How mothers in Migori are battling sickle cell stigma

When Rose Achieng’ (not her real name) took her eight-month-old baby to a hospital, she was worried that the results would be similar to those of her other three children.

Her fears were confirmed when doctors told her that her baby tested positive for sickle cell. This came after spending one week at the hospital.

Achieng’ says she rushed her baby to hospital when he experienced breathing problems.

“The doctors said the baby’s chest was bad, with an X-ray result showing that one side was collapsing. I then told the doctors that my baby had signs of sickle cell and that I had previously given birth to children with the disease,” she narrates. Achieng’ was advised to put him on medication.

She gave birth to her first child with her husband in 2017, but the baby died when he was two and a half years old, while the second child lived for only a week. The third child is now two years 11 months and he is also a sickler.

While at the hospital, Achieng’ received a call that the two-year-old had diarrhea and yellow urine. This meant that she would make another trip to the hospital to get treatment for her children. She often wondered why her first two children,whom she had before meeting her husband, were all healthy, while the others were sickly.

During one of her visits to the hospital, Achieng’ became curious and wanted to know why her children kept falling ill, unlike others.

She asked a doctor what could be causing the disease, and he told her that it ran in the family.

Achieng’ questioned whether her husband had the same problem and was informed that he also had similar traits, as the two children she had before getting married to him had no sickle cell,  while the ones she sired with him were all sicklers. Achieng’ says the results the same no matter how many times she tries to give birth.

Dr Paul Olik, the coordinator for non-communicable diseases, explains that sickle cell, which affects the red blood cells, is prevalent in Malaria endemic areas.

“People with sickle cell have their red blood cells change in shape to resemble the sickle. It takes the shape to help circumnavigate the malaria severity,” Dr. Olik says.

He explains that when the red blood cells acquire the sickle shape, they cannot live as long as normal red blood cells.

Their life span ranges between 20 to 30 days instead of 120 days, leading to massive destruction of red blood cells and resulting to anaemia.

Due to their shape, the red blood cells cannot carry enough oxygen to body organs, leading to a level of anoxia to tissues and there is also a high manufacturing of red blood cells in the bones.

“That is why you see bones that manufacture blood start having some kind of ‘ghosting skull’, the head become bigger and the liver and spleen enlarges and they appear with also extended abdomen,” Dr Olik says.

Notably, jaundice, or yellowing of eyes and mucous membranes, caused by over-destruction of the red blood cells, are witnessed.

Achieng’ explains that many people have advised her to have extramarital affairs that would enable her to give birth to normal children, but she has always brushed off their advice. The mother of four has always wanted to remain faithful to her husband.

“At some point, my husband started getting tired and asked me why the children he has with me are sickly. He suspected that I had some problem,” she says. Achieng’ explained to him what the doctor had previously told her, and he failed to understand, thinking that she was the one who brought the problem into their family.

“I have no peace because anytime he sees these children, like now that I went to the hospital with this baby with symptoms of chest congestion, he just knew it was the same problem that was going to be found,” she explains. She adds, “He just knows that I am the cause of the problem that is making our children sick”. Achieng’ says it has reached a point where people at home don’t believe her when she says she is taking her children to hospital.

“When you say that your child is sick, they don’t understand and think that you are lying. When you rush the baby to the hospital, they say that you know what you are looking for in the hospital and that your baby is just fine. They think that I am pretending,” she narrates.

Friends have since abandoned her and refuse to help her when she approaches them. Achieng’, who does menial jobs, says the people she considered friends now speak ill of her. She has only been left with her two sisters, who visit her in hospital and encourage her not to lose hope.

For Mary Bhoke (not her real name), her 11-year-old son was diagnosed with sickle cell when he was a year old.

She had made numerous visits to the hospital without knowing what was ailing her son. It was not until a doctor suggested that the baby be tested for sickle cell that it was discovered he was a sickler. Bhoke says her journey has been tough, as she has also been accused of bringing a ‘strange disease’ to the home into her marital home.

“At times I am told by my in-laws that I have brought a strange disease and that all the children at the home are healthy except mine,” she narrates. Despite the mockery, Bhoke says her husband has always supported her when their son falls ill and needs hospital admission.

According to data from Migori County Department of Health collected between January 2022 and May 2024, the county has a total of 1, 908 patients living with sickle cell.

“Gathering data on sickle cell has become problematic because there is no standard tool for collecting this data and people are not coming forward to share their information,” Olik says.

Dr Olik points out that sickle cell is inherited especially when people with traits marry and have children. He explains that sickle cell is often linked to myths and misconceptions such as the belief that a family has been bewitched because they give birth to children whose blood just keeps disappearing, which is not true.

He notes they have been doing sensitization within community units, spreading the word about the screening, which is done through the sickle scan.

Olik asserts that prevention involves people know their sickle cell status, the same way they get to know their HIV status. “This enables them to enter marriage with informed choices. With that knowledge, people will choose wisely,” he says.

Migori county is working towards establishing point-of-care screening so that  all newborn babies in Migori can be  screened for sickle cell.