Doctor Elaine Abrams and Doctor Stephen Nicholas

DATE August 5, 2002 ACCOUNT NUMBER N/A
TIME 12:00 Noon-1:00 PM AUDIENCE N/A
NETWORK NPR
PROGRAM Fresh Air

Interview: Dr. Elaine Abrams and Dr. Stephen Nicholas of Harlem
Hospital Center discuss boarder babies
BARBARA BOGAEV, host:

This is FRESH AIR. I'm Barbara Bogaev, in for Terry Gross.

In the early 1980s in New York City, the number of babies born with HIV soared
and the community of Harlem was the hardest hit of all. The HIV-infected
infants in Harlem Hospital Center were often given up or abandoned by their
HIV-positive mothers, many of whom were addicted to drugs or too sick to care
for them. The infants ended up living for months, sometimes years, on the
wards and were dubbed boarder babies. By the early '90s, HIV births had
dropped. Foster parents had stepped in to care for many of the children, and
the boarder babies phenomenon virtually disappeared, but the children who
survived are now in their teens and are encountering unique medical and
psychological problems living with HIV. Dr. Elaine Abrams is the director of
the Family Care Center at Harlem Hospital Center, and Dr. Stephen Nicholas
heads the pediatric unit there. Both of them have treated the boarder babies
since the very beginning of the epidemic and helped to establish New York's
first and only group residence for children with HIV. I asked Dr. Nicholas
what the medical community knew about pediatric AIDS in the early '80s, when
these babies first appeared on the wards.

Dr. STEPHEN NICHOLAS (Pediatric Unit, Harlem Hospital Center): These were
frightening times I think for everybody trying to understand what this disease
was, and at the time, we didn't know whether it was infectious, whether it was
something toxic. Clearly by the time children were diagnosed with AIDS, it
began to look like some sort of epidemic, some contagious sort of epidemic,
but we understood the disease very poorly. And the children we were seeing
were presenting very early in life with severe life-threatening illnesses and
they were dying. Our sense at the beginning of the epidemic is that most
children would not survive who had this, that most children would die by the
time they were five years of age.

Dr. ELAINE ABRAMS (Family Care Center, Harlem Hospital Center): We have to
keep in mind that at the time this was still thought of as a gay disease. So
the fact that we were beginning to see sick children also began to transform
our thinking about what this infection was about and how it could be
transmitted. And to some extent, it also made this a more acceptable disease
because children seemed so much more vulnerable than, you know, gay men who
were being blamed for this, you know, grid infection at the time.

BOGAEV: So how quickly did you have a situation where babies were boarding at
the hospital, housed on the ward?

Dr. NICHOLAS: The boarder babies began to appear one by one, but the increase
in numbers was almost logarithmic. The reason that they came and stayed with
us in the hospital was not necessarily because they were sick but because they
had nowhere to go, and some of their parents had died. Many of them had
drug-using parents who were simply not able to give adequate care, and so they
needed foster care. But these were times when the foster care system in New
York was overwhelmed. There was fear about whether or not these babies were
safe to be around other children. And quite frankly, people were afraid often
to be in the same room with a child with AIDS. And so we found ourselves in a
very difficult situation providing boarding, as it were, for these babies,
giving them their room and board in the hospital.

Dr. ABRAMS: There were overlapping epidemics. It wasn't just HIV. It was
also drug use, and that over time, it wasn't just intravenous drug use, but
the crack epidemic severely affected the ability of many families to care for
these very vulnerable and sick children. So we saw two things happening
simultaneously which led us to this boarder baby epidemic.

BOGAEV: So what were the conditions like on the wards for these children?
Did they have toys or could they move around freely?

Dr. NICHOLAS: Harlem Hospital is a typical city hospital, which means that it
doesn't really have huge amounts of funding. And the care there is the best
that we're able to provide with scant resources. Hospital environments are
really meant for children to come and go quickly. So we treat them, they get
better and they leave. In this instance, though, children were really stuck
in the hospital in an environment where we didn't really have enough staffing,
we didn't have volunteers. Oftentimes, the parents had disappeared from the
scene and weren't visiting regularly. So effectively these children were
abandoned on the wards of the hospital.

One of the terrible things about hospitals is that they've got all these
rules, and so children could not easily, for example, be taken outside to
play. Many of these children never saw the sunlight or butterflies. They
were stuck in the hospital, and this was a terribly inhumane circumstance
which really meant that we hospital staff, as imperfectly prepared as we were,
became surrogate parents, and the nurses, the doctors became the surrogate
parents for these children.

