When the phone rang at 11:07 a.m. and the caller ID flashed “Private” on the screen, I was not surprised to hear the pediatrician’s voice saying hello. I had just been on the phone with her office to ask for vaccination info for camp forms. So although a call directly from the doctor herself was not necessary, it was not alarming.
“Hi there,” she said softly, “I need to talk to you about Masha’s lab results.”
Instantly I felt sick to my stomach and braced myself to hear her say that the CBC was bad and Masha has Leukemia.
“Remember I ordered an HIV screen because she is adopted? It came back positive.”
She continued on... explaining antibodies tests and actual virus tests... Masha’s blood had failed the virus test even though the antibody test came back negative. Could I take her into the hospital for further testing... here is the phone number... they have her records and they are waiting for her.
My composure stayed steady on the phone as my brain repeated over and over, “It’s not a death sentence anymore, it’s not a death sentence anymore, it’s not a death sentence anymore.”
As an eighties girl, I was wide awake when AIDS made its public debut. Within a couple years the disease traveled from the drug and homosexual male communities into dentists’ offices and blood transfusions. We were all appropriately terrified of the mysterious disease that had no cure and eventually ended in death. Those who had AIDS or its precursor HIV became pariahs.
Before we hung up, our pediatrician gave me one small drop of hope in the words, false positive. Maybe, just maybe, this was all a big mistake. I pushed the call disconnect button and burst into tears.
It is doubtful my husband understood much of what I sobbed into his ear but the HIV part got through to him and he was home with me within a half hour. Together we cried and wondered how on earth this could be possible. She came from a wealthy family who had other children before and after her, so it is doubtful it was transferred to her perinatally. She had never been in surgery so a transfusion was unlikely. What other possibility was there... bad vaccination practices at the orphanage?
Jumbled. That is how the thoughts come in times like this. I remembered a bad bite on Masha’s back last year... the dental indentations had looked suspiciously like Kimani’s mouthful of teeth and now I worried if HIV could be transmitted through a human bite. Maybe it wasn’t Kimani who bit her... maybe I would have to tell the school and they would tell the other parents... and as if Down syndrome were not enough to get in the way of her up-and-coming social life, surely HIV would be. Who in their right mind invites Typhoid Mary to their kid’s birthday party? Kimani had meningitis, Masha has HIV, and what’s on the agenda for Autumn... Leukemia? WTF? This is why I avoided getting their labs done... this is the day I dreaded. The enemy I can’t see is the one who has had the most power to destroy my babies.
My best friend was at my house in a matter of moments after my call to her. She would babysit for us so that when Masha came home from school, her father and I could whisk her off to the hospital to meet with the infectious disease specialist. Putting her in her carseat I started crying all over again... she just seems so strong and healthy... She asked me if I was hurt and she leaned in to kiss me. It is ok to kiss her I reminded myself... HIV is not a booger disease and a little bit of runny nose or wet lips was not going to make me get it. Oh my god, I don’t want to be afraid to love on my daughter.
The little old lady “bug” doctor, the same one who hovered over Kimani in PICU trying to pinpoint the force that was sickening her week after week, walked into the room and said, “Well hello. I know you but who is this little one?” Introductions and explanations were made and then she reviewed Masha’s translated medical record. There it was. Anemia. The doctor explained that in some countries blood transfusions are given to anemic children.
The needle jumped up a notch... this whole time bits and pieces of information pushed the line of fear up or down on the graph in my heart.
The doctor explained all of the tests given for HIV, and that there are two different strains and that Masha had actually not yet been tested for the virus itself (the needle dropped down a notch). In fact they would be drawing blood to do that test right after our meeting. The results would take a week and she herself would call us to deliver them. She took my hands in her cool, bumpy grandmotherish hands and looked me in the eyes. “Deep in my heart I think this could be a false-positive but if it is not, you must remember that it is not the end of the world for her. This is a chronic disease and we can treat it.” I felt my cheek muscle tense up and wiggle but I did not cry. I held on to those two words that might possibly erase this whole thing... false positive.
For the next couple of days I couldn’t help but remember how I'd had a similar bit of hope while pregnant with Kimani. They didn’t know for sure if she had Down syndrome, and I had held fast to the word “maybe.” And then there was the hope that the meningitis had not caused brain damage...
On Friday, Dr. L. called with the good news that Masha is fine. Her specialized blood test for the Human Immunodeficiency virus was negative. This chapter has a happy ending.
Alt Summit NYC 2013 - Tomorrow I head to ALT Summit NYC. For those of you not familiar with ALT, it is a highly acclaimed (and super fabulous) blogging conference that is held in ...