Risk, Hope, and Help-Seeking: The Case of Leah

The following is an excerpt from my recent book, Spirit Children: Illness, Poverty, and Infanticide in Northern Ghana. I present Leah and the challenges that her family had while caring for her. Experience-near, ethnographic accounts provide a much needed “human” and “lived” dimension to the oft-sterile health statistics and stereotypes that are used to inform interventions. It’s important for aid programs, and other services that rely on quantitative measures to inform decision-making, to understand how their statistics are experienced.

While making his weekly rounds through a rural area, Elijah, an AfriKids fieldworker, heard rumors about an infant with hydrocephalus and a “skeletal body.” Neighbors said it surely was a spirit child and at risk for infanticide. Elijah visited Leah, the sick infant, and her family to learn more about her condition and to see if it was possible for the NGO to assist.

Elijah and I arrived at the family compound in the middle of the dry season heat. While commenting on the heat, which easily exceeded 41ºC (105ºF), Elijah casually remarked that people were really starting to suffer.

“The famine season,” I acknowledged in a low voice as we walked across an open field that during the wet season would be filled with millet all the way to the family’s compound entrance. “Some families are starting to run out of food.”

“Yes,” he replied. “The poorer families are having a hard time now. This time of year is always hard. Wait until you get to May and June. Once you survive that, you’ll be eating again.”

“Would you say this family we are visiting is poor?”

Elijah nodded his head and we soon ducked under the sun shelter outside the entrance to the compound.

Several visible signs can offer insight into a family’s economic status, for example, the physical appearance and condition of the home, the number of animals, the number of dependents, the presence of a bicycle, and even the activity levels and presence of children around the house. Other, less visible factors include the family’s health, the presence of conflict, and the extent of its social and kinship network. As Elijah and I sat down on the logs positioned in the shade, I glanced around the outside of the compound. It was in a state of disrepair, and few animals were present. It was strangely silent—even the children that usually gather around to listen were missing.

We exchanged customary greetings with Akoka, who was in his mid- to late twenties. He explained that his wife Ayampoka was fetching water. Their daughter Leah was with her, and they would return soon. When Ayampoka returned, she unwrapped the 3 kilogram (6.5 pound) three-month-old infant from her back and sat in the shade with us. When she uncovered the baby for us to see, it was difficult to conceal my shock. The child appeared to have hydrocephalus, was extremely malnourished, and lay motionless. Her body was stiff. I asked Ayampoka to tell me about her condition.

“Every day she has a hot body,” the mother told me. “And once every day for the past two months she shakes and cries out when she does that.”

“The child also had diarrhea,” the father stated. “But it’s been some time since she has passed feces.”

“Is she able to breast-feed?” I asked the mother.

“Yes, she sucks well, but I do not produce much milk anymore.”

It was obvious that the child needed to go to the hospital soon. I asked a few more questions and, aware of the rumors in the community, asked if they thought Leah was a spirit child.

“No,” replied the mother. “It’s not a spirit child.”

“Why not?”

“The family does not believe in those things,” she responded.

“Some families do not have the spirit child in their family,” Elijah added. Either families do not believe spirit children exist or believe that because they have never had a spirit child in previous generations they are not susceptible to them.

“Have you taken Leah to the health clinic?” I asked Akoka.

“Yes,” he said. “We saw a nurse, and he advised that we take Leah to the hospital as soon as possible. Ayampoka walked to the Navrongo hospital [more than 10 miles]. But she arrived at the hospital with only 12,000 cedis [US$1.30 at the time], not the 22,000 cedis required to get the medical card and see a doctor. So she brought Leah home.”

I nodded my head in silence, frustrated that she had walked so far with such a sick child and that the hospital turned them away. Later I found that Ayampoka did not know how to navigate the hospital system or advocate for herself and Leah in this unfamiliar place.

We continued to chat about Leah’s condition and said that we would return to take her to the hospital. On leaving, I found myself considering Leah’s father’s resigned appearance. I wrote in my field notes that evening, “They made one trip [to the hospital], and it appears inconceivable that they would try to go again. I am troubled by the fact that the father appeared so detached as he looked at the child. He seemed like he didn’t care if the child lived or died. The father was strangely silent.”

When thinking about Leah’s situation and reflecting on Akoka’s short responses, I found myself in frustration blaming him for failing to pursue further treatment. Couldn’t he just sell some animals or make another attempt to get Leah help? Why did he appear so fatalistic?

The archetype of the reluctant or neglectful father commonly circulates throughout the medical and development discourse in the region. It describes how fathers can be hesitant to invest in children and prefer to spend money on alcohol rather than health or education. Additionally, the practice of gatekeeping in many families, wherein mothers must ask for money or seek the support of men in the household, complicates the perceptions of the uninvested father and contributes to care-seeking delays.