Dr. ABRAMS: And that's very much what happened. As the children stayed on
the wards, they were essentially adopted by the hospital staff and the nurses
in particular really came around and were able to provide very, very nurturing
environments despite the fact that it was a hospital ward. And many of the
children had, you know, special nurses who would come in on weekends and spend
time with them. There were many birthday parties that were celebrated and
first steps taken by some very, very sick children.

You know, I have a favorite story of a nighttime nurse who used to bring in
chicken bones because she thought children learned to chew if they could chew
on a chicken bone, and she'd, you know, bring them in for one little boy who
was having terrible trouble learning how to eat.

Dr. NICHOLAS: The other extraordinary thing that happened during this
period--you've got to remember that in the early days, nobody knew what
caused this disease. Did it fly in the air? Did it crawl up your leg? How
did you get this? And we had a baby that was born to a very sick pregnant
woman who then ultimately died of AIDS. The little baby was brought up to a
isolation room, and in the early days, people wore gowns, gloves, masks and
were really afraid to go in. And yet what was interesting is the days went
by--well, this was a baby after all; we were all pediatric staff; we love
kids--and you would see that, well, the door would be ajar and suddenly
there's a toy and the nurses would be in there cooing to the baby. And in a
very funny way, it was true humanity that helped our staff overcome a lot of
the early fears of this disease.

BOGAEV: Dr. Abrams and Dr. Nicholas, did you both develop personal
relationships with some of the kids on the wards who had long stays?

Dr. ABRAMS: Oh, absolutely.

Dr. NICHOLAS: Yeah.

BOGAEV: Could you tell us about that?

Dr. ABRAMS: Oh, there was, for me, one little boy in particular who was on
the wards for many, many years, a little boy named James. And he was really
central to almost the entire boarder baby experience because he had been in
the hospital for so long. And this was a little boy who had multiple medical
problems and needed oxygen and was very delayed in his development, but yet,
he was completely responsive to all of the love and care he got while he was
with us. And we celebrated every birthday and every new milestone this child
made--when he sat up the first time, when he walked. And he became sort of
the symbol to some extent of how inhumane this whole experience was, why this
little boy could not go home and have, you know, a mom and dad.

Dr. NICHOLAS: James really was the poster boy for boarder babies with AIDS.
He was born on Christmas day in 1984. Went home briefly. He had a mother who
was a drug user out on the streets not capable of giving adequate care, and
James came back at just a few weeks of life with some trivial infection, was
diagnosed, and then he had nowhere to go. He needed a new home, had nowhere
to go, and he very much symbolized this whole group of kids that had largely
been forgotten, a group of kids many people were afraid of, a group of kids
who were poor, primarily African-American and Hispanic.

And it was in the name of James that we began taking on an usual role as
pediatricians. I mean, we're trained to be doctors and do things medical and
scientific, and we really thought somebody out there was going to step in and
solve this boarder baby problem. And it didn't happen that way. We really
became--I think because we saw these children daily and also saw that other
systems out there, the government, social services, the foster care agencies
were not really doing anything about this problem because they were
overwhelmed with so many other problems that we were in the usual position of
creating a collaborative group that led to the creation of the first residence
in New York in an effort to try to get kids like James out. Unfortunately,
James died six months before we were able to open up a new residence.

Dr. ABRAMS: He actually died on my wedding day.

Dr. NICHOLAS: That's right.

Dr. ABRAMS: Yes.

Dr. NICHOLAS: That's right.

Dr. ABRAMS: I felt personally very tied to this little boy who had been born
on Christmas and then died on the night I was married.

Dr. NICHOLAS: October 23rd.

Dr. ABRAMS: Yes, exactly.

Dr. NICHOLAS: Yes.

BOGAEV: I was thinking reading about this boarder baby phenomenon that it's
so hard to understand why these children were left on the wards, why there was
no social service agency or long-term care facility or some other institution
to fill in this crack, but it also occurred to me that it really is
understandable that foster parents would shy away from taking on a baby with
severe medical problems. But I wonder if prejudice and disinformation about
AIDS played a big role in keeping foster parents from taking these kids.

Dr. NICHOLAS: I think there were a variety of reason, and I think at the
time it seemed very reasonable that most people would not be willing to take
on a boarder baby with HIV because the perception, remember, was that almost
all of them would die, which meant they'd be in and out of the hospital. So
that's very tough. There was fear about contagion. It wasn't until really
'87, '88 that we began having some preliminary evidence that HIV did not
spread, but it knew it was very much like hepatitis B. We know that in any
sort of a group setting where you've got small children that hepatitis B
easily passes through saliva. So the question was: Can you safely put a kid
with HIV who's--you know, 18-month-olds share their slobber with the world,
right? They go around and they're drooling, etc. Is this a safe thing to do?

