Atresia

There is one, and only one, purpose for me writing this post: to provide some positive pr for CHI.  While conducting my surveys earlier this week, I had a pair of mothers bring their children to me with medical complaints.  This happens fairly often.  I never turn them down, but most of the time I only decide between immediate treatment, referral to our CHW clinic, or referral to our large clinic in April/May.  Sure makes my job easier and nobody ever is let down.

These two ladies were carrying their children.  The first one had been having a "feyev" and loss of appetite for the last few days.  She was small.  Her belly was swollen.  "Has she had any diarrhea?"  "Yes."  I measure a mid-upper arm circumference.  It's borderline yellow and green.  Certainly not an emergency, but she's far from healthy.  I don't even hesitate.  "You should come to our clinic tomorrow morning.  We can give your baby some medicine to treat some of the infection in her stomach."  And it won't hurt to go ahead and establish this family as patients so we can follow up with the little girl #DontLetHerGetWorse.  Next Patient.

She's maybe a couple months old.  Her eyes fixate on nothing.  They just have a glassed appearance as they dart from left and right.  She doesn't even seem to localize to sound.  I'll have to review my developmental milestones later #MedStudentProblems #Step2Sucks.  I ask the mom what the problem is.  The answer is not one that I expected.  "She has no butt hole and she has poop coming out of her vagina."  Wow.  I didn't even have to ask.  All of a sudden the mom was sitting down, laying her child face down over her knee, and pulling down her pants.  Sure enough, no hole.  Just skin.

The fact that poop was coming out of her vagina was life-saving.  A quick Wiki search revealed that 1 in 5000 live births have this problem known as imperforate anus or anal atresia.  This sort of anomaly is diagnosed at delivery in the United States.  Meaning that the surgery is performed before the mom and baby leave the hospital.  This girl was born in mid-December.  Again, my role at the time was simply triage.  "You need to bring her to our clinic tomorrow morning" #BrokenRecord.  "She'll likely need surgery and we can help you figure out where you need to go."  Needless to say, she needed screening for a number of other congenital abnormalities.  Those things run in packs. #VACTERL

I went about the rest of my day #MoSurveysMoProblems.

The next morning clinic went surprisingly well.  Angie ended up seeing both the patients and gave me the quick update when I got back for dinner that evening.  One got Cipro for dysentery.  The other got a phone call to our local contacts to figure out how to get her surgery.  The gist was this, they could do the surgery at the children's hospital  in Port-au-Prince.  In order to be seen you have to show up well before 7 am when they start handing out cards.  If you get a card then you'll be seen that day.  If you do not then you're out of luck.  As far as we know there is no triage.  There is merely chance.  We gave the patient some money and told her the process.

Later that same day we talk to some other people.  The surgery is certainly performed in Haiti, but to terrible outcomes.  Most children do not survive.  Not much else needed to be said after that.  The mice wheels were rolling.  Angie emailed Dr. Chris Cooper at Iowa about our situation.  The Dean was nice enough to forward the girl's story on to the surgery department.  Within an hour we had a surgeon volunteer to fly to Haiti to do the procedure, or we could bring the girl to him.  #Success.

All we have to do now is file for a medical visa, convince the University of Iowa to accept her as a patient, fly her to the United States, have the surgery go swimmingly, and then fly her back to Haiti.  We're no Dr. Paul Farmer.  We have neither his connections nor the financing of a well-endowed private University supporting us.  I would copy/paste the instructions that were sent to us on here, but it would make my already long winded blog posts creep into the ad nauseum range.  Let's just say it asks for many things including many identifying paperwork that I would be very surprised if the family had.

If only the paperwork were the major hurdle.  The University of Iowa is a publicly funded academic medical center.  Therefore, the decision-makers must decide how to spend tax-payer money.  I have encountered this problem before when I pursued having them donate expired medical supplies to our organization for use in Haiti.  Let's be honest, does sealed IV tubing really have an expiration date?  Of course not.  Even medication is okay for some time after the expiration date.  It may not be quite as effective, but few will convert to harmful substances.  However, the hospital has to unload the supplies.  Why not give them to a charitable organization who will still make good use of them?  Because it's publicly funded.  Every piece of medical equipment in the hospital was purchased with public funds.  Therefore, each piece of equipment must be accounted for, even if it is 'accounted for' in the trash bin.  #Poppycock.

I was naturally frustrated by the entire process, and our current endeavor will likely lead to similar frustrations.  I would like to think that some common sense things should be allowed, like donating medical supplies when it would otherwise be thrown away.  Shouldering the costs of a major surgery and the possibilities of a prolonged hospital stay are definitely more difficult decisions.  On the one hand you have the #HumanFactor.  Anyone who can look at this little girl in her roving eyes and deny her a surgery is a heartless SOB.  Fact.  Unfortunately, we have to keep our decision makers away from emotion so that they can make the most reasonable decisions based on objective information.  I'm sure when one insurance company gets persuaded to suddenly cover a major experimental treatment that every other insurance agency shudders.  It's bad for business.  You can't let emotion get in the way.

Sometimes I get like that.  I try and separate myself from the #HumanFactor and think big picture.  In the big picture, is it a good idea to expend the thousands of dollars to fly this child to the U.S. for her surgery?  I don't know.  Is this a good precedent to set?  Should we tell the people of Arcahaie that we don't think the Haitian doctors are capable of taking care of you, so we'll just ship you to Iowa so we can take care of you?  But then I realize that I'm the 'doctor' (or one Oto rotation and a semester's tuition shy of being one) and I can't ignore that #HumanFactor.  I have to see that baby.  I have to look her in the eyes.  I have enough problems sleeping at night (See Insomnia) that I don't need to have pervasive thoughts reminding me I didn't do everything I could to save this girl's life.  And trust me, they would be screaming in my head.  #VitaminH couldn't even stop them.

I think the #HumanFactor that I refer to is the most important thing for doctors.  The first law of medicine is 'do no harm'.  If physicians cared.  Really cared.  Then that would go without saying.  If you care about your patient you will not harm them.  If you care about your patient you will advocate for them.  If you care about your patient they will trust and care about you.  If you care about your patient you run the risk of getting hurt.  So, many doctors stop caring.  It's the easy way out.  Patients like this one are reminders that I can't take the easy way out.  She deserves an advocate.  She deserves to be cared for.  I'm a doctor.  That's my job.

I cannot predict what will happen for this girl, her family, and, most importantly, her anus.  I only want a successful surgery followed by an uncomplicated and complete recovery.  I don't think about cost.  I can't think about cost.  I can only think about how I can help this girl.  I'll understand if the University of Iowa does not want to assume the liability of her case.  I won't accept that we can't help her.  She is our patient now, Angie's and mine.  And we care.

I'll do my best to continue to post updates about the progress in getting her treatment.  And if anyone feels inclined to share this story with some influential political leaders that might end up falling for the story, I am supportive.