Disclosure

Tafadzwa Kasambira
Silver Spring, Maryland

 

Not long before she discovered her diagnosis, Rachel felt a flutter in her chest and a sense that the air seeping through her lungs was more agitated, as if moving through a maze. She had that feeling of foreboding you get as you slip into poor health―a sense of imbalance, like teetering on the edge of wellness. Two weeks later, her mother decided to take her to  a doctor. In the interim, her lungs were consumed by a short, dry cough, persistent and pressing, refusing to set her free.

Rachel was admitted to the hospital. When the pediatric resident who admitted her called me, the pediatric infectious diseases fellow on duty that day, she had apparently already been diagnosed in the Emergency Room: a sixteen-year-old African-American female with suspected pneumonia. In the midst of a busy day, I welcomed the prospect of a simple pneumonia case.

When I went to see her, Rachel did not look ill. Her mother hovered by the bedside while I interviewed the teenager, preferring to stand while we spoke. I noted fleetingly the girl’s calmness, her easy breathing – all reassuring signs for someone with suspected respiratory problems. I was concerned, though, that she needed extra oxygen delivered to her lungs through nasal prongs. In constant movement, her mother, a woman much smaller than her daughter, paced about the room clutching her own chest with both arms as if she was cold, adding to her daughter’s curt but complete answers to my questions.

Rachel explained that she had been feeling fine until a few weeks ago. The continuous cough bothered her the most. She had experienced occasional fevers in the previous two weeks, but no other symptoms that might have caused her to worry. Rachel’s mother concurred. She did not smoke and nobody around her at home was ill. “Are you sexually active?” I later asked when her mother was not in the room. “No,” she said. Her lungs emitted faint but harsh wheezing sounds when I listened with a stethoscope.

A list of possible diagnoses took shape in my mind, the most likely being what the Emergency Room team had thought, community-acquired pneumonia. This is a fairly common lung infection that can sicken healthy children.. After promising the family to do our best to find out what was wrong with Rachel, I went to look at her chest X-ray. Rachel’s need for extra oxygen continued to nag at me.

There’s a  saying in medicine: “Common things are common.”  The rarities, ‘zebras,’ are always elusive, though the appearance of these infrequent phenomena in the media may  lead one to think that such  rare conditions are seen by physicians all the time. Rarely, unexpected diagnoses, like clandestine family secrets buried beneath unfurling layers of misdirection, can announce themselves spectacularly.

The chest X-ray suggested a type of pneumonia not usually seen in healthy children.  A shower of pale white raindrops appeared throughout her lungs, most likely representing millions of miniscule, discrete nodules. It was the kind of discovery that makes one’s heart race a bit quicker, a key to one of those diagnoses that haunt clinicians when a child’s wellbeing is at stake.

We needed to confirm our suspicions. After Rachel had been sitting idly in the hospital for more than a day, on antibiotics (just in case) and still on extra oxygen, we suggested to the pediatric team that a more invasive lung test be conducted with bronchoscopy. A special tube was snaked through her nostrils, into the vibrant darkness of the larynx, through the vocal cords and into the lungs, where fluid samples could be collected and sent to the lab for analysis.

Under the microscope, the sample lacked any of the pale pink or purple stained pellets that suggest the presence of bacteria. There were no characteristic fractal beaded tree branches of fungi, no swollen oval bullets suggestive of the mycobacteria that cause tuberculosis.

The laboratory staff conducted one more test. They took human defense cells — antibodies — that had been linked to a chemical that fluoresces if the test is positive, and mixed them with fluid from deep inside Rachel’s lungs. If these direct fluorescent antibodies found their complementary match, a special cell marker present in her lung fluid, the two would bind like puzzle pieces.

Under the microscope, they lit up like radioactivity. Rachel was suffering from pneumonia caused by a fungus called Pneumocystis jirovecii. The unique aspect of the fungus is that it almost exclusively infects people with depressed immune systems.

Hoping our suspicions were wrong, we tested Rachel for the human immunodeficiency virus, or HIV. Her test was positive. She had acquired immunodeficiency syndrome (AIDS), the result of HIV wrecking her immune system.

