"ignore the story. see the soul. remember to love. you will never regret it" --- Seane Corn

"ignore the story. see the soul. remember to love. you will never regret it" --- Seane Corn
it's a jungle out there

Tuesday, September 28, 2010

Cultural Sensitivity: Part II


Sorry ladies. Part II is not about Key Food Cindy

It's about Lead Head Christine.

Lead Head Christine is 3. She has a lead level of 54.

That's REALLY high. Anything over 5 is elevated.

We NEVER see lead levels that high.

54=decreased cognitive function
54 is high enough to cause lead deposits in little kid organs
54 can=brain damage

Christine has 2 older brothers. When her routine lead test came back so high, we checked them too. Their lead levels were 3 and 4.

Does she put things in her mouth? Does she eat things that aren't food?

Pretty much.

She doesn't look particularly healthy. She's got bad eczema and a constantly snotty nose. Her hair is kind of falling out in patches. She doesn't talk much and doesn't make much eye contact.

One could argue that she doesn't talk or make eye contact because she's been in the office 4 times in the past two weeks, and every time she's gotten poked.

First a fingerstick. 38. Then a repeat fingerstick. 32. Then out of her arm. 54. Then out of her arm again.

That's where I come in.

I'm familiar with the family. They are from Nigeria. I've always found the mom to be a little odd. The oldest boy is autistic.
The middle boy is not yet diagnosed, but I suspect he's on the autism spectrum as well.

Christine came in last Wednesday at 7pm with her father. The chart notes were confusing. We were really busy. I was in a rush.
Dad said we came in to get her lead checked again. I flipped through the chart and saw the report of 54.
I ASS U MEd it was a fingerstick and she was in for a venous confirmation as per Department of Health protocol.

In NYS, lead stuff is followed by the Department of Health. We routinely check kids at 10 months and 2 years. Abnormal results go first to DOH, then to us. The DOH goes in and checks the home environment to determine the source of lead exposure. Our job is to treat the kid appropriately, based on the kid's level. Treatment guidelines are determined by the state.

So while I'm waiting for the nurses to poke Christine yet again, I asked Dad some questions.
According to Dad, the Dept. of Health had checked the house. According to Dad, there was no lead in the house.
I asked about a backyard.
Does she play in the grass? Does she eat the dirt?
No, the children are never out there.

Short story longer-
Christine was not supposed to come in Wednesday evening for a repeat level.
She was supposed to come in Wednesday during the day to be admitted into the hospital so we could Get The Lead Out.

Seems there was a "miscommunication".

Once I sorted the whole thing out, I explained to Dad that we needed to put Christine in the hospital to start treatment.
It didn't make sense to admit her Wednesday night because we couldn't start anything until the morning anyway.
I told Dad to come back Thursday morning, and we'd send them to the hospital and start her treatment.
I signed the case out to Dr. A, who would see Christine the next day and get her into the hospital.

Friday I'm back in the office and check up on Christine. No show. They didn't come back Thursday.
She's not in the hospital Getting the Lead Out. She's still at home.
I get a call from Wendy the Lead Lady at the DOH. She's concerned that Christine is still in a lead filled environment and hasn't started treatment.
Wendy says all the windows in the house are full of lead dust.

????

Why did Dad tell me the DOH didn't find any lead in the home?

Short story even longer-
All the windows need to be replaced. They own their home. There are no government funds to assist with lead abatement. The Department of Health had made 4 home visits and explained to Mom and Dad that Christine needed to be hospitalized to initiate treatment and would not be able to return to the home until all the windows were replaced and the DOH determined the environment to be lead free.
Lead Lady Wendy was pretty confident that Dad had full understanding of the situation.

I get on the phone with Dad.
He's refusing to bring Christine in for treatment.
He's aware that this level of lead causes brain damage.
He's aware that every day that Christine's lead level remains this high, it's causing more damage.
He's aware that the damage is irreversible.
I start to get worked up.
He wants to treat her at home with supplements for a month, and then test her again.
I advise there is no way treatment at home will bring the lead down to an acceptable level. She will need hospitalization anyway. It will just be another month of brain damage.
He says that since we don't really know how long her lead has been high, another month won't make much of a difference.
He continues to refuse hospitalization. He is aware that he is ignoring our medical recommendation and the recommendation of the Department of Health.
I let Dad know that he will be hearing from someone else in our office and the DOH as well.
Nigerian Dad remains polite and respectful the whole conversation.
But he wants to do it his way.

I turned away from the phone to see 6 wide-eyed nurses, mouths all agape.
They had never heard me speak to a patient in that way before.
They couldn't believe that Dad was still refusing treatment for his child.
They were all in a tizzy.

I ran it past a few docs. You can only do what you can do. You made the situation very clear.
Frustration spoke the words stupid, ignorant, idiots, in reference to the parents.
not my frustration. other's frustration.i may refer to my ghetto moms as train wrecks, but i never call them stupid

Dad is not stupid. Nor ignorant. Nor is he an idiot.

I didn't get it.

