Episode Transcript
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Speaker 1 (00:16):
Welcome to Pdheart Pediatric Cardiology Today. My name is doctor
Robert Pass and I'm the host of this podcast. I
am Professor of Pediatrics at the Icon School of Medicine
at Mount SINAI thank you for joining me for this
three hundred and forty first episode of the podcast. I
hope everybody enjoyed last week's episode, in which we took
a trip back in time to hear what it was
like to be a cardiology fellow under the leadership of
(00:37):
doctor Alexander Natis. We spoke with doctor Thomas Hougan, doctor
Patty Romp, doctor Barry Keane, and doctor ROBERTA.
Speaker 2 (00:45):
Williams.
Speaker 1 (00:45):
And for those of you interested in the history of
pediatric cardiology, I'd certainly recommend you tech to listen to
last week's episode three hundred and forty. As I say
most weeks, if you'd like to get in touch with me,
my email is easy to remember. It's p D Heart
at gmail dot com. This week we have an unusual episode.
Once again, we're going to speak with one of the
many really good people in our world who has established
(01:09):
her own charitable organization called Patty's Project. Miss Caleb Billington
is a neonatal intensive care unit nurse from Northern California
who took our first trip to the African nation of
Uganda in twenty fifteen to volunteer at an NGO and
then fell in love with the country and its people.
I'm not going to short circuit Miss Billington's wonderful story,
(01:31):
as it is inspirational, but suffice it to say that
on a shoestring budget, she has been able ultimately to
create a charity that has resulted in sysurgical treatment of
many children in a country where the medical resources are
so very limited and where any form of congenal heart
disease can mean a death sentence. We're all aware of
many such countries where children die because of resources, but
(01:54):
Miss Billington wanted to do something about it, creating this
organization with a mission rooted in honest, integrity and community.
Miss Billington will tell her own story to us, and
we'll also have Professor Krishna Kumar of the Amrita Institute
of India, whose Wonderful program has partnered with Miss Billington
to provide vital cardiac services to children in Uganda. Without
(02:17):
me giving away the whole story, let's go straight into
our conversation with Miss Billington and also Professor Kumar.
Speaker 3 (02:23):
Okay, I'm here now with Miss Caleb Billington and doctor
Krishna Kumar. Guys, I really appreciate your making time to
speak with us this week on PDHART.
Speaker 4 (02:32):
Thanks Rob, It's an absolute pleasure to be with you
once again.
Speaker 2 (02:37):
Thank you.
Speaker 5 (02:38):
Yeah, thank you so much for having me. I'm really honored.
Speaker 2 (02:40):
Thank you very much, Miss Billington.
Speaker 3 (02:42):
Great pleasure to meet you, of course, always great to
see my buddy KK, one of my dearest friends. Miss Billington.
Why don't we start with you. I was just wondering
if maybe you could share with the audience a little
bit about your background. Where did you grow up, what
did you study in school? How did you choose to
become a nurse and pediatric neonatal critical care.
Speaker 5 (03:01):
Yeah.
Speaker 6 (03:02):
I grew up in central Wisconsin in a very small town,
and I think from birth, I've always been a very
empathetic and caring child, and so nursing kind of made
sense for me.
Speaker 5 (03:16):
And then when I was in.
Speaker 6 (03:17):
High school, I actually got diagnosed with cancer, and I
think the nurses really set the foundation for me wanting
to specifically go into pediatrics in neonatology, and so when
I graduated high school, I went to.
Speaker 5 (03:34):
A private school that was known for nursing.
Speaker 6 (03:38):
And then after that I was lucky enough to get
a job in a pediatric and neonatal icy floatpool, and
so I worked in a surgical, medical, cardiac and neonatal
ICU flotpool and that really gave me such a strong
foundation that here am thirteen years later, still doing the
same thing.
Speaker 3 (03:57):
So wow, so inspired by the care tank who took
care of you and made you well, you decided to
pursue the same career. So, Miss Bellington, really inspiring story.
I'm wondering, how did you find yourself in Uganda working
in an ngo. Can you tell us the story of
how you first went there and what your experiences were
in that land.