The seriousness of Rachel’s condition leaped several levels in an instant.The pediatric team contacted an HIV infection counselor and informed the physicians at the HIV clinic that they would soon have a new patient. The first and most difficult task we were faced with, though, was disclosing her infection status to Rachel. No formula exists for telling a sixteen-year-old girl that she has an incurable infection. The questions most important to her would probably be when and how the virus had first entered her body.

When we spoke with her about the results of her HIV test, her demeanor was puzzling. I had expected her to collapse in a heap of emotions or maybe maintain a stunned silence. She displayed none of these reactions. Rachel’s facial expression did not change nor did words fail her. She nodded and accepted (in words, at least) the news with a maturity that belied her age.

Again, Rachel insisted that she had no past sexual experiences, and that she had never received blood transfusions or used intravenous drugs. The only other feasible way Rachel could have contracted the virus was as an infant.

The spotlight turned to Rachel’s mother. This focus unleashed a burst of revelations that were astonishing, filling that small hospital room with echoes of the past that she perhaps felt, minutes before we arrived, would remain forever shrouded in secrecy. The mother admitted that she was herself infected with HIV, and had been living with the virus in her body for the past eighteen years. Until that day, no one had known about her diagnosis. She had kept the news hidden from her family, including her children. Thirteen years before, she began to take drugs made to combat the virus in an attempt to take control of her health. Sadly, her children had missed the chance to be born unexposed to HIV, which might have been possible had the anti-HIV drugs been present in their mother’s bloodstream while she was pregnant with them.

Rachel listened to this confession in silence. Her face remained stony and did not betray her emotions. One can only imagine how she must have felt, or what she had already suspected, as she watched this new and unchartered detour her life was taking. Her own expectations of the future were now tempered, altered, and newly amorphous. Our team was not privy to the private conversation she had with her mother after we left the room, if one occurred at all.

Why would a parent not disclose her own HIV diagnosis to her at-risk child, particularly when that child might be infected herself? Because we didn’t discuss with Rachel’s mother the underlying reasons for her prolonged silence, one is only left to speculate.

What happens after disclosure, in the long-term? For each family, the answer is different. In Rachel’s case, we unfortunately had no idea. Her mother wanted Rachel to begin the anti-HIV drugs that she herself had been taking for the last thirteen years, but for reasons she didn’t expand upon, she chose to have Rachel managed at an HIV clinic elsewhere. Perhaps the way her secret had been revealed didn’t sit well with her or was too painful or embarrassing. Whatever her mother’s reasons, the decision was hers to make, and Rachel was discharged from the hospital with a medicine for her pneumonia and follow-up instructions, including an abundance of pertinent information on HIV and the necessary clinic contact information. That was the last we heard from them.

For a child navigating his or her way through childhood, adolescence, and young adulthood, the burden of the sick role always becomes, at some point, unwelcome. Enjoying life like any normal child is a common desire for all kids. Parents like Rachel’s mother may interpret HIV disclosure as a denial of this shot at normalcy. But one’s autonomy, even for a child, is paramount; in some dire health circumstances, it is all some children have. We cannot fully tell the extent of resilience that develops in a child who knows their own HIV status, but for most, it is arguably better to have this knowledge than not.

 

Further Reading

“Guideline on HIV disclosure counseling for children up to 12 years of age,” Geneva: World Health Organization (2011)
“Disclosure of illness status to children and adolescents to children with HIV infection,” American Academy of Pediatrics, Committee on Pediatric AIDS, Pediatrics103 (1999):164-166 [Policy Statement reaffirmed and retired: Pediatrics129 (2012): e1103]

 


 

TAFADZWA KASAMBIRA, MD, MPH, received his degrees in medicine and public health from Tufts University School of Medicine.  He completed his pediatric residency training at Harvard University/Boston University in 2005 and a fellowship in Pediatric Infectious Diseases at Johns Hopkins University in 2008.  He has worked as a Medical Officer at the US Food and Drug Administration and is currently pursuing a Master of Arts degree in Science Writing at Johns Hopkins.  He is the author of several published peer-reviewed articles and nonfiction pieces.