So there was the fear of contagion. Then, of course, there was the fear of
stigma. Even if I'm brave enough to do this, brave enough to take care of a
child who may be dying, brave enough to overcome my fears of contagion, what
will happen? Will the neighbors quit coming to me? Will my own children quit
eating the food that I prepare? And we encountered all of these issues.

Dr. ABRAMS: And the system wasn't prepared to support families to do this.
You know, the foster care system just had not thought through or developed
systems in which they were able to support families who took home children
with very complex medical and social needs.

Dr. NICHOLAS: Remember also that this whole boarder baby story unfolds
against this backdrop of worsening poverty in New York, increased
homelessness, increasing amounts of child abuse and neglect, increased amounts
of IV drug use, then the AIDS epidemic, the crack epidemic. What that
resulted in for New York City was a foster care system that in the late 1970s
really had this sort of rosy view. You know, we're kind of closing down
here. We've got foster care and adoption for a few kids that need it. Things
are getting better, and then--wham--before they knew it, there are all these
other social issues.

And so the numbers of kids going into foster care in New York City went from
6,000 in the early '80s to 60,000 by the late '80s. And so, you see, the
system was reeling from this. Not only were there boarder babies with AIDS
who were by far the hardest to place but they're also these crack babies.
These are simply babies that had been exposed to crack cocaine use by their
mothers, and they, too, were stuck for sometimes months in newborn nurseries.

Dr. ABRAMS: All right. So while on the 17th floor of the hospital we were
taking care of the children with HIV, the neonatologists and the nurses in the
nursery had lots and lots of babies, sometimes as many as 30, who were
crack-addicted or crack-exposed babies who couldn't go home to parents as well
and had no foster care alternatives.

BOGAEV: I'm talking with Dr. Elaine Abrams and Dr. Stephen Nicholas. Dr.
Abrams is the director of the Family Care Center at Harlem Hospital Center,
and Dr. Nicholas is the director of Pediatrics there. They've both treated
many of the babies born infected with HIV in the '80s in Harlem. And they've
been treating and studying these children living with the virus now for more
than 15 years. We'll talk more after a break. This is FRESH AIR.

(Announcements)

BOGAEV: If you're just joining us, my guests are Dr. Stephen Nicholas,
director of Pediatrics at Harlem Hospital Center, and Dr. Elaine Abrams who
runs the Family Care Clinic there. In the '80s, Harlem Hospital saw an
epidemic of babies born infected with HIV and both of my guests treated these
so-called boarder babies who spent long months and sometimes years on the
hospital wards. Now many of the babies with HIV are adolescents. Dr.
Nicholas and Dr. Abrams have been tracking and treating these children and
tracking the effect the virus had on them and on the Harlem community.

You and your colleagues mobilized city support and grants and charitable
organizations and you helped found New York's first group residence for
children with HIV, Incarnation Children's Center. How did your situation at
the hospital change once that center was up and running? Did it immediately
clean the wards out of boarder babies?

Dr. ABRAMS: Yeah, there was a significant and notable difference. Suddenly
we had a place where the children could go, a place they could be called home.
It was not an actual home, but the residence was completely wonderful, filled
with nurturing caretakers and lots of activities and a place that wasn't
considered a hospital where everybody who came into the room wasn't
necessarily going to draw your blood or give you some medication. And it
facilitated a change in our thinking, enabled us to really plan for a future
for the children outside of the hospital wards.

It also began to mobilize the foster care community so that more families
found it acceptable or were actually enthusiastic about taking these children
home so that there were two things that were happening. We had a place to
send children or to place children who weren't otherwise able to go into
foster homes, and then we began to see more and more foster homes available.

Dr. NICHOLAS: When we opened up Incarnation Children's Center, it was with a
collaborate group that involved a very unusual group of players: Harlem
Hospital, Columbia University, the Catholic Archdiocese of New York, a
Jewish philanthropist and ultimately city and state government. But when we
opened with 18 beds, people predicted that, yes, you've gotten them out of the
hospital but they're just going to go to your place and they will live there
the rest of their lives. There's nowhere for them to go. People are not
interested in these children. And there were some people who were very upset
that we were opening up a group facility. They said, `You're going to be
warehousing these children. This will be Dickensean.' And so we were under
great pressure to try to get children to Incarnation and then into foster
homes, but it wasn't clear at the moment that we opened that that would
happen.

