind. It was like she wasn’t ready to let go.

RW:  Oh, no. A good metaphor gone bad. It brings up a question about life in a hospital. I think there can be something more alive there because of the presence of the reality of life and death. Do you have any thoughts around that?

Dr. Petru:  I have a biased perspective, because most of my contact with the sickest patients is in the hospital setting. I don’t go to their homes to see kind of what their lives are like at home. But I know there are a lot of children who get more attention and more profound interactions with people in a hospital setting than at home. There might be a lot of siblings, or other people in the house who don’t necessarily connect with the kids in the same way. I’ve also seen some dramatic transformations when kids are in a hospital versus at home. The line between life and death is really a fine one. We have a lot of kids who are living on the brink.
     And this sort of overlaps with my role in ethics. There are a lot of families who feel that a heartbeat means you’re alive, and nothing else is important. There are others who feel like if the kid can’t enjoy anything, it’s not a life they want for their child. So we’ve dealt with that in many different ways in the HIV world, as well as others. In a word, families are really torn apart by one parent wanting the kid to be kept alive at all costs, and the other parent paying the price. The mother is ready for the kid to die, he has no function, no interaction, except that he has a heartbeat with 24/7 care, ventilator, tracheostomy tube, feeding tube, catheterizing, with everything done to the child. But not necessarily for the child. You know? So, life and death. I mean, it’s huge.

RW:  And the story you told about the dying child who woke up and said, “Grandma, come here.” There’s something so extraordinary about that story. How old was that kid again?

Dr. Petru:  He was eight.

RW:  His clarity in the face of death was awesome.

Dr. Petru:  He was an amazing, amazing child.   

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About the Author

Richard Whittaker is the founding editor of works & conversations and West Coast editor of Parabola magazine.                      

 

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