Speaker 6 (04:17):
Yeah, So about three years into my nursing career, I
decided that I wanted to do a volunteer opportunity somewhere,
and I really didn't have an idea where or what,
but I knew I wanted to use my nursing skills somewhere,
and so I kind of haphazardly landed in Uganda. I
knew nothing about the country, the people anything. But my
(04:39):
first trip there was actually to be a head nurse
at an orphanage, and so I spent about four months
there and I knew when I left that.
Speaker 5 (04:49):
I wanted to come back.
Speaker 6 (04:51):
I had fallen in love with the people and the culture,
and so when I came back in twenty fifteen, I
I ended up working at a non government operated pediatric
hospital in Jinja and really loved the work that I
did there and it really has ended up changing my
life in any ways.
Speaker 3 (05:12):
I see very interesting, you know. I of course went
to your website, and I will link the website in
the show notes this week. But I was reading about
a particular patient that you met, a boy named Wavamuno Patrick,
and I'm wondering how you met him and if you
might be able to share a little bit of his
story with us in the audience.
Speaker 6 (05:34):
Happily, so I met Patrick one day while I was working.
I actually was working that day in the general ward.
The hospital had a three different wards, and he was
brought in quite sick, quite limp, and rushed to the
emergency ward. And I didn't get an opportunity to meet
him that day because at the time I think I
(05:55):
had about ten blood transfusions going and forty outpatients. But
the next day I was assigned to the emergency ward
and I looked up from my desk and I could
see Patrick sitting in the corner and he was a
telltale cardiac kid. If you looked up cardiac symptomology in
a book.
Speaker 5 (06:16):
You would see Patrick's face.
Speaker 6 (06:17):
He was sitting in a tripod position, his lips were purple,
and he had club nails.
Speaker 5 (06:25):
And I, even though I did cardiac, I see you.
Speaker 6 (06:29):
I had never seen a child with that strong of symptoms,
and so I very eagerly asked the doctor during rounds, like,
don't you think that kid has a heart defect? And
he said, yeah, we suspect he does, we're not sure
what kind. And I was kind of confused, like why
they wouldn't know what cardiac issue he had. And now
(06:53):
I obviously know a lot more, But at the time,
the only place to get an echo was in Kompala,
which was about four hours hours away, and so I
very much pushed to have him go get an echo,
and the results came back that he had tetrology at flow.
At the time, I was shocked. I had never seen
(07:14):
a two and he's about two and a half. At
the time, I had never seen a child that old
with unrepaired tetrology. Obviously, I was a nurse in America,
and kids in America get their hearts repaired, you know,
before the first year of life, usually, especially if they're symptomatic,
and so I was shocked, but I was also kind
(07:35):
of eager now that we knew he had tetrology, like,
let's get him some help. And so I was like, Okay, well,
where can we go get him help? And I'll never
forget The doctors kind of solemnly looked at me and said,
you know, we're really sorry. We should have told you
this before, but Patrick's not going to get surgery.
Speaker 5 (07:55):
He's not going to get the help he actually needs.
Speaker 6 (07:57):
And I was heartbroken and confused, and it just didn't
sit well with me, and so I couldn't really eat,
I couldn't really sleep. I just kept thinking about him,
and over the next couple of weeks, I really developed
such a strong relationship with Patrick in a way that
I don't know I can really describe, other than I
(08:20):
just fell in love with him. And I couldn't go
back to America and accept that that was going to
be his fate. So I spent the next eleven months
trying to get him heart surgery anywhere I could.
Speaker 5 (08:30):
At the time, I was a bit naive.
Speaker 6 (08:32):
I was about twenty five, and I just assumed that
the only choice would be America because I was American,
and so I would call email every hospital I could
think of, every organization I could think of, and I
got a lot of no's. I'm sure people thought I
was crazy, but I ended up finding a hospital in
(08:54):
Kentucky that was willing to do the surgery, and so
I brought Patrick to America and at the beginning of
twenty eighteen. Unfortunately, once we got to America, we found
out Patrick's ejection fraction was dangerously low and it never
(09:17):
really got better, and eventually they told me that there
was nothing they could do. So I decided to take
Patrick outside of the hospital and he died a few
days later, and it really just changed the trajectory of
my life. While he was dying, I promised him that
(09:39):
I would one take care of his family and to
make sure that his story meant something. At the time,
I didn't really know what that would mean, but now
obviously it's clear. Consequently, when I went to Patrick's funeral.