But the story of boarder babies in New York has got a wonderful little bit of
serendipity that also happened at Harlem Hospital. The month before we
opened--we opened our doors at Incarnation in March of 1989. The month before
Princess Diana came on her first official visit to New York and she wanted to
come visit the boarder babies with AIDS. By that time, there'd been a fair
amount of publicity on television, in the newspapers. And I could remember--I
worked in Harlem for quite a while. I was a little jaded about this. I
thought, `Well, now why is she coming? You know, this is really for her own
publicity.' Well, she came. She was absolutely lovely. She was terrific
with the kids, but the important thing is that a picture was taken of her, the
director of Pediatrics, a nurse and a child with HIV on the wards. Now this
picture went around the world in 24 hours, and it communicated I think very
clearly that these are children who need visibility, these are children we
need to care about.

Well, we opened our doors the next month, and lo and behold, people began
calling. Over the next two years, the average length of stay at Incarnation
was a month. Children came into this 18-bed facility and then they got placed
in foster care agencies, foster homes. And the really wonderful thing about
this story is that over a two-year period, two-thirds of the entire city's
HIV-positive boarder babies came to Incarnation and then went into placement.
We became known as the Ellis Island for Homeless Kids With HIV(ph). At the
end of two years, for the entire city of New York, there was actually a
surplus by that time of foster parents wanting children with HIV.

BOGAEV: Well, that really brings me to my next question which was whether you
can talk about the ways in which--or the toll that HIV has taken on the Harlem
community which was especially hard hit because of some of the factors, the
crack epidemic and poverty, that we were talking about earlier. I think that
I read that in 1993 as many as 1 in 12 African Americans who grow up in Harlem
might have been infected with HIV. That seems just a shockingly high number.

Dr. NICHOLAS: Well, HIV 10 years ago was the number one killer of children in
Harlem, but the big story in pediatrics at least is that in a 10-year period,
because the treatment of pregnant women and the prevention of mother-to-baby
HIV transmission, next year HIV in childhood will officially be declared a
rare disease. And I can't tell you how wonderful that is for us who have
spent so many years taking care of children with HIV to realize that the
dynamics of this epidemic, not just in Harlem, not just in New York, but in
all industrialized countries that have got access to these fairly expensive
treatments is that pediatric AIDS will largely disappear. And so that's
really the best news in this entire AIDS epidemic. The other obvious good
news is that there are good treatments, very expensive ones, for those who are
infected. And so again what we're dealing with is this aging group of
children with complex problems, but many of them are doing very well and
most of them who will live into adulthood. So really in another 10 years, we
pediatricians will not see AIDS in children, at least very rarely.

Dr. ABRAMS: That's in the United States. We have to keep in mind the nature
of the epidemic outside of the United States. And as you look to sub-Saharan
Africa and Asia, the numbers are truly beyond comprehension and there are
children born and dying every minute with this infection. We hope that the
lessons we are learning here will, over the next decade, be transferred and
that all of our gains can be used in these other settings.

Dr. NICHOLAS: Dr. Abrams and I just came back from the Barcelona AIDS
Conference and that was the central message is that because we've got
expertise and because we've got medications, we've really got to push to make
the medications available to resource poor settings because AIDS is such a
huge problem in the Caribbean, in sub-Saharan Africa.

BOGAEV: Dr. Stephen Nicholas is head of Pediatrics at Harlem Hospital Center,
and Dr. Elaine Abrams is the director of the Family Care Center there. We'll
continue our conversation about how the boarder babies have fared in the
second half of our show. I'm Barbara Bogaev, and this is FRESH AIR.

(Announcements)

BOGAEV: This is FRESH AIR. I'm Barbara Bogaev.

Let's continue our conversation about HIV-infected children with Dr. Elaine
Abrams and Stephen Nicholas of Harlem Hospital Center. Dr. Abrams heads the
hospital's Family Care Center, and Dr. Nicholas is the director of pediatrics
there. Harlem experienced an epidemic of pediatric AIDS in the '80s. My
guests treated the children who lived long periods in the wards and were
dubbed `border babies,' and they've continued to provide care for them as
they've grown into their teens.

Now that you've been tracking children born with HIV for more than 15 years,
what have you found to be the long-term fallout of the virus?

Dr. ABRAMS: Well, I have to keep in mind that many, many of these children
died early in the epidemic, and certainly, many of the border babies never
made it to Incarnation Children's Center, and many of the children who were
home with their families did die. I mean, we attended many funerals...

Dr. NICHOLAS: Yes.

Dr. ABRAMS: ...during those early years, sometimes one a month. And the
situation is very different now. Because of extremely successful efforts to
prevent perinatal transmission--that is the child becoming infected during
pregnancy or during delivery--we're seeing very few new babies with HIV
disease being born in the United States today. And because of effective
therapies, many of the children who were born 10 and 15 years ago are living
well into adolescence, and many of them are entering adulthood. Their medical
problems are quite complex. While most of them are in school and very few of
them are being hospitalized frequently, they do have to take quite a few
medicines every day--sometimes eight, nine, 10, 12 medicines several times a
day--and we're beginning to see some very complex mental health issues for
these children and for their families.

