The Stigma Stings.

Before I took on a leadership role for the general peds clinic where I currently work, I was a Pediatric HIV Case Manager.  This means I helped my little (and not so little, I managed college students as well) clients and their parents manage their medications, labs and all the resources available to them in the community.  I drew kid’s labs, I made home visits where I occasionally gave injections, and I did it without giving it a second thought.  I followed universal precautions and knew that because I did, I would have no issues.  I know that I’ve come into contact with children in Ghana who are HIV positive.  I never gave a thought to squeezing them when they were hurt, bandaging them and, basically, treating them ABSOLUTELY NO DIFFERENTLY than I would treat any other child.  This leads me to my current frustration.  I didn’t blog about it when it happened, but I’m still bothered by it.

When Giggles and ShyGuy were in Ghana, we didn’t have them HIV tested.  It wouldn’t have changed my decision and no medical care was available to them at the time, so why bother?  Obviously, we did it as soon as we arrived home just to make sure they didn’t need further medical care.  We didn’t get the results before the great stitches debacle though.  As Giggles was bleeding all over my hands I didn’t think twice about it.  No biggie, I didn’t have any open wounds, I was protecting my hands as much as possible by using gloves and gauze, so it shouldn’t be a problem.  We went into the ped’s office right away.  He evaluated her, without really touching her because she was SO freaked out.  He asked FPD to try to soak the dried blood off of her ear so that he could see better.  FPD did this, carefully placing the used gauze on the exam table on top of a disposable waterproof pad.  The nurse came in and threw it into the wastebasket.   The Pediatrician came in and looked at her ear again.  This time he gently touched it (with no gloves).  As he’s examining it (by now it has stopped bleeding), he casually mentions that she will need a Tetanus vaccine because we have no vaccination records for our Giggles.  I, in turn, casually reminded him that we haven’t received HIV or other lab results yet.  I wondered if it was safe to give this vaccine to a child who MAY have a compromised immune system.  Our friendly, supposedly educated, pediatrician immediately lets go of Giggles ear and practically RUNS to wash his hands.  He continues to discuss her ear, the vaccine and what we should do for the wound, all the while he is removing all the bloody gauze from the regular trash can and putting it into the biohazard bin…where it should have been in the first place!!!!  He acted short tempered and irritable, as if we were so irresponsible for not notifying him of the fact that our child MIGHT have HIV.

The very purpose of universal precautions is that they are, well, UNIVERSAL.  Even if we knew my daughter were HIV positive, we wouldn’t have to inform her school, her babysitter, her coach or anyone else.  Everyone is taught about universal precautions.  Everyone is told to wear gloves when dealing with any kind of bodily fluid.  Some parents feel an ethical obligation to tell the people in their children’s lives that might come into contact with their bodily fluids.  That’s cool.  I always counseled parents that this was their choice, not their obligation.  If people do what they are trained to, it’s a non-issue.  You don’t HAVE to disclose to anyone.  This is matter of privacy for these children as well.  Some parents are very open about their child’s status, some are not.  It’s all a matter of comfort.  Lack of knowledge and the stigma are what keeps people afraid of this disease when it really is NO.BIG.DEAL.

–FullPlateMom,
who found out today that her Duo happen to be negative, which makes her happy.  But, if it had gone the other way, it wouldn’t have changed a thing, they would have still been destined to be ours.

2 Comments Add yours

  1. I bet a lot of us have had similar experiences. Ignorant people are everywhere. I was one of them a year ago, until I started to learn what I needed to prepare myself. “If ye are prepared, ye shall not fear.” We did not know Efia’s status until a couple of months after she came home. Like you said, it wouldn’t have changed a thing and it still doesn’t. I would bet that the people who matter the most will never even ask. I am sorry that you had to deal with a medical professional, who ought to know better, acting like a fool.

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  2. Wow….I bet in hindsight that you wanted to five this guy a piece of your mind!!! My girls didn’t get tested until we got home. They tested negative. I had people at times ask about if we were afriad if they had HIV. We never even thought about it….they are here, they are ours…the end. People! 🙂 Come on! 🙂 Especially a health care professional behaving this way. wow. Glad your tests came back negative, but if they hadn’t life would have gone on just the same. Take care!!!

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