Sunday, February 26, 2012

medical information.

There is no way around it; it is difficult to hear (or read) a report on your future child's health and read the long list of "what ifs". 

We now know intimately how scary that feeling is. We always knew it anecdotally, but we know it for real now. 

The holes in the records of those adopted internationally are glaring.  They are things that most (certainly we!) did not think of.  Things as simple as a head circumference from his birth are necessary and (in our case) not present.  Unreliable testing from foreign lands adds an additional layer of complexity; never mind the tests that have never been performed or are missing.  Kidney function?  A hearing test?  Vision exams?  It seems that nations such as Bulgaria prefer to use their ultrasound machines rather than rely on comprehensive, good quality physician care. 

Without these tests and in the absence of absolutes, there are few definitive conclusions to be drawn.  And in the absence of that, a competent physician (such as the ones who work for Children's Hospital in Philadelphia) can only speculate.  They are morally bound to provide us with as much hypothetical information as possible, but that information can be scary and confusing.

For example: a hearing test.  When his medical record says he's had a hearing test, we assume he's had one.  But the doctor at CHOP explained in more thorough detail that sometimes, the "hearing" tests consists of nothing more than a hand clap beside the child's head.  If the child turns his head, it is a "good" hearing test.  This cannot possibly evaluate the finer points of hearing and the various ranges.  Because he has a significant speech delay, is it because he cannot hear, or cannot hear well?  Without a proper hearing test, we cannot know. 

That is the scary part.  It reminds me a little of the home inspection on a house you are dying to buy.  The home inspector always seems to come in and tell you something horrid - like the house has termites or all of the plumbing is leaking, or the house's foundation is falling into the ocean.  Suddenly, the beautiful house is flawed, and you are left to wonder:  Should we buy it anyway?  Can we repair the leaking plumbing, can we restore the floors that were eaten away by termites?  Do we have the money, the time, the resources?  And home inspectors usually go a step further and tell you all of the "what ifs".  They do this by using the term "useful life".  So, a home inspector will say, "I know the hot water heater works - NOW - but its useful life is only twenty years, and this has been working for nineteen years."  Or, "A furnace is designed to last ten years, but this one has been in service for eleven."  Mentally, you're counting up the thousands of dollars a new furnace and hot water heater costs, even though those systems are currently functional.  It's the "what if" game. 

His eyes are crossed.  What if he's blind in one eye?  His biological mother was apparently diagnosed with a mental illness.  What if he has it too?  What if his whole family is afflicted?  He is not currently walking. What if he has a congential defect?  His speech is severely delayed.  What if he can't hear? 

The wonderful consultants at CHOP (or anywhere) can't completely answer those questions either.  They offer opinion, insight, and assistance with asking future questions of the overseas providers; questions that, more likely than not, won't be answered or won't be answered well.  The bottom line is, with all of our available information and with everything we know, we will simply have to rely on our own feeling and faith. 

That is a tough thing.  As responsible parents to a daughter with special needs, that is a very tough thing indeed.  We are generally pragmatic, and this situation (international adoption) is one that relies very heavily on acceptance of unknowns.  The CHOP doctors classified this little boy's referral as a "moderate risk". Not the worst, not the best.  Moderate. 

 “I will instruct you and teach you in the way you should go;
I will guide you with My eye.”
Psalm 32:8


  1. You will get a much better feel for things once you see him in person. Out of 10 kids we adopted internationally, only 1 had an accurate medical. Only one. 3 different countries. I think you are doing right by getting a good set of doctors in place for when he gets home. He is young so early interventions will help immensely. I wish you all the best on your journey. Adoption is always,always a leap of faith, especially in regards to the medical info you'll receive. Stephanie.

  2. Both of my kiddos were considered high risk and both were a leap of faith on our part. Both are wonderful, despite significant medical and developmental challenges.

    Now that you have the "on hold" referral, you can ask if your BLG NGO would get some additional info from the orphanage, like head circumference at birth and now. That particular measurement seems never to be included in BLG child reports unless there's microcephaly.


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