I took his body back to Uganda for his funeral
and I met his I had already met sister, but
(10:00):
I saw his sister at the funeral and she was
breathing funny, and I just knew in my heart that
it wasn't just the heat or the exhaustion of the day.
And it turns out she also had a heart defect.
Speaker 7 (10:14):
Wow.
Speaker 6 (10:14):
And so I brought her to the same hospital in
Kentucky that was supposed to do Patrick's surgery, and they
ended up doing her repair. And then when I went
back to check up on her and build Patrick's family
a house, I met another boy who had a heart defect.
And at that point it became very obvious to me
that this is something.
Speaker 5 (10:35):
That I needed to do.
Speaker 6 (10:36):
This was a call that I needed to answer, and
so I decided to start Patty's Project in Patrick's honor.
And so we've been operating now for five years and
have done fourteen heart surgeries.
Speaker 2 (10:50):
Wow. Quite a remarkable story.
Speaker 3 (10:52):
How old was Patrick when he passed?
Speaker 6 (10:54):
He was one month shy of his fourth birthday.
Speaker 3 (10:57):
I see, I say, well, that's a really inspiring story.
Look how you immediately made good on your promise by
saving the life of his sister, not just within the
same year as his passing. Really a remarkable story. How
have you gotten funding for this? I mean, we know
you're a nurse. I'm sure you make a very nice salary,
(11:19):
but not enough to fund fourteen children having open heart surgery.
Speaker 2 (11:24):
So how have you managed this?
Speaker 5 (11:27):
You know, fundraising is always a challenge.
Speaker 6 (11:30):
I am the primary fundraiser, and so a lot of
word of mouth, telling Patrick's story and connecting with people.
But it's definitely a challenge. I come from a very
humble background. Both my parents worked two jobs while I
was growing up, and I worked two jobs to pay
for school. So but I also am surrounded with a
(11:52):
good community of people. And you know, I always say
five dollars donations have built Patty's project.
Speaker 5 (12:00):
And while we would love bigger.
Speaker 6 (12:03):
And more reoccurring donations, I continue to just kind of
hustle every year to do what I can and do
as many surgeries as I can.
Speaker 2 (12:12):
Oh.
Speaker 3 (12:12):
Well, it's really quite remarkable. Well for those in the audience,
because this is an audio only podcast, I'm actually speaking
with Ms Billington and doctor Kumar. They're both sitting at
the Amrita Hospital in Coach in India.
Speaker 2 (12:25):
I'm still amazed.
Speaker 3 (12:26):
That we can do this with the amazing aspects of technology.
When I think back to when KK and I were
fellows and we're going to buy pieces of software for
our computers that we can do this. You know, I
was wondering, how did you find yourself in Amrita. How
did you find doctor Kumar and his group there and
how did you partner with him? I mean, you started
(12:48):
obviously taking children to America because that's where you're from.
But how did you have the idea that doctor Kumar
and his team at Amrita might be a good match
for your project.
Speaker 8 (12:59):
Yeah?
Speaker 6 (13:00):
I actually found I connected with doctor Kumar from someone
that I found on Instagram, which sounds kind of funny,
but here we are.
Speaker 5 (13:10):
I knew that just based on the kind.
Speaker 6 (13:14):
Of American insurance model and how hard I had to
fight to get Patrick to America. Having a hospital donate
a surgery, it just wasn't sustainable long term, and so
I had to look for other options. And so when
I got connected with this person and they told me
(13:34):
about doctor Kumar in Amrita Hospital, I kind of thought
it was too good to be true. So the first year,
I was actually quite skeptical, and I am just so
grateful that we did get connected because it has been
the biggest blessing for not only our organization, but for
children in Uganda. I can't say enough good things about
(13:58):
this program and this hot spit on and I'm so
so grateful.
Speaker 3 (14:02):
It's wonderful to hear doctor Kumar. Maybe you could share
with us how you met Miss Billington. What you think
Amrita has been able to offer these children that might
not be attainable elsewhere. And I'm wondering, you know you're
taking care of all these children. Do you have a
partner in Uganda who follow up these kids after you
(14:23):
send them home?
Speaker 8 (14:23):
Yeah? So I'm I think kay Kayla reached out to me.
So that's all I remember. I don't know how that happens.
Speaker 4 (14:31):
So Kayla has told you that she's got connected through Instadgram.
