Annie had lived most of her seven years on an American Indian reservation in New Mexico, and her trip to Boston marked her first visit to a major city. Her mother expressed some anxiety about the accommodations set up for them on the 18th floor of an apartment building, asking, "Is it safe to be up this high?” After all, the tallest building in Annie’s hometown stood only two stories tall. That particular worry afforded a brief distraction from the more serious issue at hand.

The Indian Health Service had sent Annie and her mom to await a pulmonary transplant at Children’s Hospital. She had “moderately severe” cystic fibrosis, and a pulmonary transplant offered her the only realistic chance for long-term survival. As the psychologist consulting to the solid-organ transplant team, I felt a certain irony as I went to evaluate Annie. The recessive gene that caused her cystic fibrosis originated in Northern Europe and almost certainly came from European-American ancestors generations earlier—a kind of genetic time bomb that a bunch of current-day European Americans would soon try to fix.

The medical and psychological evaluations went well. Despite experiencing respiratory arrest at a community hospital near the reservation a month earlier, Annie presented as a friendly, engaging girl with good cognitive and emotional functioning. She participated cooperatively in lab tests and treatments, took her medicines without complaint and interacted well with the staff and other children on the hospital ward. Her mom cared for her very effectively and seemed well able to manage the antirejection protocols that would follow surgical transplantation. All we needed now was a donor lung of appropriate size and tissue type.

An anoxic event?

Two weeks went by, before an urgent call came in from the charge nurse. The staff feared that Annie had decompensated, or “possibly suffered some sort of anoxic event leading to hallucinations or dementia.” She had told her primary-care nurse that “the dead lady” had visited her “again last night.” Arriving at Annie’s hospital room, I found her sitting in bed playing with a plush toy bear while the television droned in the background. We chatted for a while, and she seemed very much the same child I’d met a few weeks earlier. I asked if anything interesting happened last night, and she smiled broadly, telling me, “Yes. Dead lady hot-ta came again, but I didn’t take the food. I just pretended I didn’t hear her, like mommy told me.”

I realized that I needed to know more about Annie’s culture to assess the situation, and went looking for her mother. When I asked about “dead lady hot-ta,” Annie’s mom beamed and told me an amazing story. Annie had told her mother about a dream involving an elderly woman who wore some distinctive articles of clothing. Not knowing what to make of the dream, the mother telephoned her own mother back on the reservation. Based on the description Annie had given her mother, the grandmother immediately identified “hot-ta” (maternal grandmother in the Zuni language) as her own mother, Annie’s great grandmother, who had died while Annie’s mother was still an infant.

An auspicious omen

The family viewed this nocturnal visit as an auspicious omen, demonstrating that a loving ancestor had come to watch over Annie at this difficult time, but special caution applied. Grandmothers from most cultures apparently like to offer food, but accepting food from a dead person, even in a dream, means that your spirit must go with them. Thus, mother had to explain to Annie how she could avoid taking the food while not offending and driving away the protective spirit. Accomplishing this meant either politely saying, "No thank you,” or simply pretending not to hear the offer.

What had first seemed a sign of pathology through one cultural lens revealed itself as spiritual support from a different perspective. Annie had heard the lesson well, felt comforted by the dream and now knew she had protective spiritual oversight without risk. I invited Annie’s mother to explain the family’s perspective at rounds. The team’s interest and amazed response helped Annie’s mother to feel a new pride and emotional connection to the team.

The powerful teaching message had important radiating effects. The medical staff began to ask questions and listen to the family differently, with an emphasis on accommodating their cultural needs rather than simply assuming they would blend in with the assumptions and expectations of a European-American-dominated health-care structure. We must remain ever mindful of the narrow scope represented in our own cultures, and always open to taking the perspective of others we hope to serve.

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