Friday, September 21, 2012

The Great Tuberculosis Fiasco

Michelle requested I play the TB card first so here goes.

All children who are adopted internationally must undergo a physical exam and some blood testing prior to being issued a US visa.  Some children, based on their background, medical diagnoses, etc., undergo more rigorous testing.  Bamlak and Hiwot fell into this category and had to undergo extensive testing for Tuberculosis (TB).  This testing began in December and involved TB skin tests, chest x-rays, and serial sputum cultures.  I later found out after much investigation that the sputum cultures were actually gastric aspirates.  It is routine that these cultures grow for 8 weeks before they are deemed negative and the US Embassy clears the child/children for entrance to the U.S.

Backpedaling a bit; when we visited Ethiopia last December, I left saying that I was 99% certain Hiwot would test positive for TB.  For the year prior all of the monthly updates we received indicated she was generally sickly, never gaining weight, usually losing one month, going back up the next and continuing that cycle.  She had frequent colds and GI illnesses.  Spending a week with her, it was obvious that something was going on.  She was just weak and didn't have any stamina.  She would break out in cold sweats with no warning, had a persistent cough and runny nose and just didn't look super healthy.  A positive TB test would be a pretty huge setback in that she would in all likelihood not be released to our custody without receiving months and months of treatment.

We were on pins and needles once testing started waiting for 'the call.'  I was shocked when our agency called to tell me that the children received Embassy clearance.  I told our coordinator to get an appt as soon as humanly possible and that I would book a flight within days.  She tried to convince me to wait a week or two, but something in my gut told me we had to hurry.  Maybe I felt burned from our experience in Kyrgyzstan, maybe Mommy Instinct kicked in, maybe I just desperately wanted them home, but we threw it together and I was down there in a few days. 

Fast forward to the day after week got home.  The phone rings and it's our coordinator calling to tell us that the US Embassy made a horrible mistake.  They neglected to let the kids' cultures finish growing before clearing them.  Hiwot's TB culture turned positive in it's 7th week on the day that our agency wanted us to arrive in Addis.  Thankfully, I hadn't listened to them and we already had the kids home!

I immediately got on the phone to Pediatric Infectious Disease, our pediatrician, the health department and got the ball rolling with testing here.  Hiwot began treatment based on the positive culture in Ethiopia.  We sat and waited for weeks and weeks for the drug susceptibilities to come back on the organism they isolated from her cultures.  They were unable to get anything so they forwarded it to Nairobi.  Meanwhile, all of the testing we had been doing here has come up negative.  Hiwot had skin tests, chest x-rays, blood tests, bronchial washings, even a biopsy of her lymph nodes.  Everyone, including the CDC is baffled.  IF she truly had TB anywhere in her body - those tests certainly would've found it!  Hiwot is growing stronger and her symptoms are subsiding. 

Many more weeks pass and we receive the devastating news from Nairobi that Hiwot's organism is multi-drug resistant, otherwise known as MDR-TB.  Now everyone's undies are in a bunch!  Think choppers over the house, men in white suits..........

The CDC and the health department are pushing us to start treatment immediately.    I politely declined since treatment involves intravenous medications for YEARS!  Yes, you heard it - a PICC line, IV infusions that are extremely hard on the organs, and a ton of trauma to a little girl who just arrived home a couple months earlier.  Still, we have NO POSITIVE CULTURES on anything here in the US.  None of it made sense.  How could they expect that we would subject her to that type of risk based on a positive culture from a lab in Africa when the highest quality testing HERE was unable to prove anything?!  It got ugly, but luckily our Peds Infectious Disease team is amazing and offered incredible support and advocacy.
Eventually, everyone just kind of backed off.  We will never know what really happened.  It is entirely possible that she is harboring a TB infection somewhere in her body, although unlikely.  This very well might not be the end of the TB story, but we're prepared to deal with it if it rears it's head again.  For now, she's happy and healthy and sassy and we can chalk this up to one more medical mystery for our family!

1 comment:

Pamela said...

What a nightmare, Shannon. But, your mommy instincts are right on target. No one is going to advocate for your kids like you will and THANK GOD you had the gumption to get H and B out of Ethiopia ASAP. my knowledge, Hayden never had a TB test in KG. But, when she came home, she had a positive reaction. Her chest x-ray was clear for TB, but showed a really bad upper respiratory infection, and the pediatrician oreder a Quantiferon Gold test. Funny, the lab sad that QG results weren't founded in children under 5 years old, but they did it anyway. That test came back negative.

So sorry that your having to deal with this crap.

Hang in there.