When Families Can’t Handle
Their Child’s Chronic Care

Photo by Graham Ramsay Ellen Rothman

The grandmother seemed unconcerned as she walked into the ER with her infant grandson. In contrast, the nurse accompanying her was rushing toward the bed, hurrying to set up monitors and oxygen.

The grandmother casually stepped back as the infant, now lying on the gurney, grunted with the effort of each breath. A tiny feeding tube protruded from his nose, and the free end was taped to his cheek. He had fine, black hair that partially covered low-set ears. His pointy chin receded into his tiny jaw. His right hand had only four fingers—a thumb, a fused second and third finger that ended in two distinct fingertips, an absent fourth finger, and a tiny pinky. His toes had the same configuration.

Who is this kid? I thought to myself as I put my stethoscope to his chest. I have been working in a small town on the Navajo Reservation for the past four years. Since we are the only emergency room in a 70-mile radius, the members of our 12-physician group tend to know our medically complex community members very well. But this was a child I didn’t recognize.

Fortunately, the grandmother had brought the hospital discharge papers with her. Lane had been discharged from a Phoenix intensive-care unit just two days earlier. His mother had an unidentified genetic syndrome and was mentally retarded. Lane had had a prolonged neonatal ICU course and was unable to suckle. On examination I noticed a hernia that was “to be corrected as an outpatient,” based on his hospital papers. He was discharged on a feeding pump and an apnea monitor that would sound an alarm if he stopped breathing.

Home Care Fails
The grandmother said that Lane had done well the day previously, but overnight she heard him choke on the feeding pump. She thought he was having trouble breathing and began to give rescue breaths as she had been taught in her CPR class at the hospital. The monitor was beeping too frequently, so she had turned it off. She turned off the feeding pump as well, and then when the infant seemed a bit better, she went back to sleep. The next day, she again noted that the infant had difficulty breathing, finally bringing him to the ER.

There, with oxygen, fluids, and antibiotics, Lane’s breathing improved. We flew him in a medical transport back to Phoenix, 300 miles away. He remained in the hospital for another month. After that discharge, he returned home and again developed respiratory distress within a few days of arrival. We emergently inserted a breathing tube in the ER before flying him back to Phoenix, where he had another prolonged hospitalization.

Resource Limitations
A few weeks later, Dakota joined my practice. She was born prematurely to a teen mother who had received no prenatal care. The mother had walked into our clinic, and, while waiting to be triaged, went to the restroom and delivered a baby girl, 11 weeks before her due date. We inserted a breathing tube into Dakota and flew her to Phoenix. But she was left with profound respiratory disease of prematurity.

Dakota’s mother arrived at my clinic several months later with a sheaf of prescriptions in one hand and the infant in the other. The grandmother trailed slightly behind, rolling the portable oxygen tank. Dakota was still on nine medications, an apnea monitor, and oxygen. She required diuretics and oxygen to facilitate her breathing. We didn’t stock several of the medications the NICU had prescribed—they would need to be ordered, which would take several days. Dakota was also down to her last few bottles of preemie formula, which the federal WIC (Women, Infants, and Children) program in town didn’t carry. At home, Dakota was cared for by her rebellious teenage mother and by her grandmother, who also cared for her own six children.

“I hope you don’t think poorly of me,” Dakota’s grandfather said as they left the office, “but we just can’t drive 30 miles to pick up her oxygen tanks. We don’t have the gas money, and this is our last tank.” The medical supplies company the hospital had selected did not deliver to our area. The family was expected to drive 30 miles out of town to the junction of two rural highways to meet the delivery truck.

Initially, I was upset that these children were sent home with so little preparation. What were the physicians in Phoenix thinking? With the limited resources in our community, it is challenging to provide adequate care for our patients. But without advanced planning, it is nearly impossible.

I thought back to my years working as a resident in the Boston hospitals. I had discharged many complicated patients and worked hard to ensure a smooth transition. At the time, I thought I anticipated the major challenges. Yet the discharge effectively ended my relationship with a patient, and I never learned what happened when the patient finally arrived home. I, too, might have discharged a Lane or a Dakota. 

—Ellen Rothman, HMS ’98,
practices in northern Arizona
on the Navajo Reservation.

The opinions expressed in this column are not necessarily those of Harvard Medical School, its affiliated institutions, or Harvard University.

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