Hey everyone, it's me Hallease, endeavoring to persevere as always. If you're new here,
I make videos about my chaotic good life. Subscribe! Follow! Social media! All the things.
My dad actually shouldn’t be alive right now. He is a testament to modern medicine as we know it,
but he is also proof of its flaws.
- For me though, I was a Blue Baby, if anybody knows what that is. Blue Baby is when you’re
born with a small hole in your heart. It’s supposed to close up but it didn’t close up.
My dad was born with a combination of congenital heart defects called Tetralogy of Fallot.
In so few words, when we’re born we have a hole in our heart. It’s actually there
so that while you’re in the womb oxygen can bypass your lungs which aren’t developed yet
and be delivered to your unborn heart and brain.
After you're born, the hole is supposed to close up because it’s not needed anymore but for some
babies it doesn’t. In the case of my dad, it was that plus a combination of other defects.
A valve doesn’t open or close right, and then on top of that an artery is a little too narrow for
some reason. Blue babies get their name because of the lack of oxygen. The blood on one side of
your heart that’s already been infused with it is somehow mixing with the blood on your other
side of your heart that hasn't been infused with oxygen yet. Therefore, you’re never quite
getting enough oxygen in your bloodstream and because of that you look a little blue.
Nowadays, most babies that have any sort of serious heart defect like this,
will get the surgery almost immediately. Nowadays. But back when my father was born however…
- Back in those days, you had to wait 'til the child was big enough to have the surgery. If I
made it to 12, or made to where I was big enough to have it, good. But most of us did not make it.
Yeah the mortality rate of babies that didn’t get the surgery in my dad’s time
is pretty epic. One medical journal I found showed that a 1 year survival rate was around 66% — and
it just gets lower after that. A 49% survival rate of making it to 2 years. And by the time their 20,
it's a 10-15% survival rate. So, the statistics weren't looking good for my dad.
Nevertheless, my grandparents — his parents
endeavored to persevere. Them along with my extended family did their darndest
to keep my dad alive — until he was big enough and old enough to get the surgery.
- My fondest memories were growing up. Just 'cause everybody around me was my cousins. So you know,
you had a lot of people to play with. They would make sure I get to where I would need to be,
then they’d start playing. Or then they’d grab me and take me when they're going
to another place, and then start playing. Because I couldn't do a lot of running and walking.
My mother would have a cousin cook for me. So I ate a full meal every meal.
So, the surgery that my dad got right when he was around 11 or 12 years old was actually pioneered
by a Black man — a few Black men, actually. The first was Dr. Daniel Hale Williams who in 1893
performed the first documented and successful open heart surgery. The second Black man was
Vivien Theodore Thomas, who in the 1940s, about a decade before my dad was born, was doing extensive
research on Blue Baby Syndrome and ended up developing the procedure on how to treat it.
If you ever have time, look more into Vivien Thomas’ career because this dude was literally
categorized and paid as a janitor even though he was doing groundbreaking research — because
racism. Now at this point you’re probably saying, "Hallease this is
interesting at best, at best this is interesting. Why do I care, though?"
Because he's my daddy! And I would not exist without him,
and I love him! Ugh! That's why. Ugh! I'm just kidding. There's another more general reason
why I think this is interesting and you should care. But let me cut back to my dad real quick.
- Well, the first time my mom took me to the doctor there was nothing really they
could do because I was too small. The second time she took me back to him,
he thought she had had another child. And she said, "No, this is the same one I brought you
the first time." I would think the only reason I did make it because they took me down to grandma,
my father's mother, and she and then some old doctor have a lot of old remedies they used on me.
They tell me she used to bake me every morning. Put me in a cheese cloth, fresh pajamas,
lay me in the sun 'til I sweat, and flip me over, change my clothes. She did that every morning to
get the cold. 'Cause I had a real bad cold, to get the cold out. She got that outta me. So,
that really saved my life. I don't know what they gave me. I haven't got a clue. Haven't got a clue.