I reviewed my notes later and recognized their narrowness. I realized that even if Akoka sold a fowl to get the extra money for admission to the hospital, family members would still be unable to pay for the necessary medications or feed themselves as they attended to Leah at the hospital. I began to wonder if their decision not to return to the hospital was due to their recognition of the grim reality of the situation. Had I encountered them at a point when they realized that there was nothing more they could do? Had they already spent everything they had?

Elijah and I returned to take Ayampoka and Leah to the hospital. While we were waiting for them, I spoke further with Akoka. “We went to the health center and to many herbalists,” he told me. “Even my in-laws came and saw the condition of the child. They sent another herbalist here to treat her. After the treatments, I did see some small improvement and I continued to send fowls to the herbalists [as payment].”

Families use a range of biomedical and traditional treatments and preventative methods simultaneously. Deciding who to visit depends on the type of illness, its seriousness, and recommendations from family or friends.

Undoubtedly, it is costly to attend a clinic, purchase health insurance and medications, and pay for transportation and one’s living and food requirements while caring for a family member in the hospital. Local herbalists and healers can also be expensive.

“Did you have any animals to sell to pay for treatment at the hospital?” I asked.

“I already used or sold most of my fowls to pay for Leah’s treatment,” he said. “Last year I had a sore on my leg and couldn’t farm enough food. We are currently suffering from lack of food. I want to travel to Kumasi to visit my younger brother to ask if he could help out with money or food.”

Family and social connections can work as insurance, and when one is in need appeals are made. A family’s financial resources strongly influence its help-seeking choices and can pose the most significant barrier to accessing biomedical care.

“When I realized I had nothing left that I could do, I stopped and sat down,” Leah’s father quietly remarked, indicating that when a person “sits” he or she is contemplating something serious, making a decision, or discussing a family situation with others. “I sat and said that if the child should live that is fine, if she is to die then that is fine. I have done all I can, and now I am stopping. This is now in the child’s hands.”

I nodded again. “How many children are you supporting?”

“Six. I live in this compound with my brother, but he died recently. His wife and child farm a different area, and I’m not able to feed them.”

“Was it difficult,” I asked, “knowing there was nothing more you could do for Leah?”

“Yes,” he replied, glancing down. “There’s nothing left. That is why I now have to go to my relatives in Kumasi.”

Presently Ayampoka came out of the house with Leah. We drove to the regional hospital in Bolgatanga, completed the paperwork, paid the fees, and had Leah examined by a physician. I accompanied Ayampoka and Leah into the exam room. The Russian-trained Cuban doctor, one of several that rotate through the region on humanitarian missions, examined Leah and asked her mother what was wrong. Ayampoka stated that the child had diarrhea and a hot body but offered little additional information.

My fieldwork indicated that people often place a great deal of trust in doctors and expect them to be able to determine, usually with medical instruments, what the problem is with little input on their part. The examination continued with little dialogue or discussion. Just before Leah was sent to the lab for tests, I added that she had been having convulsions on a daily basis and that the mother was unable to produce enough breast milk. The doctor took note of the convulsions while the nurse questioned the mother about feeding. “What? Have you been eating enough? You need to be sure to eat more!” she instructed. Ayampoka remained silent.

The doctor admitted Leah to the hospital, though not without some misunderstandings. Ayampoka refused to let the nurses take Leah away to begin treatment. She remarked that she did not want the child to have all the drugs we had just purchased, nor did she want so many people touching or caring for her child. The nurses repeatedly explained why they had to take Leah, but the mother continued to refuse and threatened to run away with the child. At one point, at the peak of the argument, Elijah physically blocked her attempted exit. It was the other mothers in the adjacent neonatal room, when they heard the commotion, who came to comfort Ayampoka, told her their stories, and convinced her to stay.

I present this case to bring a more human face to the health statistics of rural families, as well as their care-seeking and decision-making processes, and to highlight the reality of the related economic and transportation barriers. Solutions are frequently more complicated than eating more to induce lactation, as the nurse instructed.

This story presents a different perspective on the economic expectations of low parental investment and detachment in regions with high infant mortality and limited resources. Additionally, it is important to critically examine assumptions that cast family members as detached, fatalistic, or defensive without taking time to understand the trajectory of decisions that bring families to their current positions. When we come to a closer understanding of families’ lived experiences and their contextual circumstances, a picture emerges that can demonstrate greater complexity and variation in the way families respond to sick or disabled children.

At the time of Leah’s birth and the recognition of her condition, which occurred during the first weeks of the dry season, the family was already facing a grim reality. Despite the poor harvest of the previous season and the family’s limited means, it invested considerable resources as it searched for treatments and attempted to access the hospital with whatever resources remained. Throughout this book we will see similar cases in which families continue to engage in help seeking knowing there is a strong possibility that they will be unsuccessful or, in the case of spirit children, that the administration of a costly and sometimes fatal concoction will be inevitable.

Families in the region know that children with Leah’s condition rarely survive, but Leah’s family, like others I encountered, maintained the hope that she would improve. Her family took a significant risk and expended every resource despite the odds.

Leah died soon after her admission to the hospital.

Want more? Check out my book “Spirit Children” here and my other essays here

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