"When I became a born again Christian, I started going by 'Favour' instead of my given name, Ephridah, because God has shown me favor in my life."
Favour is a Care Worker for the CURE Hydrocephalus and Spina Bifida program. The CURE Hydrocephalus and Spina Bifida program provides training for doctors on surgical intervention for children who have either hydrocephalus, spina bifida, or both. The program also provides supplies and a counselor for their hospital of origin. Favour has been working in a public hospital affiliated with this CURE program for over 17 years. She provides counseling and support for children with hydrocephalus and spina bifida and for their parents as well.
"When I just finished my schooling, I got a job with the International Federation for Spina Bifidia and Hydrocephalus (IFSBH) in 2000. After further training in Kenya, I was the first neuro-nurse in Malawi, and I formed support groups and did clinics for hydrocephalus, as well as follow-up visits. God opened a new door for me in 2012 when I got this new job working with CURE Hydrocephalus [at the same hospital].”
Favour goes to the ICU and she happens upon Pilirani who is delighted to see her. He cleverly says, "My mom is taking a bath," when we ask where she is, making Favour and the nurses laugh at his phrasing in Chichewa. "He’s so clever!"
Hydrocephalus is a condition where there is excess fluid on the brain, and it can make a person's head grow very big. Hydrocephalus can be congenital, but it can also be acquired if a person suffers from a disease like meningitis, cerebral malaria, or from brain tumors. Spina bifida is a defect on the spinal cord.
Favour spends the majority of her time in this ward with all the neurosurgery pediatric cases. Almost all of these children have either hydrocephalus, spina bifida, a brain tumor, or some combination thereof.
On her morning rounds, which are spread across four or five different wards on the public hospital’s massive campus, Favour has a brief chat with almost all of the parents of her patients to see how they are doing. In the afternoon, she does more in-depth one-on-one counseling with parents.
"For CURE, I deal with counseling the patients, following up with them, and making sure the surgeries are done. I have several wards to go around because the children are scattered all over at the public hospital where I work. I meet with new mothers, talk to them, take their data, where they're coming from, and I counsel them about CIC [Clean Intermittent Catheterization] if their baby has spina bifida because they have incontinence of stool and urine. So, we try to counsel them on all of this. I also counsel the mothers for their spiritual lives and tell them about Christ, because we are a Christian organization. We believe that the medical doctors can treat the condition, but Jesus heals. So we counsel the mothers, and we pray with them and encourage them to connect to churches."
Prince, whose skull was fractured at birth, had a major surgery two days ago. He is moved from ICU to the ward. The tape on the back of his skull says, "no bone." Favour translates it to the other mothers in the ward telling them, “handle with care” in a way that makes them laugh, but alerts them to be cautious when holding him. On this day, the ward is packed and Prince will need to share a bed with another patient.
“The challenges that these patients face is that most of them come from far and they are poor. So when we have helped them here, maybe they don’t have a phone number. So we can get them to have surgery, but when they leave the hospital, they never come back. Another challenge is that in our culture most people are not aware that hydrocephalus is a treatable disease. Most of them believe that it’s witchcraft, so they stay home for a long time without coming to the hospital. When they finally come, the head has grown very big, which is very difficult for us to manage. We wish that these children would come to the hospital as soon as possible for treatment because the earlier the better; if they come late, the prognosis is very poor."
Favour speaks to Enoch and his mother. He was a bit distracted by the camera!
Favour checks on the babies in the neonatal ward.
"Sometimes if the father finds out the child has hydrocephalus, he will run away and remarry and leave the mother alone, and the mother will be alone and struggling with this child with a disability. This is very common here and it is a very big challenge. There’s the belief that the mother has made this child to be disabled, and it’s not true. We need to sensitize our nation that the fathers should take part in caring for these children."
Favour notices that Memory has a fever and asks a nurse to check up on him.
Recently, Favour counseled a mom whose baby just had surgery. Afterwards, she told the mother’s story.