BOGAEV: Can we talk first about the medication? Because taking these AIDS
cocktails, as they're called, or so many medications, it's hard enough for
adults. I can't imagine what it must be like for kids. Is it just hard
getting over that hurdle, getting them to remember to take their medications,
and are the pills even the right size for children?

Dr. ABRAMS: All of those are...

Dr. NICHOLAS: All of those...

Dr. ABRAMS: ...the right questions. And the medications are really
developed for adults, so that the bigger children can often take the adult
medications. There are some formulations for children, but many of these
medications are quite nasty, bitter, unpleasant-tasting. And we have enormous
difficulties around adherence to medication regimens. Many of the children
are unable to take all of these medicines on the schedules that they're
supposed to.

Dr. NICHOLAS: We have one very good--one of these new protease inhibitors,
which is called ritonavir, and it does come in liquid form. Now you remember
in the early days when we were just starting to use it, a little five-year-old
came in, and we would teach the mother how to disguise the taste of ritonavir
with using chocolate syrup or peanut butter. So this little guy came in, he
said, `Dr. Nicholas, I want you to know you have ruined the taste of chocolate
syrup and peanut butter for me forever.'

BOGAEV: Oh, poor kid.

Dr. ABRAMS: And for the older children, they're often not quite so
articulate, but they're quite clever. Yesterday we were discussing ways that
children have learned to hide their medications. And a number of the older
kids told us that they had hidden the blue pill--that's a favorite pill not to
take. One place was in the couch. That was a favorite. Out the window when
their mom leaves the room. One child had put all of her pills for three weeks
down the sink, and her father discovered it when the sink got clogged up, and
there were all these blue pills that were stuck in there. So the children
have developed many ways to attend to this problem of adherence. They're
just, unfortunately, not taking all of their medicines. Many of them are not.

Dr. NICHOLAS: It's a huge challenge, and I think you can imagine in any
family setting how difficult it is, even for a short course of medication, to
get children to take it at any age. Different ages have got different
problems. But if you can imagine that many of these children are on multiple
medications multiple times a day, and how does one get children up and get
them ready for breakfast, ready for school, off to school, get them back, have
some time with their friends, do their homework and still manage to get in all
of these different dosages? Especially if you're a single mother, you've got
many kids, you may be sick yourself as a caregiver with HIV.

So the challenge is huge, and it's made worse by several other kind of
wrinkles. In all this good news that kids with HIV are getting older and
living longer, one is the whole question of disclosure, when the children know
their diagnosis. Many times, children are not told until they're well, well,
well, into their teen years because people are afraid to deal with it. If
mothers tell the child their diagnosis, they've got to talk about their own
mortality, their own problems. Also, there's the huge issue of it's a secret
family, and kids sometimes blab, and they're afraid that the children will
tell others about this.

BOGAEV: When I read this in the research, I found it so perplexing, though.
What do these kids think they're taking all this medication for?

Dr. ABRAMS: We find that most of the children actually know their diagnoses,
or have a pretty good idea that they have HIV.

BOGAEV: Even though they weren't told explicitly.

Dr. ABRAMS: Even though their families have not explicitly told them. We
have a summer camp every summer for a week. The staff takes about 60 of the
children from our program up to a weeklong summer camp, and the kids bunk
together. And many of the children discuss HIV during the course of the week
and will tell us, or tell their peers at camp, that they know or ask us
specifically to tell them what's going on. But their families are not always
prepared to openly discuss this diagnosis. We work very hard with the
families, starting at an early age of the child, to encourage them to
communicate with their children and to openly discuss HIV at a point when they
are ready. Unfortunately many of the families aren't ready until well after
we feel the children already know and really are openly asking to learn this
information.

Dr. NICHOLAS: Many times the parents are so vested in the children not
knowing the diagnosis that they come up with elaborate lies. We have a very
bright 12-year-old who was coming into our clinic up at Incarnation Children's
Center and he had complete control of his disease because he was on strong
medications, the adherence was good, but the parents would not talk to him at
all about the fact that he had this disease or that both of them did. They
were just scared to death that somebody would find out. And so it turned out
that he had some rash that he had to go to the dermatologist for, and they
were telling him that he was coming every month, taking all these medications,
having his blood drawn because of this skin rash. Well, he was a very bright
kid. We tried very hard to get the parents to allow him to go to summer camp.
The parents wouldn't want it. They didn't want it. They were afraid that he
would go and talk to other children and figure out his diagnosis.

BOGAEV: What's your responsibility as doctors in disclosing the status of
these kids' HIV when the parents haven't told them?

