Difficult Choices

Pediatrics in the United States is generally pretty clear-cut when it comes to children in critical condition. You do what it takes to save them, whether by advanced surgical techniques, intubation and ventilation, or expensive medications. It’s generally only the extraordinary cases—genetic abnormalities, comatose children requiring advanced life-sustaining measures for prolonged periods of time, extremely premature infants, metastatic malignancies--where one may entertain the possibility that the right course of action is to allow a child to die.

By contrast, this is a question that must be asked all too frequently at hospitals in the developing world, particularly in extremely resource-limited areas like ours. In the States, when a premature infant is born, the most basic of measures is to place the baby into an incubator where the infant can be kept warm. Here in Nyankunde, the power requirements of one incubator are apparently so great that it can monopolize the electricity produced by our generator, electricity that might be needed for oxygen concentrators or for lights in the operating room. Similarly, when a child (or adult, for that matter) stops breathing, we are faced with the question of whether the patient should be resuscitated, as our only operational ventilators are in the operating rooms.

Recently this issue became particularly concrete. A child—probably around 1 year old—was admitted to our unit with cerebral malaria. The child was comatose, responding only to pain. The exam was suggestive of severe anemia, and the hemoglobin was indeed low, so along with IV quinine, the child received a transfusion. The next morning, however, it was quickly evident that the patient had further deteriorated. His right pupil was dilated while his left was normal. We call this a “blown pupil”—perhaps one of the most ominous physical findings in all of medicine. It means that the pressure is so great inside the skull that the brain is starting to herniate—that is, to be pushed out of the skull—leading to compression of the cranial nerves that control pupillary constriction and later to compression of the part of the brain that controls breathing. In other words, the patient was in the process of dying.

Generally, with cerebral malaria patients, we treat with quinine and, if necessary, transfusions, and we pray that the patient turns around. With this patient, however, the alternatives were very clear. We could watch the patient herniate and die, or we could try to relieve the intracranial pressure. Lacking medicines like mannitol that can reduce cerebral edema, the latter would require cutting a hole in the skull to allow the brain to expand without further herniation. We were not aware of any studies of craniotomy as a treatment for cerebral malaria, and without internet access at the hospital, we did not have the time to investigate. Lindsey Cooper, the attending pediatrician, and I spoke with Warren Cooper, the most experienced surgeon at our hospital (and perhaps one of the more experienced surgeons in Africa). He was skeptical but agreed to proceed if the family was in agreement. After multiple meetings with the family, laying out the risks and possible benefits of surgery, the decision was made to proceed.

The child was quickly taken to the operating room. As Warren got to work, exposing the skull, drilling a burr hole, then expanding the opening to the size of a quarter, Lindsey and I watched the heart rate on the monitor. For the first half of the operation, the heart rate was high—above 200—but then it started to drop, falling below 100 within minutes. We checked to see if the child was still breathing. He was not. Lindsey started breathing for the child with a bag mask. With the brain exposed, Warren announced that there was no evidence of significant brain swelling. He quickly closed the incision and the operation was over. The child’s heart rate had now gone to zero—asystole. The child was dead. The question was: Should we attempt to bring the child back to life? In general here at Nyankunde, the answer to this question is no. The efforts are often futile; if the patient is partially resuscitated, we don’t have ventilators to breath for them; and we don’t want to sacrifice the care of other patients to provide heroic but usually unsuccessful care.

This child was an exception, however. We had already decided to push the boundaries of what was possible at our hospital with the craniotomy. We decided to again push the boundaries. Perhaps these boundaries needed to be pushed, after all. We started chest compressions, intubated the child, and gave epinephrine. The heart rate reappeared and started to rise. Still the child wasn’t breathing, but from a cardiac standpoint, he was alive. We decided to keep breathing for the patient for a little longer, hoping that he would start breathing again. After about 30 minutes, he did indeed start breathing again, and a living—albeit very tenuously living—child was brought back to his parents. We were very happy that we had taken the risk and tried to resuscitate the child.

About an hour later, I was informed that the child had died. My heart sank. Had we made a mistake? I don’t think we did. We gave our very best efforts to save the life of a child that, in the absence of a miracle, was at the verge of death. We successfully resuscitated this child. Our hope was that he would remain alive and recover. He did not, but he died in the arms of his parents, and not on the operating table. That, in this case, was a small victory.

CME Nyankunde is not ready for resuscitation efforts like this to become the norm rather than the exception. Our intensive care resources are too basic. At the same time, there have been recent studies out of Malawi suggesting that if children with cerebral malaria can be supported with ventilators during the most critical period of their illness, they might be able to make a full recovery. And at a more personal level, the Congolese in and around Nyankunde deserve the best care that we can give them. When I think about what level of care I would expect for Luke or Miriam in the event that they were to have cerebral malaria—that is the care that Congolese children deserve. My prayer is that God would give us a vision of what is possible--and the hope, wisdom, love and passion for justice that we need to make this vision a reality.