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Sunday
Aug072011

race. trust. medicine.  miscommunications.

*Please note, the names and details of patients and staff have been changed to ensure anonymity.  I have attempted to stay true to the nature of the stories in as much as their identities can be concealed.

So, I said I was going to talk about Queenie's family in my post yesterday and I ran out of steam.  I want to do her family the justice it deserves, rather than write about them while exhausted or disappointed.

Queenie's family was ideal.  Well... maybe the structure wasn't ideal, but the members that were there were stellar partners in labor. 

Cast of Characters:

1. Rayray: Probably the most interesting person in the room.  For the first twenty minutes I was like, "damn, that is one tiny man."  Then I noticed what MIGHT be breasts.  Then she started talking about 'having' Jerimiah--like, giving birth to.  Oh.  So Rayray is a woman?  Rayray is the mom of Queenie's baby daddy.  He was murdered this past year, so she was here to rep for her son.  More on this later.

2. Trina: The best sister a girl could ask for.  Right by Queenie's side the entire time.  Honestly, a god-damned ideal labor coach.  I don't know if she has any formal training, but she'd make a kick-ass doula.  Fierce!

3. Rochelle: Queenie's momma.  Tall and very thin, another good partner in Queenie's labor.  Asked a lot of really good questions and spelled out all of Queenie's options.  She becomes important in the decision not to have an epidural.

There were a few other friends and family in the room that played fairly minor roles (pictures, saying 'oh God,' etc.). 

From the very beginning, as I mentioned previously, Queenie didn't want any kind of intervention.  She did not want an epidural, a c-section and she wanted to breastfeed.  I was describing this family and situation to Jess without using any names.  Eventually it came up that the family was black.

"I actually thought it was a white family when you were first talking about it," Jess said.

I know why.  It's the same reason most people would think it's a white family.  You get this image of a hippy-dippy lady who hasn't shaved her legs in ten years that wants everything to be natural and groovy.  I mean, we live right next to Ann Arbor, the home of lactation pride groups and a center for Doula training.  We are familiar with yuppie birth activism (and are a part of it, please and thank you).  It's the new cause among limousine liberals, taking birth back to what it should be--an experience for mom and baby (and partner if he or she is cool). 

But I also know why plenty of black families have the same hesitations about birth interventions.  Perhaps because, as a race, black folks have been shit upon by the medical establishment?  Perhaps because the sting of Tuskegee has yet to subside?  Or because the Lacks family (of HeLa cell fame) is still living poor as hell, despite the fact that its matriarch was the source of the most distributed and profitable cell line in the world?  I guess those are some good reasons. 

The history of medical progress in America was built upon the backs of black men and women who were suffering for one reason or another.  It's no coincidence that research centers and teaching hospitals surround the urban poor.  Want free medical care?  Sign this release so we can use your cells/tissues/stories.  Have no other place to go?  I guess you have no choice. 

I am not suggesting that research is bad, or that free medical care is problematic, but we have a really shameful history of taking advantage of people in poverty.  Some examples:

The Tuskegee study: I really hope most of you have heard about this particular atrocity.  Back in the day, when syphilis plagued the US and penicillin was just becoming available, there was great concern about the long term effects of syphilis.  For those of you who haven't been blessed with classes on STIs, syphilis has three stages, and the third stage can be a real killer.  Neurosyphillis causes a number of disturbing symptoms: blindness, gait ataxia (walkin' funny), dementia, personality changes, hallucinations, etc.  In any case, the study began in 1932 and aimed to study the natural course of syphilis.  It enrolled around 400 black men who were infected with syphilis and 200 who were not.  The patients were given free medical exams, meals and burial insurance (which... let's be real, they were going to need).  What they were not given was access to informed consent.  In the South, the term "bad blood" covered a multitude of medical conditions including, but not limited to, anemia, syphilis and chronic fatigue.  The men had no idea what they were being studied for, but they were happy to be part of the study--hoping, even, that there would be a cure for them.  In 1943 Penicillin became available as the treatment of choice for a plethora of bacterial issues including syphilis.  Quickly, many ailments that were once considered death sentences were treated and cured.  But not the men of Tuskegee.  The study continued and the men were actually denied treatment with Penicillin several times.  Since these men were told again and again they were doing a great service for other black people suffering with bad blood and because most of the men were lacking an education, few chose to ask questions.  They believed the doctors they were working with.  The study continued until 1972 when an article by the Associated Press revealed the ongoing atrocity.  Following a public outcry, the study was stopped and two years later, the National Research Act was established.  This act required all federally funded research studies with human subjects to be passed by an Institutional Review Board.  This was perhaps the greatest triumph the men achieved.  Informed consent is now a part of every research study. (Although, would we be surprised if uneducated and disadvantaged folks were still taken advantage of?  No.)