I went home Friday and didn't think about Lead Head Christine for the entire weekend.
I had done all that I could do.

First thing Monday, the nurses asked me if Christine had been admitted.
They had all worried about her the entire weekend. They couldn't understand how parents could be so negligent. Didn't the parents care? Did they want their child to have brain damage? If my child had a lead that high, or anything that serious, I'd do anything to fix it. Didn't they understand?

The parents totally understand. I'm thinking we don't understand.

Then I get a call from DOH Lead Lady Wendy. She had spoken with the Regional Director of No More Lead Heads/Get the Lead Out. The first priority was to get Christine out of the home. Second priority was treatment.
DOH Lead Lady Wendy was concerned about the extent to which we are responsible for getting Christine out of the home and in for treatment.
Turns out we're uber responsible. Like call CPS responsible.

Fuck. I HATE calling CPS.

Something wasn't sitting right.
I know these parents care about their kids. I know they are not negligent.
hmmmm....

Maybe Nigerian Dad needs a Man to tell him.
I bring this up with DOH Wendy who says you know... we were wondering the same thing... our lead team is all women... and he's always been very polite, but...

So I get Man Dr. B to call Dad. Man Dr. B says all the same things I did. But with a deeper voice and a set of cojones.

Does anyone know how to say balls in Nigerian?

NOLA, you out there???

Lo and behold, 3 hours later Christine is checked into the hospital to Get the Lead Out.

sigh

Dad's replacing all the windows himself. Christine's lead is down to 20 now.
She can't be discharged from the hospital until there is a DOH approved lead free environment in which she can stay.
Dad says none of his family or friends will allow the DOH in to their homes to give their lead-free stamp of approval.

sigh

OK. So I know NOTHING about Nigeria, historically or culturally. shame on me.
But let me tell you, I didn't worry about Christine and her family until we forced them to hospitalize her.
I don't like telling people what to do. Sure, I can be bossy. But I try very hard not to be.
I try to educate and offer options and make recommendations, and let folks decide on their own what's best for them and their kids.

This kind of socio-medical hegemony? Potential threats? Like we're gonna call CPS if you don't do as we say? eeek.
It makes me feel yucky and kind of sick to my stomach. I don't like invading people's personal space like that.
And I think we are all entitled to make our own decisions.

I wonder how Christine's parents felt. We come in and tell them their home is unsafe. Their daughter has to go.
They have to spend thousands of dollars to fix their house and get their daughter back.

sounds like extortion. or kidnapping. or ransom.

Like I said, I don't know anything about Nigeria. I don't know anything about the conditions in which Christine's family lived before coming here. I don't know what this kind of ummm... invasion... may conjure up for them.

Our current culture puts children first in a way that no other culture has. At least that's what I've heard.

My only reference to anything African is The Poisonwood Bible. and that's the Congo....again... shameful...
I just have the impression that in places where life is so damn dangerous, you don't sacrifice the whole family for one kid.
The Man might not put his job, or savings, or home, or other children on the line to save One.
Here, we'll loose our house, our savings, our kidneys.
We'll spend a fortune for specific in vitro DNA matches to make a baby to be a donor for another child who needs bone marrow or organ transplant.
We'll sacrifice the health and well being of an entire family to focus on the tragedy of One.
That's the way we do it here.

So. I feel guilty for manipulating Dad to get Christine the treatment she needs.
I don't know what kind of financial strain or ill will our actions have precipitated.
The three year old is better off.
The nurses feel vindicated and smug.
Christine's Dad is still changing out the windows.

I just have a stomach ache.


18 comments:

  1. I didn't even think about that message not being *heard* because it was coming from a woman until I got to the part where you spelled it out.

    And I was raised by a single mother who is all too familiar with not being listened to because she is a woman.

    Quite a story. I don't think you should feel bad about "manipulating" him (I don't see it as manipulating, only communicating in way that would reach him). But saying that doesn't mean you won't.

    ReplyDelete
  2. When I was in nursing school they tried to teach us about cultural sensitivity but of course, as you know, it is impossible to cover all the possible bases anyone might encounter in their practice.
    Michelle- I think you did what you could and what you should. I have no idea what the father's thinking was and neither do you.
    But I understand why your stomach would ache. Where is the line between freedom and protection of children?
    I have no idea.

    ReplyDelete
  3. Is there any way the hospital can do a benefit to help the family for the window expenses? Can the hospital call the window company to try and get the dad a discount or rebate?

    ReplyDelete
  4. Did you read that book The Spirit Catches You and Then Fall Down? Same sort of cultural snafu.

    I run into similar stomach ache inducing situations with many parents... ack.

    ReplyDelete
  5. Have you ever read the book "The Spirit Catches You and You Fall Down" by Anne Fadiman. It's the best book about cultural competency, I think, on the planet. It also happens to be about epilepsy.

    Oops -- I just saw only a movie's comment --

    anyhoo -- cultural competency is tough. I have to think you did right. What if it was about clitorectomy? I mean, I get it -- I would feel sick to my stomach as well, and certainly not smug. Gosh, I wish we could sit down, you and me, and compare notes, have a drink, etc.