Speaker 8 (14:34):
I had no idea, So she reached out to me.
Speaker 4 (14:38):
And we do have people reaching out to us from
a number of Philanthrops reach out to us from Uganda
wanting to send children to us. So what we've been
able to offer, I think we've been able to offer
a reasonable quality of care at a fraction of the
cost of what it is in the United States. That's
for sure a very, very useful service. But what I
(15:00):
think is unique is the fact that we understand these patients.
Maybe for example, the example that Kayla gave about Patrick himself,
is what we've started to see now in advanced tetrologies
that are unrepaired, you have very severe ventric l a
dysfunction at times. What's interesting is that this is reversible.
So what we do now is to temporize these children
(15:23):
with a balloon procedure or our right ventri clout flow
tracts stinting and the ventricle most of the time to recover,
and then we undertake guidiac surgery, so we do it
in a staged fashion.
Speaker 8 (15:36):
So that's something that we've.
Speaker 4 (15:37):
Understood about this population because we've had some experience in India.
Although it's become less and less we don't get older
patients as much as used to get earlier, but we've
understood this complex population and also the older children that
are unrepaired chants that have promarly hypertension. When do you
sort of intervene, how do you decide that's been a bit.
(15:58):
We've had a rich experience in handling those sort of
children and that has allowed us to become a little
more confident about helping out the children from Uganda. Now,
what the question of continuity of care. We have links
in Uganda. I have got two trainees who have been
trained here, the senior pediatric cardiologists spent a couple of
(16:20):
months in training in the catalog here. I'm also well
connected with a whole number of other cardiologists who attend
some of.
Speaker 8 (16:29):
The virtual teaching sessions that I do.
Speaker 4 (16:32):
And also, you know, through the Romantic Heart Disease Network,
we've been connected. So there is a fairly good level
of expertise in Uganda.
Speaker 8 (16:42):
You'll be surprised.
Speaker 4 (16:43):
What's missing is surgery, and what's missing is intensive care
and a good, well organized system. But there is a
reasonable pediatric cardiology expertise there and they are frequently communicating
with us and chatting on WhatsApp. So we do get feedback,
although I honestly think it should be a little better
than what I would I mean, it could be a
lot better than what we're getting right now, but there
(17:05):
is reasonable feedback.
Speaker 3 (17:07):
Interesting, very interesting, you know, KK, we've previously highlighted the
wonderful work at m Rita that you and your colleagues
have done for the kids of coaching in southern India
in general. I was wondering, how have you generated the
extra capacity to care for children from you, Ganza. I mean,
I've visited your center. You guys are busting at the
(17:27):
seams with patients. How do you add an extra couple
of cases every year with the very large number that
you already are taken care of.
Speaker 4 (17:36):
Quite honestly, I'm not so sure how we do that
in the sense that we don't say no.
Speaker 8 (17:41):
We've learned, we've sort.
Speaker 4 (17:42):
Of tried very hard to not turn away any baby
who comes to us. We turn things around very fast,
so median mechanical ventilation duration is after cadaccisity all forms
of tenas, so we are able to move the ten
bedded ICU. We do eight hundred surgeries anubly.
Speaker 8 (18:04):
Wow. So there is a very rapid.
Speaker 4 (18:07):
Turnover that has been facilitated by some remarkable practices with
our anesthesia and intensive care that just allows us to
move patients out quickly enough that we can manage a
very good turnover. So we approximately do eight hundred in
the OAR and maybe another six fifteen in the cat
lab annually.
Speaker 8 (18:27):
So that's probably why we do it. But I guess there's.
Speaker 4 (18:31):
Going to be a time when we're going to just
say we can't handle anymore.
Speaker 8 (18:35):
But at the point we are able to just about manage.
Speaker 3 (18:38):
Yeah, well really quite quite something. I'm going to ask
you now a controversial question.
Speaker 2 (18:44):
You know, Miss Billington and doctor Kumar.
Speaker 3 (18:47):
Some might suggest that your efforts, though obviously extraordinary, are
unfortunately only helping a small number of kids in Uganda.
Are you aware of efforts either by your group or
others to start the process of training professionals in Uganza.
It sounds like KK, you've already done that to some
degree to help manage some of the more simple common leasions.
