Puzzle in rise of birth defects in remote village

Eunice Boke resides in Mpirani, Kilifi County, a village tucked away from civilisation.

Four of her seven children were born with defects. Like many other mothers of children with disabilities in the village, Boke has yet to get any medical answers.

She says that, for all four pregnancies, she visited a health facility near her home for Antenatal Clinics (ANC) and was assured that the babies she was expecting were healthy.

She attests to having stuck to a normal diet that included cereals, traditional vegetables, and other foods that were rich in proteins and carbohydrates.

“I did not experience any problems and the nurse kept assuring me they were okay but I was surprised that, each time, my babies came out with birth defects,” says Boke.

She says the deformities have nothing to do with her family’s genetics.

“I am okay and our family does not have this problem. I don’t know, maybe it originates from my husband's side,” says Boke.

Sadia Mohamed's child was born blind and unable to sit or walk. Mohamed says all her ANC visits indicated a healthy pregnancy and, despite the ANC being far away, she attended all the clinical visits, ate all the required foods and received the polio and measles vaccine.

“Two months after my baby was born, I realised my baby could not see. Later, when he was unable to sit, he underwent an operation to rectify the condition. Although he can sit now, he cannot walk or speak,” says Sadia. 

Data from Kilifi County's Department of Health Services indicates that as of April 11, 2022, 100 children were registered with disabilities with the majority being female.

The data that was collected at Jabali Early Child Development (ECD) centre in Mpirani village captured 30 males and 70 females born and living with various forms of disabilities.

However, there is no imperative scientific research that has been conducted to show why so many women in the village give birth to babies with deformities.

According to Esther Njeri, the secretary of Jipe Moyo Walemavu, a support group for people with disabilities, a lot of women in Mpirani do not take their children to clinics or hospitals after birth.

She also claims that many pregnant women are subjected to heavy manual labour like carrying water for long distances or potentially harmful activities like burning charcoal which exposes them to smoke.

“Let us tell the truth. Attending the ANC is an issue here. You find a person stays in Kambicha but lacks the money to bring the baby to Marereni Clinic so they end up not taking their newborn babies to the hospital and leave them without therapy or vaccinations,” says Njeri.

“The issue of deformities in Mpirani is because most of our people including pregnant women have to be pushed to get a checkup. They don't know the importance of going to the hospital early to detect the deformities,” says Ganze Sub County administrator Boniface Nganga.

He says the county government has deployed Community Health Providers (CHP) to sensitise pregnant women on the importance of attending prenatal clinics because most of them rely on unskilled midwives (wakunga).

Tudor Healthcare Director Dr Tobias Koi says that anything that affects the proper formation of a baby in the womb has everything to do with the mother’s blood.

“The possible cause for these deformities can be from the environment, water and air,” says Koi.

According to Kilifi County's 2024/2025 annual development plan on preventive and promotive health services, 4,159 children are born with low birth weight because of low coverage of ANC.

The report indicates late presentation to ANC by pregnant women with only 55 per cent out of the targeted 80 per cent of pregnant women attending four ANC visits.

Further, only 61.6 percent of children are fully immunised out of the 90 per cent target due to stock out of rotavirus antigen.

The report calls for advocacy to scale up skilled deliveries with 79.7 per cent out of 100 per cent deliveries being conducted by skilled attendants.

Further, 32,088 children less than five years are stunted with more children identified through survey.

Similarly, 46,462 children under five were found to be underweight with the survey recommending improvement.

The report called for the need to expand services from facilities offering Basic Emergency Obstetric Care BEOC as currently there exist 145 facilities out of the intended 150.

According to Dr Kenneth Miriti, Kilifi County's Head of Reproductive Health, most women in far-flung areas do not take the folic acid supplements that are freely available in health facilities

Getting enough folic acid and other micronutrients such as zinc and Vitamin D before and during pregnancy can prevent major birth defects in the baby's brain or spine.

“A lot of women do not take the folic acid tablets yet it is crucial in the formation of the baby in the very first days of pregnancy. If you plan to get pregnant, it is advisable to swallow the folic acid for at least six months before getting pregnant to avoid getting a child with congenital abnormalities,” says Dr Miriti.

