Edgar Ogutu is a radio presenter at Ghetto Radio, where he has worked for 10 years, and the parent of Kunta Kinte, a 13 years old child diagnosed with sickle cell anaemia at the age of two years.
"I discovered he had sickle cell while he was two years old, the same day his mother was diagnosed with leukemia," he says, adding that they later lost the mum.
It was just a usual routine medical check-up at Aga Khan Hospital for the child.
"We noticed the child was having pain in his legs but we just thought it was normal for the child because he was still very young," Ogutu says.
"But when he was diagnosed with sickle cell, it was a shock to me because I was told it is genetic.
"But from my side, we do not have any traits of sickle cell, while from the mother’s side, there are no traits although she died due to leukemia."
He was coming from his job one evening when he got the news.
"I was coming from deejaying. As I enter the house, I find two medical results slips on the table," Ogutu recounts.
"At least with leukemia, I know it was something to do with blood cancer. But now I see sickle cell anaemia, the first time I heard of that name, in 2012."
TRAUMATIC JOURNEY
In Kenya, it is estimated that 4,000 children are born with SCD annually. A total of 21 out of 100 children in Kisumu are born with sickle cell trait as per the National Institute of Health.
For Ogutu, the journey of parenthood through the treatment of his son has been full of trauma.
"It even lead me to mental health problems for so long," he said.
"I just recovered two years ago. Because most of the time, we have lived in Kenyatta Ward 3D, which is a pen tractive cancer ward. Seeing those other children going through it has been full of trauma as a parent."
The cost of treatment has been draining mentally but also financially.
"It has been very expensive in terms of drugs and even the blood transfusion. Sometimes the drugs given do not even help the pain that doctors describe to be 300 times that of labour pain,," Ogutu says.
He sometimes feels helpless when he watches his son in excruciating pain.
"One time, I took my son to the hospital and he was in pain, but we were sent back home because I didn't have money for his treatment," he said.
"It was painful watching him in such pain, and there was nothing I could do except take him back home."
People do not want a conversation about sickle cell with caregivers as there is still stigma around how people see the disease. Some think it is contagious.
"We need to treat sickle cell as a global pandemic and demand the provision of free drugs," Ogutu said.
"Most of the time, we caregivers go to our houses and cry alone there because the discrimination we face is another challenge. Even our own families, relatives and friends discriminate against us."
Being told it has no treatment is tough to take, he said, because you have to look at your child with a lot of desperation and even nearly lose hope at times.
He said it has been hard to balance between his job and being a caregiver and a single father.
"Very few people understand and support the single father. We receive very little to no support at all, unlike single mothers' support from the government and even NGOs," Ogutu said.
"Who is looking after us? We also need to be taken into consideration and initiatives to help single fathers put in place also."
When he is at work, he is always prepared to be called to take his son to the hospital. He cannot be away from him for more than one hour.
Being a media personality has not helped. He says one needs to maintain a certain level of imagination as they struggle with mental health.
Besides making drugs free and investing in treatment, he urges the government to “come up with community health workers for sickle cell patients to help the caregivers when they need to go to work".
"Also we need to look at the mental health of the caregivers, which is also very important."
MYSTERIOUS DIAGNOSIS
Imagine living in a foreign country without relatives and family? That's the situation of Joan Lutifa, a 40-year-old mother of a sickle cell child from Uganda, who has made Kenya her home for years now.
"She was diagnosed with sickle cell at the age of one and a half years old, and it has been a journey of ups and downs as a parent," Lutifa, the mother of Elizabeth Blossoms, said.
"I was doing a bathtub, and when she tried to run to me, she fell on her hands. As I ran to her, I discovered her left leg and hand were paralysed," Lutifa said.
She took the child to the hospital and spent almost a week with her, which is when she learned that the child had sickle cell anaemia.
"I heard the doctor say she has a stroke," Lutifa said.
"I was released to go home three days later. While I was breastfeeding, she bit my nipple, and that’s when I realised another stroke had hit her, and that was the beginning of the journey."
Lutifa had never seen anyone with sickle cell in her family. It came as a shock, and to date, she has never understood how it came about.
The hospital has become a second home to her due to regular admissions.
"The journey of 10 years since 2012 has not been easy. Discrimination from family and friends, missing out on important functions, and not going to work; being a caregiver has been an uphill task," Lutifa said.
"For me, my family has not been supportive at all, making it a very lonely journey and also very costly in financial, emotional and mental terms."
The daughter has been admitted for eight months now, and it has been draining Lutifa financially.
"While also not having any person on my side, with the father leaving us after discovering the condition of the child,” she said.
"He left me the whole medical bills and also emotional stress to deal with."
She has suffered feelings of guilt and personal responsibility surrounding her child’s diagnosis of SCD.
“I am always really sad because I know that she’s going to have to deal with it for the rest of her life, and there’s nothing that I can do," Lutifa said.
"Knowing that I was the one who brought her to this world, it hurts a lot sometimes."
There is very little knowledge and comfort associated with sickle cell care, from the doctors and other caregivers.
"We don't know more about SCD. Doctors tell us there is no treatment, only drugs to reduce the pain," she said.
"This sometimes makes me feel I am the cause of all my child is going through, thus it never makes me comfortable at all."
Dealing with her ill child during crises is emotionally upsetting.
“I cannot ever get used to my child experiencing pain. I feel helpless when I cannot stop the pain and watch her go through it,” she said.
"The fact that she cannot talk makes me feel even more helpless as sometimes when she is in pain, she only makes signs to know that she is in pain."
LIVING WITH STRESS
A study from the Library of Medicine reports that chronic stress is linked to changes in certain areas of the brain, such as the prefrontal cortex and limbic system.
This has the potential to cause cognitive, emotional and behavioural changes.
The stress caused by caregiving can cause psychological and emotional distress and sometimes it's chronic, which increases your risk for anxiety and depression, says Twalha Abdulkadir, a counsellor in Mombasa county.
"Experiencing a long-term stressful situation, like caregiving for your child without effective stress management efforts, can lead to one experiencing emotional overwhelming and burnout," Abdulkadir said.
Sometimes, the chronic stress can hurt your body and mind and create a multitude of unpleasant physical and psychological symptoms.
For example, it can cause tension, leading to muscle pain and headaches, and sometimes leading to memory issues.
Caregiver burnout is a physical, emotional and mental exhaustion state. It causes fatigue, anxiety and depression over time.
One experiences withdrawal from friends, family and other loved ones, the loss of interest in activities previously enjoyed, feeling hopeless and helpless with changes in appetite and weight.
Abdulkadir advises that practising meditation is one valuable strategy for coping with stress.
"Having mindfulness exercises will at one point help you relax and allow you to approach your negative thoughts and emotions from another vantage point," he says.
For instance, he says, you should remind yourself that you are experiencing a specific thought or feeling, but that does not necessarily represent your permanent reality.
Also visit the hospitals for psychological assistance, and have a supportive family to resolve the problem of mental health.
"We as the public should give caregivers a listening ear. They have a lot of issues they would love to remove from their chest that will affect them if left unsaid,” Abdulkadir said.