HeLa: Thanks to the curiosity of one Rebecca Skloot, the world is now privy to the sad story of Henrietta Lacks.  Anyone who has ever taken a biology course should be familiar with these four letters: HeLa.  These four letters represent the woman behind a line of cells that just won't stop growing.  Henrietta was a very, very poor black woman who fell prey to an aggressive strain of cervical cancer while very young.  Diagnosed in her last pregnancy, Henrietta was a patient of the Johns Hopkins hospital--the black ward, obvi.  (We wouldn't want sick black people mixing with sick white people, right?)  After several attempts to cut out the tumor, to treat it with radium, Henrietta's entire body was overcome with tumors.  Henrietta died while several of her children were still in diapers.  But before she died, several samples were taken from her tumors by a young and eager pathologist, George Gey.  Gey was an innovative and brilliant scientist, Henrietta's cells changed his life.  The cells grew wildly, almost uncontrollably.  Gey realized he had something truly important in his lab, so, as a true scientist would, he began to share his discovery.  Soon, Henrietta's cells were traveling the earth and growing in labs on the other side of the world.  All without her family's knowledge.  As Henrietta's family continued to live in poverty, her cells became an empire and a money-maker for entrepreneurial scientists.  Over the course of the past few decades, the Lacks family has been harassed for tissue collection, visited by curious scientists and contacted by a multitude of media outlets.  Henrietta's children grew up poor and uneducated and did not understand what was happening with their mother's cells.  They heard stories of hybrid HeLa-plants, her cell's role in curing Polio, etc..  What they never saw, though, was a dime of the money that was made off of her cells.  Much like the Tuskegee study, this story was shoved from the media spotlight again and again.  Until Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, published her best seller, few people knew about the extreme social inequalities that made so much research possible. 

Of course, these two stories represent only the more sensational intersections of race, ethics and medicine.  However, the scars that come with these memories are deep.  No matter how incomplete the education of urban black folks, most know the Tuskegee story.  Most black folks have some type of connection to bad, race-based medical care.  It only makes sense, then, that there is a pervasive mistrust of the medical establishment--especially in large health systems like those in Detroit.  While the academic institutions in Detroit follow research rules to a T, how is someone who is scientifically and legally illiterate to understand what rights he or she is waiving?  The hesitance that most doctors read as obstinance is often a well-justified defense. 

The thing about medicine is that most doctors are white.  That's just the facts, Jack.  And in a hospital like the DMC or Henry Ford, which are in Detroit proper, most of the patients are black.  It's a strange atmosphere.  The doctors and nurses largely live outside of the city, near wonderful grocery stores like Plum Market.  They have gym memberships (that they probably use rarely) and kids in safe schools.  They like to take walks to the local ice cream place in the summer--without fear of violence.  It's more than a geographic difference.  Living in the burbs is paradise compared to living on the eastside of Detroit. 

suggestion: google 'happy family', observe skin color

It's hard, then, for me to do my favorite job: health education.  Don't get me wrong, I love talking about ways to stay healthy, but how the HELL do you expect me to tell someone who has never owned a car and who can barely walk down the street safely to eat more fruits and vegetables?  The nearest grocery store is a solid 20 minute bus ride--after an unsafe 10 minute walk.  I may love to talk about exercise, but sometimes my first priority with patients is their safety.  Especially with a new baby or a baby on the way. 

But families like Queenie's are doing the best that anybody could.  Sure, they aren't the picture of health, but they are surviving, and loving each other, and watching out for each other--and sometimes, that's enough.  I would give anything to spend a day with them and learn more about each of them.  Their strength really impressed me.  Queenie's man (Jerimiah) was shot just months before I met her.  Jerimiah's momma, Rayray, was at the birth.  She was there to do the role Jerimiah would have loved to do: cut the cord.  Despite Queenie's physical and emotional pain, she was so, so strong. 

Could you even imagine going through labor without the partner you planned on raising that baby with?  Because he was murdered?

Sometimes, I just stand in awe.