“It’s very sad. This young mother is here all by herself. Her mother is in Mozambique and she’s had a lot of challenges at home. Her grandmother, who she’s living with, told her, ‘The baby is going to die anyways. Don’t bother taking him to the hospital. They don’t survive past the age of five.’ So she doesn’t have any support from her family and she brought the baby alone. I showed her pictures of Dephine, another patient with the same condition, who’s fifteen, and told her the baby can live.”
“The challenges the children face is mostly when they go to school. Most of our schools are not disability friendly, so it’s difficult for them. When we tell them to do CIC [Clean Intermittent Catheterization], the toilets are not nice, so they cannot go to the toilets every four hours to stay clean. Those with hydrocephalus, some of them face learning difficulties and need special teachers to teach them, but if they are just put in the normal schools, they will not do well. But some are very bright, if they were treated young enough, they can do better in normal schools.”
Favour visits one of the children who is a crossover patient between the public hospital and the CURE hospital.
Favour says, "Dephine was born with hydrocephalus and spina bifida. She is an orphan and she came very late for surgery. But since her surgery, we have done so many things. We have helped her back. We have managed her legs, and now she is on her feet walking! She started walking and started going to school at the age of 11 and now she’s in Standard 7, so that’s a great achievement because of our effort following her up, encouraging her, training her. Now, she's an independent girl."
“I do home visits about once a week to follow up with how the patients are doing. Most of these patients I visit are not coming to clinics, so I go and find out why they are not coming and how the child is doing and also to see the environment where the child is being kept. One time I went to someone’s home and I found the child lying outside the home. The mother was away and had locked the door leaving the child alone outside the house. The mother didn’t even care for her child because to her she was a burden. She didn’t want to carry the child on her back, and so to her the best thing was just to leave the child outside the house. This child was a girl, so you can imagine... We need to make sure that the community is aware that these children should be kept safe because these are the same children that when managed well can do well in life.”
During a home visit, Faith holds one of her twin children, Melvin, while Favour checks the baby’s head to see if it has grown. Her daughter, Melvis, is healthy, but Melvin was born with hydrocephalus and has had four operations.
Faith says, “I would like to thank the neurosurgery team. Thank you! You have been running up and down, up and down, for several operations, but this one has finally worked. So God bless you and Dr. Kamalo. I don’t have any words, but I want to thank you and may the Lord bless you. I know there’s a lot of children born with this hydrocephalus, but us mothers have to stand strong and trust that with God all things are possible because doctors can do this work, but God is the one who heals.”
Favour continues:
“I've been working with hydrocephalus and spina bifida since November of 2000, and it has been very good because I have seen children since they were very small, and now they are teenagers. So it makes my heart very happy to see them. I have seen them growing and they are now doing well. Previously, people were telling me that these children, they don’t grow, they die, and this is a belief that is killing so many patients here. Most people don’t know that these children can have surgeries and can get better. They can even go to school. So if awareness can be spread enough to show people that these children can grow—if they receive treatment early—it will be good for our country."
Memory, a 20-year-old patient with hydrocephalus, walks into Favour’s office to ask for assistance in getting a doctor to check out her shunt, which is causing her pain. "A doctor prescribed me acetaminophen," she explains, "but I’d like to see a neurosurgeon." Favour says she’ll help her track down a doctor. Favour has known Memory since she was a toddler.
"I’ve been like a pillar. During the night, a patient will call me if they have a problem. They know that there is somebody who can answer them. My phone is 24 hours. They will call me if there is something happening, even when I’m at home, even at night, they will call me. They will know there is somebody who can direct them because the nurses they will change. Today, there will be new nurse. Tomorrow, there will be new nurse, but as for me, I’ve been there for a long time and people know that there is somebody who has seen us for all these years. So they have built a trust in me because I’ve been there in their lives."
"I’m very grateful to God that He gave me this job and that I’m connected to CURE, where my faith has even grown more and I can serve God and I can serve people at the same time. I can see that many children have benefited from all my experience, so I’m grateful to God for that."
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