In Every Heart There Lives a Tear
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The chief of pediatric critical care at St. I had really thought that I would get her a feeding tube and a tracheotomy, and she would just get up, and we would be good. A surgeon at St. Nailah, who spent all her waking hours in the hospital, became friendly with some of the nurses, who told her that the surgeon who performed the tracheotomy had been ostracized by his colleagues. Nailah and Marvin slept at a house that the hospital owned, until, after three months, they were told they needed to move on, to make room for other families.
They took a cab to a Motel 6.
For the next three months, they stayed at whatever motel had the best weekly rate. They finally stopped calling. Her skin became more elastic, her limbs and face became less swollen, and her blood pressure steadied. Nailah said that the cost of care was roughly a hundred and fifty thousand dollars a week. But there is a different tradition that looks much more to the body. The concept is also treated with skepticism in Japan, owing in part to distrust of medical authority. At St. She wondered if her daughter found the songs calming. Her hands are placed on rolled cloths, to keep them from contracting into fists.
Two seconds later, Jahi cocks her right wrist. Move your hand so we can see it. Move it hard. Her face is expressionless and still. After fifteen seconds, she wiggles her toes.
Seven months after moving to New Jersey, Jahi began menstruating. Is there another diagnosis? In late August, , Jahi was released from St. Her discharge diagnosis was brain death. She moved into a two-bedroom apartment that Nailah and Marvin had rented in a colorless condominium complex near New Brunswick. They slept on an air mattress on the floor, and Jordyn, who had just moved to New Jersey, to begin first grade, slept on the couch. Jahi had the brightest room, with a large window overlooking the parking lot.
Nurses, paid for by Medicaid, provided twenty-four-hour care, in eight-hour shifts. Speak clearly, softly, slowly.
Not long after the family moved in, two detectives and a patrol officer showed up at the apartment. The Franklin Township Police Detective Bureau had received an anonymous tip that there was a dead body in the house.
The cops concluded that there was no criminal activity and left, but the nurse on duty was rattled, and she quit. Nailah had for months been flooded by e-mails and Facebook messages accusing her of child abuse or of exploiting her daughter for money. Strangers started a petition on Change. Nailah read the Bible more than she ever had, and she tried to entertain the idea that God had chosen her to suffer this way because she was resilient enough to endure it.
But large areas of her cerebrum, which mediates consciousness, language, and voluntary movements, were structurally intact. Machado also performed a test that measures the interplay between the sympathetic and parasympathetic nervous systems, a relationship that regulates states of arousal and rest.
Everyone is so proud of you. Alan Shewmon, who had just retired as the chief of the neurology department at Olive View-U. Coimbra, called ischemic penumbra. If blood was still flowing to parts of the brain, however slowly, then, in theory, some degree of recovery could be possible. Shewmon has given a diagnosis of brain death to roughly two hundred people. He is measured, formal, and precise. He pulled a desk chair next to her bed and, with a notepad in his hand, watched her for six hours. Jahi did not respond to his instructions to move her limbs, a fact that Shewmon did not find particularly revealing.
He had analyzed the videos that Nailah had recorded, and they suggested to him that Jahi was in a minimally conscious state, a condition in which patients are partly or intermittently aware of themselves and their environment.
Selected by Harold Wood
After Shewmon left, Nailah took more videos. Shewmon eventually analyzed forty-nine videos containing a hundred and ninety-three commands and six hundred and sixty-eight movements. This cannot be reasonably explained by chance. Then she bent her pinkie. Four seconds later, Jahi moved her middle finger again.
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He went to medical school, in , and then specialized in neurology, because he wanted to understand the relationship between the mind and the brain. For the next fifteen years, he believed in and defended the notion of brain death, but in the early nineties he began to feel increasingly troubled by the concept. In , Shewmon was asked to consult on the case of a fourteen-year-old boy who, after falling off the hood of a moving car, had been declared brain-dead.
He survived for sixty-three days and began puberty. Shewmon began researching similar cases, and found a hundred and seventy-five people, many of whom were children or teen-agers, who lived for months or years after they were legally dead. The longest survivor was a boy who had been declared dead after contracting meningitis, when he was four. His heart beat for twenty more years, during which time he grew proportionally and recovered from minor wounds and infections, even though he had no identifiable brain structure and the outside of his brain had calcified.
In a personal note appended to the end of the report, the chairman of the council, Edmund Pellegrino, expressed regret regarding the lack of empirical precision. In , after Nailah filed her taxes, her accountant called to tell her that her submission had been rejected by the I. She decided not to fight the I.
Nailah sold her house in Oakland to pay her rent in New Jersey. She almost never left the apartment. Consumed by guilt for having urged Jahi to have her tonsils removed, she was given a diagnosis of depression. But this is one situation that I cannot adapt to. The hospital argued that deceased bodies do not have legal standing to sue. Dolan submitted video recordings of Jahi and declarations from Machado, three New Jersey doctors who had examined her, and Shewmon, who concluded that Jahi had fulfilled the requirements of brain death at the time of her diagnosis but no longer did.
The hospital hired its own medical experts. Thomas Nakagawa, who wrote the guidelines for pediatric brain death, said that the only accepted criteria for brain death were those stipulated by the guidelines. MRI scans, the heart-rate analysis, the videos of movement, and the evidence of menstruation were not relevant to the criteria. A similar debate unfolded in , when an Ethiopian college student, Aden Hailu, was declared brain-dead at a hospital in Nevada after exploratory surgery for stomach pain. Truog, the director of the Center of Bioethics at Harvard, said that once, when he gave an academic talk on brain death, he described it as a catastrophic brain injury, rather than death.
What you are doing is immoral: to put doubts in the minds of people about a practice that is saving countless lives.
Location of the Heart
In order to support public trust in the scientific enterprise, I guess I feel that the medical profession is always going to be better off, in the long run, if we speak honestly and truthfully about what we know. I believe it is a morally virtuous thing to do and we ought to facilitate it. We are doing the right thing for the wrong reasons.
Although Jahi has come to represent a different way of defining life, her family is not sure that they would keep her on a ventilator if she still fulfilled the expectations for brain death. Do you want to live? Are you suffering? Because many days I do want to die. But then I see her every day, trying her best. Last December, I visited Nailah at her apartment, and she said that she had begun to feel more hopeful. You will be in the hospital for about the first week.
You will usually be in the intensive care unit ICU until your vital signs are stable. You will move to the regular nursing floor to continue your recovery before you go home. During your hospital stay, you may need medicines for nausea, pain, and discomfort. Plan to have someone drive you home.
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It may not be safe for you to start driving right away. Ask your provider when you can drive again. It may had open-heart surgery, it may take a few months to fully regain your energy while your body is healing.