Madam Mary (second second from left) with her son at launch of cleft awareness month

 The maternity ward at Ada East District Government Hospital is filled with the cries of new babies as Mary Tettegah lies on her hospital bed, feeling a mix of emotions after childbirth.

She gazes at her baby boy, her heart is heavy as she notices the opening on the upper lip of her new born baby boy. The sight makes her anxious, and she watches as he struggles to breathe, his tiny chest rising and dropping.

Babies can be born with a cleft lip, a cleft palate, or both. A cleft may just affect one side of the lip or there may be the two clefts.

It can range from a small notch to wide gap that reaches the nose and sometimes it can be hidden by the lining of the roof of the mouth.

Babies born with cleft lip or palate often struggle with eating, breathing and speech development.

Statistics

Globally, every three minutes a child is born with a cleft condition – about one in every 500 to 750 births. Africa has the lowest incidence, at approximately one in 1,200 births and in Ghana a case of cleft lip or palate is recorded in every 1,000 babies born.

A cleft condition is not a major cause of mortality in developed countries; however, it does cause considerable mor­bidity among children who are affected and their families.

The severity of the cleft and its imme­diate impact followed by the long-range effects may influence the parent’s percep­tions, reactions, and need.

Misconceptions

In spite of the large number of children who are diagnosed and cured of cleft lip or palate globally, there are unfortunately still many misconceptions surrounding the condition.

Many people in the developing coun­tries like Ghana still describe children born with clefts as ‘cursed babies’, or ‘babies from gods.’

Also, it is believed that such children are cursed, possessed, struck by an evil spirit, or were children born out of adul­tery or facing punishment from God.

In some African societies, such chil­dren are cruelly killed, starved to death, bundled in sacks and thrown into rivers. These beliefs had cost the lives of many innocent children.

Typically, in developed countries, a child’s cleft will be repaired soon after birth, but in the developing world, many children with clefts are not as fortunate as families often do not have access to quality healthcare services or the resourc­es to pay for proper cleft treatment.

Causes

In most cases, there is no known cause of cleft lip or cleft palate, and parents cannot prevent it. Also, most scientists believe it is a combination of genetic (inherited) and environmental (related to the natural world) factors cause clefts. Some environmental causes of cleft are smoking or drinking alcohol, obesity during pregnancy, and a lack of folic acid during pregnancy.

Stigmatisation

People who have cleft lips or palates often struggle to feel accepted in society, because society associates physical beauty with acceptance, even in the absence of any unfavourable reactions from others.

Due to this, most parents hide their children with cleft conditions from families, friends and the society, thereby denying them opportunity to receive treatment which later affect them in life while others leave such children to die without feeding them.

Way forward

During the launch of the cleft aware­ness week in Accra last month, a father with a cleft child said he had to move from where he used to live to another place because, both he, the mother and child were being teased and mocked.

At that same event, the Chief Exec­utive Officer (CEO) of the Korle-Bu Teaching Hospital (KBTH), Dr Opoku Ware Ampomah, demystified the notion that cleft is not a curse but a medical condition.

According to him cleft was a medical condition that can be corrected in a 45 minutes surgery.

He cautioned women who are in their fertile age not to take ‘any medication anyhow’ when they miss their period but rather check whether they are pregnant. He urged women to visit the hospital when they have challenges to avoid hav­ing such conditions.

Recommendations

The World Health Organisation (WHO) recognises that children living with an untreated birth defect such as cleft puts them at risk for malnutrition, poor health, and poverty.

The challenges of cleft lip and palate begin at birth and can be life-long, making it difficult for infants to properly feed, putting them at a higher risk of malnutrition.

In an attempt to fight the increasing rate of cleft among children in Ghana, it is important for stakeholders to in­crease access to health care, thus expand­ing healthcare infrastructure especially in the rural areas, train health care profes­sionals in cleft care and surgery while providing financial support for cleft treatment and rehabilitation.

Also, it was important to create public awareness campaigns in schools and communities to demystify the negative perception of cleft, reduce stigmatisation and give parents and children with the condition a sense of belonging.

 By Jemima Esinam Kuatsinu