Dr. NICHOLAS: I think that's a terrific question and a difficult one. I
think our role is to support parental decisions, and what we try to do is
encourage parents to develop a plan about how they're going to begin
introducing the topic. What we normally say is begin answering questions, and
if you're afraid that there's too much specificity, simply give some reason
for why you're going to the doctor all the time. With younger children you
don't have to give all the details, but children need to be told something.
So you might simply say you've got an infection of some sort, or you've got a
blood problem.

But as children get older--and usually by eight or nine if you're
developmentally normal, you can begin to kind of keep a secret--then we
encourage parents to begin telling what the real diagnosis is. But oftentimes
parents will not listen to us. They're afraid. They don't really want to
talk about this. And our role is not to undermine the parents and go around
behind their backs and tell the children. I know colleagues who think that
that is our role, but I think that would simply undermine our relationship
with the family. And you can imagine a parent probably wouldn't come back to
us for care if we did that.

Dr. ABRAMS: I think that highlights one of the important issues about being a
pediatrician because you can end up in a relationship, in a situation, where
you are torn between your relationship with the parent and your relationship
with the child. And what we like to do is to take an approach, we take care
of the family. And though I'm not the physician for the parent, we're
treating the family as a unit and have to make decisions on what's best for
the family overall.

BOGAEV: My guests are doctors Elaine Abrams and Stephen Nicholas of Harlem
Hospital Center. After this break we'll continue our conversation about
babies born with HIV who are now living with the virus into their teens. This
is FRESH AIR.

(Soundbite of music)

BOGAEV: If you're just joining us, my guests are doctors Elaine Abrams and
Stephen Nicholas. They work at Harlem Hospital Center, where they treated the
so-called `border babies,' babies who had HIV and were left to live at the
hospital by mothers who were either too sick to care for them or were
drug-addicted. Many of the children were eventually taken in by foster
parents.

It must have been quite a challenge for these foster parents who did take
these children in and who might have expected that they would be caring for
babies who were dying. And then they ended up caring long-term for children
with really complex medical and psychological needs. How well did the
children do in foster care?

Dr. NICHOLAS: Well, I think many of children have done quite well, and, of
course, many of them have been adopted. But I think many of these kids have
got really severe behavioral problems, and so what that's led to is some of
the adoptive parents, some of the foster parents, some of the biologic parents
have simply run out of steam. Many of the original foster parents really did
the heroic thing at a time that there was nothing to offer these kids. All
right, we started the story at a time there was no hope. It was very
apocalyptic. We thought all the children were going to die. It seemed
unlikely the children would even get foster homes or adoptive care. And then
along came treatment. It seemed unlikely that we'd have good treatments, but
here we've got them.

So when you look back on this story you could say, well, this is such a happy
story, and much of it is. Who could argue with the fact that we've now got
kids that we've known since infancy that are going out on dates, you know.
They're having to grapple with sexuality, and that's complicated, but these
are wonderful kids doing a lot of wonderful things, and they're living and
alive. And yet the ironic twist at the end of the story is that there's a
subset who are now being rejected by their families. There's a subset that
are being kicked out of school. And because they're so complicated and
they've got such great needs, both mentally as well as health-related, there's
nowhere for them to go.

Dr. ABRAMS: What's turned out to be quite interesting is because these
children have had a medical home for their entire lives, we as providers often
find ourselves as providing an ongoing home or safe haven for these children
when things get rough at school, when things get rough at home. And as a
program, and I think this is mirrored throughout the country, we're finding
that we're really having to grow our mental health services and pay more
attention to issues around school failure, around delinquency, around helping
these children to really cope with their becoming older, entering adulthood,
taking responsibility for their health and their behavior while they're not
getting the kind of support that one might hope for in their households.

BOGAEV: Well, by now many of these kids are reaching sexual maturity, or at
least adolescence, and I imagine--are they coming to you, Dr. Abrams, or Dr.
Nicholas, for advice and concern? 'Cause you have this ongoing relationship
with them.

Dr. ABRAMS: Well...

Dr. NICHOLAS: They go to Dr. Abrams.

Dr. ABRAMS: I'm not sure advice is quite the right word. I mean, there have
now been many young girls who have perinatal infection, who were born with the
disease who have now had their own babies. And many of our young people are
sexually active. And I think they're grappling with what this all means. We
have one young boy who's 13 who really is troubled by what confronts him. He
wants to be a father when he grows up, but he knows that if he has unprotected
sex that he might infect the woman the same way his father did to his mother,
and that's how he got infected. So these children are really trying very hard
to handle all of this while at the same time they're adolescents. And that's,
you know, a difficult time in the best of all situations.

BOGAEV: So it sounds as if there are still very wide cracks in the care for
these children and in the support that they need--counseling, education, also
mental health facilities for the ones with severe mental illness and
depression.