Ms Kadzo Kazungu, a certified midwife in Mpirani says the major problem is that the ANC clinics are far from the villages and the women have to travel long distances for services.

One has to part with Sh400 to and from the clinics which is a tall order because of the high levels of poverty.

Kazungu says they welcome the construction of clinics in the village to enable the women to make frequent visits for ANC checkups.

Mpirani CHP Cosmaya Mapenzi says many of the women prefer to consult unskilled birth attendants (wakunga) because of the costs associated with seeking medical attention.

She says the midwives are not able to help when there is a complication because most are not trained and lack the skills to deal with prolonged labour.

She adds that the women may also not get access to proper nutrition.

Simaken Charo, the chair of the Magarini Disability Development project says a lot of the children with disabilities are hidden by their families so they do not get access to both medical and social help.

Charo has 250 registered persons with disabilities from the villages of Mpirani, Garashi, Marafa and Pumwani. She also runs Early Childhood Development (ECD) classes for disabled children who stay at home.

“The women attend clinics so we don’t know what the problem is. Maybe it has to do with the mothers’ system because they usually attend the clinics until birth," she says. 

She says health experts should take test samples for water and soil to understand what causes the deformities.

Head of Health Magarini Sub County Walter Kagohu says there are no clear records on the number and types of disabilities in Mpirani.

He says the county records over 70 per cent for first antenatal visits. However, numbers in subsequent visits keep reducing. 

“I have observed that among the challenges is that the clinics in Magarini and Mpirani are far and the women start attending the clinics late and usually don’t finish the visits. The recommended number of visits is eight but if they can do four, it is helpful,” says Kagohu.

He says in Mpirani there are only two clinics at Marafikizeni and Marekebuni. The village has three community health promoters (CHP) one government Community Health Extension worker (CHEW) and a Community Health Provider (CHP), all trained in the basics of educating women on matters of pregnancy.

Kagohu says that even though all pregnant women get dietary supplements during the ANCs, some don’t take them.

“We give the supplements to the women who visit clinics but we cannot monitor them at home. We are informed that some of them so there is the risk that their babies will be born with deformities,” says Kagohu.

He adds that during the visits, pregnant women also get crucial vaccines to prevent diseases such as tetanus and malaria. 

In addition, a child born in a hospital would get polio and BCG vaccines. 

“They get Bacille Calmette-Guérin (BCG) to prevent TB and pentavalent vaccine in three doses to prevent diphtheria, cough, tetanus and Haemophilus influenza and pneumonia. After nine and 18 months they are supposed to get the measles vaccine,” says Kagohu.

He says they are yet to get feedback from Basic Needs Basic Rights Kenya to help research the issues of disabilities in Mpirani.

Kagohu recommends that Kemri visits mothers who have several children with disabilities to find the root causes.

According to the County Health Director Hassan Leli, they are working to install ultrasound facilities in antenatal clinics in the villages.

“We are collaborating with other organisations to get point-of-care ultrasound that can be done in small clinics. All the women can undergo ultrasound for free to be able to see if there are any deformities during pregnancy,” he says.

He says it is important to ensure that the women come to the clinics immediately after they get pregnant and complete all the visits to help detect and prevent any birth defects.

“We have had challenges where the first visit happens when they are about to give birth. The numbers are slowly decreasing but we want the women to come to the clinics even when they are giving birth,” says Leli.

Mpirani village elder Nelson Dzuya, says the area has no history of mining industries and it was a forested area before most of them settled in the village.

He says the village relies on farming of green gram, vegetables and poultry as a means of livelihood. However, Dzuya says the cases have continued to increase because there is no intervention by the government.

He says that the village has only eight midwives who are well-trained to handle pregnant women.

Dzuya says the county government has not been active in addressing the problem nor has the national government even though blood samples were taken from some of the mothers.

This story was made possible with the support of the UZIMA-DS project, funded by the National Institutes of Health (NIH).