(19:09):
It sounds from what you were saying, KK, that a
lot of it had to do with surgical expertise as
well as critical care.
Speaker 2 (19:17):
I know that.
Speaker 3 (19:18):
I think the team from Children's National right, don't they
go to Uganza or they have in the past.
Speaker 4 (19:23):
So I've been in so when Craig Craig was in
craig'sable was in Children's National until very recently, so he
got in touch with us and I think we did
about forty babies from Uganda which he had identified, so
we were partnering with them. I've worked very consciously to
build capacity in Uganda. So we've trained one intensivist who
(19:46):
spent a year with us, is outstanding intensivists.
Speaker 8 (19:49):
Other than Moses. And then we've trained two cardiologists.
Speaker 4 (19:54):
But looks like you know, it's not just training a
few people that can start a center. You need much
more than that. I mean, you need to have a
very good infrastructure, you need to have a team, and
most importantly, you need to have some good surgery so
that something that hasn't seemed doesn't seem to have happened
to that level. I mean perhaps there is some basic
(20:14):
care that is available there but hasn't really happened to
that level. We continue to train as much as I can.
I do a fair amount of virtual teaching.
Speaker 8 (20:24):
I run a.
Speaker 4 (20:26):
Virtual session with a case example every month or so,
and we try and get them on board. Yes, it's
a question that haven't probably answered to your satisfaction, that
we probably could do a lot more to train. There's
just a desperate need to build capacity in all of Africa,
and there are no easy solutions right now.
Speaker 3 (20:48):
Yeah, yeah, Miss Billington, I'm wondering, as an experienced critical
care nurse, do have you done any teaching sessions back
in Yuganza since you're there a fair bit.
Speaker 6 (20:57):
Yeah, when I worked at the non government operated children's hospital, I.
Speaker 5 (21:02):
Did a fair amount of teaching.
Speaker 6 (21:04):
I think the biggest issue I have seen is just
lack of supplies. I think during the pandemic it came
to light that there was like a maybe a total
of ten true ICU beds in the whole country, and
lack of ventilators, lack of supplies, and so I think
(21:26):
if you ask nurses in Uganda, they're eager to learn
it's just a matter of limitations in supplies, which I
think speaks to doctor Kumar's point about infrastructure. You need
to really not only train the doctors, but have a
good infrastructure around that.
Speaker 5 (21:43):
And I unfortunately haven't seen it yet.
Speaker 6 (21:46):
I'm always hopeful that someday Uganda will get there, But
for right now, bringing children to India is our.
Speaker 5 (21:56):
Best option, and it's worked out really, really.
Speaker 3 (21:59):
Well well, no doubt, because you're with the very best
sitting at that table, that's for sure.
Speaker 6 (22:05):
I'm sure you're aware of that he's a very humble man,
but the work he does is really extraordinary and I
feel really honored to even know him and just be
around the team here at Amrita, because they really are
very inspirational.
Speaker 3 (22:19):
No question, he was inspirational before he did this. Could
you imagine now it's really a remarkable individual trying to
embarrass KK here as we finish it up, Well, you know,
I think that it's really wonderful that we can share
this story this week on the podcast because I just
think it's a wonderful, inspiring tale of what just one
person partnering with a wonderful organization like Amrita can do
(22:42):
to save the lives of children with congenital heart disease,
the most common, most common congenital lesion of course, that
affects birth defect affecting patients. As we're closing out our
brief conversation, I'm wondering if MS Billington, if you could
share with the audience how people might be who might
be inclined could make a donation or support your effort,
(23:05):
and KK similarly, is there a mechanism for people to
support your efforts in at Amrita. So why don't we
start with Miss Billington.
Speaker 6 (23:14):
Yeah, just to make one other point real quickly about
looking at this as a small number of children that
we're helping. Obviously, eight to sixteen thousand children are born,
and you've gone to every year with heart defects, and
I'm only able to bring for at this point. Of course,
with more funding, I would love to bring more. But
what I was talking to doctor Kumar about is sure,
(23:36):
when you look at those numbers, it looks like you're
barely scratching the surface, you're not really making a difference.
But when you get to see those fourteen kids and
just see how much you've changed their lives and given
their family hope and given everyone in their community hope,
it really really is what drives me to keep going.
