The Enabling Side of a Disabled Child

Photo by Graham Ramsay Ellen Rothman

Berdina first felt that something was wrong with her unborn child early in her pregnancy. When she was seven months pregnant, her baby was noted to be unusually small. Although she was instructed to return for an ultrasound to check the baby’s health, it was more than a month until she finally did so. Since her belly had not grown since the prior visit, she was transferred to a local hospital for further evaluation.

When Berdina arrived at the hospital, the doctors performed an emergency C-section to deliver Alexander. His heart rate was dangerously low, and he did not breathe on his own. Although nearly full term, he weighed less than five pounds. He was flown to the closest neonatal intensive care unit, more than 200 miles away. Alexander spent the next months hovering on the brink of death. Several times the doctors recommended that Berdina withdraw life support. Miraculously, Alexander survived. Yet when the doctors performed a CT scan of his brain, they found that he had virtually no surviving cortex, the outer layer of the brain responsible for higher cognitive function.

The Myth of Disability
In the Navajo Nation, where I have worked as a pediatrician for the past five years, we find surprisingly high rates of disability, including rare genetic anomalies. In Navajo tradition, people with disabilities and young children share a unique bond with the Holy People. All children are born with this relationship intact. But, as developmentally normal children begin to speak, they gradually lose this connection. For people with disabilities, this connection to the Holy People never wanes.

A medicine man recently ex-plained to me the mythical basis for this connection between the Holy People and the disabled. A long time ago, he said, the Navajo people lived in a hogan. They kept their children with disabilities in a shade house out in the back. Occasionally, they threw scraps of food to the children in the shade house. Among them, there was one small boy. One day, this boy led the children from the shade house at dawn. Together, they journeyed to the east toward the sunrise and returned late in the evening. The Navajo people were puzzled, but they thought nothing more of the unusual journey. The following morning, the little boy again led the children from the shade house. This time they journeyed to the south. The following morning, they traveled to the west.

Now the Navajo people became very curious. A man from the village decided to follow the children secretly. The next morning, the children rose early and walked toward the north. The man saw that the children were joyous and playful. They had nuts and fruit to eat and plenty of water to drink. In the afternoon, they reached a lake. The children began to dance on the shore. As the Navajo man watched, the Holy People came across the lake. The children reached out their arms and the Holy People took them away, never to be seen again. All that was left was pottery shards on the shore. The little boy returned as a dove and told the Navajo people that they should cherish people with disabilities, for they have much to teach.

A Different Journey
This story acknowledges the primal instinct to exile people with disabilities. Indeed, the Navajo people could not hear the boy’s message until he returned as a dove. This story also teaches that the humanity in the children must be sought out and discovered. The Navajo did not understand the children until they followed them and studied their activities. The little boy leaves this more important lesson unspoken.

I met Alexander for the first time the day after he returned home from the NICU. At three months old, he weighed less than the average newborn. His skin had an olive cast caused by liver failure from months of intravenous nutrition. The soft bony plates of his skull still visibly overlapped, indicating that the brain had not grown to fill in the space below and stretch the skull into place. He had a feeding tube inserted into his stomach because he could not eat.

Berdina was ecstatic to be back at home. She held Alexander tenderly and showed me the tiny pacifier she used to teach him to suckle. She saw smiles. She saw recognition. Over the next months, Alexander continued to improve. He began to take some nourishment by mouth. His liver failure resolved and his skin lost the olive cast, returning to a more natural almond tone. His body filled out, and he acquired baby fat. But still his brain did not grow.

As a physician, I focused on keeping Alexander healthy—testing his urine and blood, prescribing supplemental formula to help him grow, referring to programs that provide early education. For me, the work was in the differences, the abnormalities. But Berdina helped me to see Alexander through her own eyes—to cherish the smiles I couldn’t see, to applaud the accomplishments I wasn’t there to witness. Alexander never learned to eat, to speak, to sit. But Berdina led me to appreciate the value of Alexander’s hidden journey.

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

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

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