Suffering During the Waiting Game
By james pedrick
April 21, 2010
Two children who have never met before lie side-by-side, eyes closed, hardly moving. They are from different families, distant villages, but what brings them together in this tiny hospital room with three beds and barely any room to walk is the rampant, killer disease malaria.
Their mothers, relatives and a few siblings sit in the shade outside the one-room building. Their fathers sit in the dim room at the head of each bed, with alternating looks of panic, calm, grief and fear flashing across their faces.
Justina, age 11
Diolono Sona sits with one hand cradling his daughter’s head, the other hand lying helplessly in his lap. Justina, age 11, has awoken from a coma, but can only slowly blink her eyelids. She has cerebral malaria, the worst stage of malaria when the parasite has invaded the brain.
“Justina is suffering from strong headache, and she is also suffering from stomachache. Her neck is stuck and she can’t move the backbone, it is also stuck. She can’t stand and she can’t sit,” her father says. “She has been ill for four weeks now.”
As they live far away from the hospital, Justina’s parents first consulted a local healer. When Justina still didn’t get better, with no phones or easy means of communication, her father left his fields and his home to make the long journey to the hospital in person.
“We stay very far from this place,” he explains. “When my daughter fell sick, I came to the hospital, I reported to the nurse and then the nurse sent the ambulance to the place where we live. That’s when Justina was taken from home to the hospital.”
Joao Manuel Donquene is the chief of this hospital, a nurse who does everything from delivering babies, prescribing basic medicines, monitoring patients and inserting IVs.
“The time that Justina came to the hospital she was unconscious,” Donquene says. “Justina has been in the hospital for six days. We can see that she is improving. She has finished with quinine and now she is just taking antibiotics.”
The nurse’s words of improvement do little to comfort Justina’s parents. Her mother, Isabel, looks as distressed as her father. “I feel sad because my daughter is sick,” she says. “I would love to see her getting better because when she is sick, I am also suffering.”
Costa, age 10
Next to Justina lies 10-year-old Costa Eduardo.
Costa’s father, Alexandre, holds him as he tosses around, feverishly throwing off the thin blanket. As soon as Costa starts shivering, his father wraps the blanket tightly around him.
“Costa’s got a high fever, a strong headache, he is also suffering from a stomachache and his neck is stuck,” Alexandre says. “He fell sick on Sunday, then we brought him to the hospital on Tuesday evening.”
Costa’s family also lives far from the hospital. When it became evident he was only getting worse, his parents summoned a bicycle ambulance to take him to the hospital, a two-hour journey on bumpy dirt roads.
“When we came to the hospital, the nurse checked on Costa and then started to give him some treatment. And we are still sitting here, waiting to see what is going to happen to him,” says Costa’s mother, Joanita. “Yes, I am afraid.”
Donquene compassionate but seems calm. He sees cases of severe malaria frequently, and has hope Costa will recover—but the damage from malaria has been severe and may be long-lasting.
“There is a great possibility that Costa is going to survive from that malaria, but the only thing is even if he recovers, he’s going to have some [long-lasting] effects,” Donquene says. “Probably what is going to happen is that his legs and arms will be paralyzed, and even the brain will not be just the way it should be. In that particular case, he will need to be rehabilitated. If the legs and the arms get paralyzed, he will have to go always to the hospital for rehabilitation of the legs and the arms. Now in the case of the brain, if it’s affected his brain, then he will have always to go to the hospital to see the doctor.”
Brain damage from malaria means children do not function as well intellectually or socially compared to healthy children.
“When the malaria is very severe it affects the child, even the way he or she is going to behave after he recovers from the disease. The child can be deformed somewhat,” Donquene says. “The child will be affected intellectually when the malaria is very severe. He will not be 100 percent normal.”
Both Justina and Costa are fortunate that they arrived when they did. The hospital has now run out of the medicine used to treat severe malaria, quinine in injection form, leaving only the tablet form of quinine. Donquene is able to dissolve the pills in liquid and give it orally, but at first both Justina and Costa couldn’t move their necks so they would have struggled to take their medicine this way.
“If a child comes today or tomorrow and we don’t have medicine, we will get an ambulance and take them to the district hospital,” Donquene says resignedly.
But some days they can’t get an ambulance fast enough to take the patients the two-hour drive to the district hospital.
“This year we had two cases where children died because they didn’t have treatment,” Donquene says. “There are times when people come who are already unconscious. They need quinine, but we didn’t have any so the children died.”
Malaria is rampant in this region. “During the rainy season, especially from January, February and March, we have got a lot of malaria cases that are reported to the hospital. About 50 percent of the people who come to the hospital are people who suffer from malaria,” Donquene says.
Justina comes from a family with eight children. “They always suffer from malaria but not this much,” says her father, Sona.
Without bed nets to protect them from mosquitoes, each year Justina’s family has to just wait for malaria to come, especially during rainy season. “We become worried when it’s rainy season, because we know that malaria is around the corner,” Sona says. “What we have to do is at least to clean the environment within the house and then we just wait to see what is going to happen during that time.”
What happens in this waiting game is that they get bit and they get sick.
It is not rainy season at this time of year, yet there are still mosquitoes and still a chance of contracting the parasite. For Justina’s family, this is the worst they have ever seen malaria.
Five days after this interview with Costa and Justina’s families, tragically Justina passed away.
“When we have a patient and that patient dies, I feel like I have lost a war,” Donquene says.
For Justina and Costa, the battle is lost. But for many other children, the battle and the waiting game continues.