    ReplyDelete
  6. I would also say that a lot of kids who have heavy metal poisoning have parents who have heavy metal poisoning. Lead poisoning being harder to identify in adults, but can also cause poor cognitive processing.

    ReplyDelete
  7. Serious food for thought here. You always leave me with a deeper perspective, Michelle.

    ReplyDelete
  8. Wow. This is the most thought provoking and interesting post I have read in ages. Wow. It is really a gift to see things from all angles like you do, to do what you do and find a way to get the right things done. You amaze me.
    Thanks for the perspective. We all need more than we have, it seems. Hope your stomach ache is gone.

    ReplyDelete
  9. I don't think you should feel bad. It's tough to see kids suffer when there are things that can be done to solve the problem. I think this story put in to perspective how blessed and fortunate we are to be women in this society. We have so much freedom that other women don't have in other cultures. We have the ability to hold important jobs, wear what we want and be treated with respect by men. It's sad that men from certain cultures don't see our value. What scares me is that if there is one man like that Nigerian father out there, there are many more. You can only do the best that you can each day and go to sleep knowing you did your best.

    ReplyDelete
  10. I don't leap to "cultural sensitivity", I leap to "why the fuck are women still 2nd class citizens in the year 2010". I bet he would have acted faster if it were one of his sons.

    ReplyDelete
  11. I understand your upset, but you did the best you could for the child. You didn't do it out of any kind of ill will towards the parents.

    All you can do is the best you can do.

    Love you, Michelle.

    ReplyDelete
  12. I love that my shout-out here is about West African genitalia. Sadly I don't know how to say that in any of the many languages there ... but I'm sure it would be super easy for me to find out. ;)

    I just left my job as an attorney for abused and neglected children and I tell ya I felt these exact feelings on a regular basis. Not daily thank goodness. And thank goodness my job was to fight for whatever the children wanted - if they wanted to go home to a home that the state found inadequate, I'd still fight it hard to get them there. The judge would rule "best interests of the child" - but what I found pretty damn fast was that what children want usually is their best interests and they know more than outsiders. Especially once I advise them.

    I think your instincts are right to have a problem with this - but I will also say: they chose to live here and move here. By doing that, they chose to follow our government's notions of childrearing. You don't get to legally mutilate female genitals here, either.

    Here's the other thing I thought of: I've never heard of such intensive lead abatement. In New Orleans, lead poisoning is wicked widespread and I've heard of NOTHING like this. I had the soil in my yard tested and it was like 10,000 times higher than a healthy lead level. Yeah, kids play outside ALL THE TIME there. In that dirt. I have a very strong theory that one explanation amongst several for the violence in New Orleans is lead poisoning. Would I want kids removed from families to get the lead out? I don't know. Would it mean that later they might not turn to a violent life that would not end well for them? I don't know. Because I get that sick in my stomach feeling too for the same reasons as you.

    ReplyDelete
  13. I think you are very sensitive to see both sides of the story. It's a shame things can't be more black and white sometimes - either good or bad, for the whole family.

    ReplyDelete
  14. The problem with first generation ex-pats is that the only thing they know for certain are the traditions of their own "tribes". That has proven permanent and comforting, alas some times in a wrong sort of way, but indeed those traditions represent lineage, continuity, belonging.

    Pride enters the picture when it comes to money. A man needs to keep "face" in certain cultures. No elders around to advise about how to handle the situation, everyone is a stranger and one does not confide personal problems to strangers. A woman is still in many cultures, including ours, a secondary source. I am sure I need not to explain this sentence here. So, your kind and "maternal" voice to his perception was not the forceful and feared voice of someone in authority. Just one among the many factors that we somehow seem to misplace in our daily contact with foreigners.

    You are right about the pit of the stomach feeling. Those of us who have worked with children - I was at Columbia-Presbyterian Pediatric Seizure Clinic in the seventies - have experienced the "impotence syndrome". Just think of the old Zen saying about those "who do the best they can cannot be expected to do more", you did your best, of this I am sure, what else is left?

    Good to hear your voice in our home. Photos o the garden and recipe coming up tonight.

    ReplyDelete
  15. None of you can possibly be paid enough to compensate you for the making of the tough decisions, nor the stomach aches that seem inevitable to me. But I sure am glad you're on the front lines, Michelle. I sure am glad. Love you.
    xoxox

    ReplyDelete
  16. what Mel said, this really woke me up. Your thinking/feeling is much deeper and smarter than mine. You stretched my brain.

    ReplyDelete
  17. my knee jerk reaction is to say 'fuck cultural sensitivity' and just hope all those kids are ok.

    ReplyDelete

so... wadaya think?

Your fairy is called Columbine Icedancer
She is a bone chilling bringer of justice for the vulnerable.
She lives in mushroom fields and quiet meadows.
She is only seen when the bees swarm and the crickets chirrup.
She wears lilac and purple like columbine flowers. She has icy blue butterfly wings.