Dr. NICHOLAS: Very much. Mental health care for poor kids in New York is
extremely underfunded anyway, baseline, but when you've got kids with the
severity, complexity of need that children with HIV have got, there are very
extremely limited services. And if they're not able to be maintained in a
home setting and they've got to go to a residential setting, which some do,
what we've found is that the mental health facilities are not prepared to deal
with the chronic care needs; in other words, the illness-related: the
medications, some of the other problems that kids have got that are medical.
The chronic care facilities, on the other hand, can take care of the medical
needs, but they can't do the mental health. And then, of course, you get into
issues in any sort of a group setting with adolescents of sexuality. And what
do you do with a sexually acting out HIV-infected child? That is a real
dilemma.

Dr. ABRAMS: I want to point out, however, that we're focusing on a part of
the population that many of these aging children are in homes and are in homes
that are trying very hard to work with them and to support them as they age.
And that, you know, in partnership our program at Harlem is trying to work
with families to enhance their coping skills and enable them to support these
children as they get older and as they grapple with issues of sexuality and
secondary transmission and to help them if they children do have mental health
needs, which are often quite intense, to access those services because there's
a great stigma around mental health issues in our community and in many
impoverished communities. And while HIV used to be the big taboo word, now
trying to send somebody to see a psychiatrist is equally as difficult. And
that it's taking a lot of discussion to bring families to the point where
they're accepting of these services and interested in obtaining them.

BOGAEV: I'm curious if you both have children and, if they are teen-agers,
whether you're showering them with lectures about abstinence and even condoms.

Dr. NICHOLAS: Well, it's a little bit like the question I get asked years ago
when we opened up Incarnation Children's Center, and the question--there was a
guy from the AIDS Institute who was very anti-Catholic. And here we're
working with the nuns. And he said, `What is going to be your policy on
condoms?' And I said, `Well, our children, all of whom are going to be under
five years of age, cannot use them.' I've got four children, 12, 11, 10 and
six. So I'll let you know how it goes.

BOGAEV: Dr. Abrams.

Dr. ABRAMS: I have older children who've been through most of adolescence,
though I don't believe it ever ends, and two 11-year-olds. And we're
beginning the discussions. Actually last night I had the boys looking at some
work we were doing with the kids at the hospital around puberty and sort of
testing out some of the materials. So I think it's going to be an ongoing
dialogue.

BOGAEV: Dr. Abrams, it sounds as if you've developed some close relationships
with these kids as they've gotten older. Could you just leave us with a story
about a child that you have taken into your heart or into your family?

Dr. ABRAMS: Well, I'll tell you a story about a young boy who both Dr.
Nicholas and I know from when he was a baby. And he was one of our earliest
children who was in the hospital and needed--had severe diarrhea and needed a
central line put in to give him hydration, which was very new at Harlem
Hospital at that point in time. And he was just the littlest thing, maybe
five pounds. And he actually went home with his mom, but she developed severe
HIV and she died and he lived with assorted family members. And he comes into
my office regularly. He's a very big guy now. He's close to 200 pounds and
six feet tall. And he comes into my office and he sits down and he says,
`What was I like as a baby? Nobody can tell me in my family what I was like
when I was a little baby. What did I look like?' And I'm so deeply touched
by this young man who just is reaching out for a little bit of his history and
of his past. And how we as a medical group, as people who've been in his life
for the last 15, 16 years, are his only contact with his early childhood.

BOGAEV: Dr. Nicholas, Dr. Abrams, I want to thank you so much for talking
with me on FRESH AIR today.

Dr. NICHOLAS: Thank you, Barbara.

Dr. ABRAMS: Thank you.

BOGAEV: Dr. Elaine Abrams is director of the Family Care Center at Harlem
Hospital Center. And Dr. Stephen Nicholas is the head of pediatrics there.

Coming up, a review of a new CD from singer and guitarist Corey Harris.
This is FRESH AIR.

(Soundbite of music)

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Review: Corey Harris' latest album, "Downhome Sophisticate"
BARBARA BOGAEV, host:

Blues musician Corey Harris started recording during a period in the '90s
when young blues artists were sought after. But his revival of the blues
included his own mix of contemporary sounds. Critic Milo Miles has a review
of the latest album from Corey Harris, called "Downhome Sophisticate."

(Soundbite of music)

Mr. COREY HARRIS: (Singing) Don't let the devil ride. Don't let the devil
ride, yeah. If you let him ride, he's gonna want your hide. Don't let him
ride.