I shouldn’t have to say this but let me just go ahead and say it so the record
shows that I said it: do not put your child in cheese cloth and leave them out in the sun.
Look at me. Look at me: don't do it. Put the baby down.
The point I'm trying to make with that is that my grandmother couldn’t rely on modern
medicine at the time so she relied on ancestral medicine until modern medicine could take over.
I can’t even begin to imagine how my grandmother must have felt trying to put her trust
in doctors with my dad as a baby. Because, especially during that time, but just in general:
modern medicine doesn't really have the best track record for being, well um,
unbiased and equitable. And, uh well, ethical. Generationally, Black people we
carry around that trauma of modern medicines past grievances and have a frankly warranted distrust.
The most well known example of this is the Tuskegee Syphilis Study. It was just so the
U.S. Health Service could see what happens when people have Syphilis for a long time.
Never mind the fact that by 1940s, it had been confirmed that Penicillin was a very
effective treatment against Syphilis. So, 1940s, Penicillin ... 1973 the study ended.
Or The Puerto Rico Pill Trials. This is one I actually didn't know about. The Puerto Rico Pill
Trials happened in 1955, where women in Puerto Rico were given birth control pills, again,
without informed consent. Keep in mind that birth control was not an FDA approved drug yet. It's
crazy, because I actually saw the dosages they were giving these women of hormonal contraception.
It's waaay higher than what we have now. People with periods who are on hormonal birth control:
y'all know the side effects. And y'all know what happens when your dosage is wrong. Like ...
And I give these examples to say, when I hear Black people talking about their general
mistrust of our healthcare system, I get it. I completely understand. But I also know that it
saved my dad’s life. And of course during this pandemic, even more so, we’re seeing how our
healthcare system and the socioeconomic constructs around it are failing BIPOC people time and
time again. With Black people being almost three times more likely to be hospitalized
due to COVID-19. And almost two times more likely to die from it compared to our white counterparts.
And then the data behind the vaccine rollout isn't any better. We’re way less likely to
get the vaccine. Some of that is yes, again, a general mistrust of our healthcare system,
which is warranted. And also, some of that is just straight up bias.
Like vaccination sites being in more affluent and white areas.
I wanted to share my father’s story with you because he's had to navigate the healthcare system
since birth. And for those of you who don't know, my mother's a nurse. So,
just through osmosis of being the daughter of these two people, I have been given a lot of
knowledge on how to navigate the healthcare system that I think most usually don't get.
Something I remember my mother saying to me constantly before we would step into a
doctor's visit or a doctor's office was “make sure they explain it to you,” “don't be afraid
to ask the doctor questions — that’s why they’re there. They're there to answer your questions.”
I was emboldened at a very young age to approach doctors as civil servants. In the comments below,
I wanna continue the conversation. How do we embolden each other to ask questions and be our
own advocates when navigating the healthcare system? How do we acknowledge the obviously
warranted mistrust, but also simultaneously make sure that we don't miss out on groundbreaking
healthcare and are given access to it? While also somehow combatting disinformation?
I know that’s an absurd question (laughs) to try to answer in the comments,
but it’s the question that I’m asking. Let’s continue the conversation down below.
A big thank you to my patreon producers, patreon.com/hallease
if you’re interested. There you get early access to videos as well as private weekly vlogs from me.
Thank you again so much. If you're new here and you made it this far in the video,
wow! Hi. Please consider liking, sharing, and subscribing. Again,
I’m Hallease, endeavoring to persevere as always. I will see you when I see you.
- Get out of the bed.
- (Hallease laughs) Okay wait. Go back down. You can't be talking through what you're doing.
- Oh. Lay back down.
- Yeah, you just gotta get out the bed.
(Both laugh)
(Laughing)
did you fall back asleep dad?
- Oh, you ready?
- I'm ready. (Laughs)
- Oh!