And so with that, if people would like to donate,
(23:58):
my website is the easiest way to do it. It's
www dot pattisproject dot org. It tells the story of Patrick,
it shows some of our success cases here at I'm Rita.
Speaker 5 (24:09):
And there's a donate link there.
Speaker 3 (24:13):
So thank you very much, thank you, and again I'll
put a link to that in the show notes for
those of you who are interested in KK What about
if anyone were interested in supporting your efforts at Amrita.
Speaker 4 (24:24):
So, as of now, there are no good mechanisms of
that allow fun transfer from the United States to our program.
There are regulatory issues. So the best way is to
help Kayla and and and support our efforts. And that
would because what she's done is inspirational. I mean, I've
been We've all been so inspired and touched by the
(24:48):
efforts and and and this just you know, the compassion
that you see on display, It just rubs onto all
of us and leaves us really in awe.
Speaker 8 (24:59):
Of what she's been doing. It's amazing. It's just herculean.
Speaker 4 (25:05):
I mean, to fly from the United States to go
to Uganda, to pick up those babies, to identify them,
get in touch with us, go through all the Hazzle's
book that tickets, bring them over, take care of them,
and then put them back. I don't think there's anyone
else doing this. Yeah, it's just amazing.
Speaker 3 (25:22):
Well, let me speak for all the listeners of this podcast.
I think we're all similarly impressed and inspired by both
of you.
Speaker 2 (25:31):
Really a great honor on my part to.
Speaker 3 (25:33):
Be able to speak with both of you and to
highlight this unbelievable program. Mss Billington, thank you very much
for sharing your story with us this week. We're all
very inspired, and of course, KK you've been on a
few times and we're all always inspired by all of
your many achievements at Amrita really in a very special
place made by you.
Speaker 5 (25:54):
Thank you so much.
Speaker 8 (25:56):
Thanks Rob, stay Well.
Speaker 2 (25:57):
Thank you well.
Speaker 1 (25:58):
I really don't have much toy. I'm sure you're all
inspired by the moving tale of Patrick and Miss Billington,
who has moved heaven and earth to fulfill the promise
she made to little Patrick, and has so far worked
to save the lives of fourteen different children in Uganda,
offering hope and inspiration to the families of these children
and others in their network. I'm also sure that you
(26:20):
are similarly inspired by doctor Kumar and his wonderful team's
efforts for these children at Amrita. Off air, Doctor Kumar
wanted to make special note of the outstanding work of
the surgeons at Amrita, without whom none of this would
be possible. Once more, I will leave the link to
Patty's project in the show notes for those who might
(26:40):
be interested potentially supporting her efforts and I'd like to
thank both Caleb Billington and Professor Krishna Kumar for coming
on the show this week to inspire us all. To
conclude this three hundred and forty first episode of ped
Hart Pediatric Cardiology, Today we end with the bravura aria
from Rossini's Lacherentella entitled naqui a lafano, which really allows
(27:04):
the mesa soprano to show off her vocal chops with
coloratura all over her range. And today we hear the
up and coming British mezzo soprano Anita Montserrat, who has
studied in many important institutions in the UK and has
finals in many important singing competitions in Europe. I am
certain she will have a wonderful career ahead. Thank you
(27:24):
so much for joining me for the podcast this week,
and thanks to Ms Billington and doctor Kumar. I hope
all have a good week ahead.
Speaker 3 (28:00):
M M.
Speaker 7 (28:08):
Sol re read don't be loll sort nor sor really.
Speaker 5 (28:41):
Jo bed.
Speaker 9 (29:07):
No sort of.
Speaker 7 (29:11):
No sort come joy.
Speaker 8 (29:25):
No no no no ry t.
Speaker 7 (29:29):
Very get to read not very gay to daylo crystals
send a crystal.
Speaker 9 (29:40):
See smy.
Speaker 7 (30:10):
Don't you really no stop gods? Look sup? He's talking
(30:53):
at So you're jo.
Speaker 3 (30:59):
Wanted no.
Speaker 7 (31:22):
Stock com what more so not God? You want to
so when you wanted told not cool, not a modicle,
(32:05):
talk about it. You don't want to do what you
want to because really add hapen it.
Speaker 1 (32:22):
So you're telling a.
Speaker 7 (32:26):
Half sold beginning made happen. You don't know when. So
do you tell me everything soldin? Tell me at a
(33:25):
school