MILO MILES reporting:

Corey Harris was born in Denver in 1969 but is headquartered in New Orleans.
He began as a solo acoustic guitarist and singer on the street. This was the
perfect image for the young blues player fad, which was pitched as an
alternative to the rising tide of cute and sexy girls and boy groups. Never
mind that some of the young blues types were pretty fashion-plate themselves.

By his second album, 1997's "Fish Ain't Bitin'," Harris passed a basic test
for a performer adapting vintage musical styles. He used "Delta Blues," a New
Orleans bomp, as a vehicle for his very contemporary thoughts on love and
alienation. He didn't force his songs and sensibility to fit some
romanticized dream of old-fashioned music.

Harris worked with expanded backup on his next release, 1999's "Greens From
the Garden," but the album was often vague and lumpy. When in doubt, Harris
would fall back on his solo acoustic mode. Then Harris hooked up with his
ideal song collaborator, guitarist Jamal Millner, and everything snapped into
place for "Downhome Sophisticate."

(Soundbite of "Sista Rose")

Mr. HARRIS and Backup Singer: (Singing) Sista Rose, which one of them can
you believe, ooh? Which one of them will please you ...(unintelligible) tease
you, people do. Sista Rose, which one of them can you believe, ooh? Which
one of them will please you ...(unintelligible) tease you, people do. So you
can't remember what your mama told you, Sista Rose. You never listen when
your mama scold you, Sista Rose. Lie abed and never get no Sunday, Sista
Rose. ...(Unintelligible) Sista Rose.

MILES: Harris has obvious predecessors, like the venerable eclectic performer
Taj Mahal. And he has like-minded peers, such as trumpeter Olu Dara, who
plays on the track "Sista Rose." But by hooking up with Millner, drummer
Johnnie Gilmore and bassist Vic Brown, Harris has formed the most fluent,
fascinating blues-based group in a long time. The 5x5 Band unifies the many
modes Harris hears for his music, including calypso, reggae and West African
soukous.

Harris writes wry dance tunes, reflections on proud or venal gals and what
might be called tales of amiable estrangement from society. But the sturdy
melodies and non-stop momentum of the 5x5 Band and friends is what makes
"Downhome Sophisticate" stick fast.

(Soundbite of music)

Mr. HARRIS: Na, na, na-na-na-na, na. Ooh, oh-whoa-whoa-oh. Frenchie's(ph)
always looking for her baby. She gonna get it any way that she can. Steppin'
downtown in a full-length mink coat, you know she got a master plan. See a
puddle, she gonna jump right in. See a crash, she gonna slip and fall. She a
survivor, don't worry 'bout nothing. You better believe it 'cause that ain't
all. Listen here. They got you thinking like you...

MILES: The record uses much careful studio layering, so I wondered how Harris
would deliver the material in concert. At a recent show at The House of Blues
in Cambridge, the 5x5 Band delivered a generous performance before a cheery
but sedate crowd. Harris and his group excelled on numbers with hybrid
styles, like "Money on My Mind" and "Santoro," that include strangely
psychedelic passages, pure blues wails and spoken interludes that reflected
both rap and talking blues.

For such a strong outfit, the 5x5 Band was self-effacing. The spotlight
remained on Harris' rather sweet and shy personality. His encores were both
intimate solo works that showed Harris now returns to the keening slide guitar
of the Delta, not because he is tentative about his other styles, but to
affirm that the blues led him to all the others.

BOGAEV: Milo Miles is a music critic living in Cambridge. He reviewed
"Downhome Sophisticate" from Corey Harris.

(Soundbite of music)

Mr. HARRIS: (Singing) Down-home sophisticate, down-home sophisticate...

(Credits)

BOGAEV: For Terry Gross, I'm Barbara Bogaev.

(Soundbite of music)

Mr. HARRIS: (Singing) ...(Unintelligible) monkey, get your freak on. You
won't believe what they puttin' down. ...(Unintelligible) monkey, get your
freak on.

Backup Singer: That's it. That's it.

Mr. HARRIS: (Singing) You won't believe what they puttin' down. Down-home
sophisticate, down-home sophisticate.

Backup Singer: And take your educated guess.

Mr. HARRIS: (Singing) ...(Unintelligible) monkey, get your freak on.

Backup Singer: ...(Unintelligible) monkey, y'all.

Mr. HARRIS: (Singing) You won't believe what they puttin' down.

Backup Singer: ...(Unintelligible).

Mr. HARRIS: (Singing) ...(Unintelligible) monkey, get your freak on.

Backup Singer: ...(Unintelligible) monkey, y'all.

Mr. HARRIS: (Singing) You won't believe what they puttin' down. Down-home
sophisticate. Down-home sophisticate.

Backup Singer: And take your educated guess.

Mr. HARRIS: (Singing) Down-home sophisticate...
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