Margaret Toh (borrowed) was totally horrified when she saw her baby boy for the first time after delivery, making her sick instantly.
Her seventh baby had been born with cleft lip and palate after a protracted complication during childbirth.
A cleft is a gap or split in the upper lip or roof of the mouth (palate) present from birth which disfigures the face and/or causes speech defects.
“The nurses told me my baby had a fault, but I had not seen him yet. When they brought him and I saw his lips, I was extremely terrified because he looked scary,” she said.
The health staff allayed her fears, assuring her that it was a natural defect and could be corrected through surgery.
Madam Toh, unemployed mother of seven, was required to pay at least GHS 2,500 for the surgery and that was another nightmare because she did not have the wherewithal.
Marine spirit
Her fears were further heightened when she finally arrived home and neighbours told her the baby was not a human being but a marine spirit, recommending to her a spiritual place where she could get rid of him.
“In fact, the entire neighbourhood was convinced that he was from a water god and so, I could not sleep by him; I was extremely scared.
“I told my sister about it, and she nearly attacked them out of anger but for the intervention of her pastor husband,” she said.
As a cleft patient, Madam Toh’s baby could barely eat anything.
“I could not breastfeed him; I was extracting the breastmilk into a bowl to spoon-feed him, and I still did that even at age two,” she said.
Surgery support
Madam Toh eventually visited the Korle Bu Teaching Hospital (KBTH) where doctors told her about ‘Operation Smile Ghana,’ an NGO providing health care for cleft patients and helped her establish contact with them.
“His cleft lip has been closed by Operation Smile Ghana at Korle Bu and we are here now today for his cleft palate. I pray for God’s intervention for a successful surgery,” she told the Ghana News Agency during a free surgery session at the Cape Coast Teaching Hospital.
“They have been extremely helpful to me, and I thank God for them,” she added.
Cleft palate
Another mother, Riama Issah only realised her baby girl’s condition at the age of two.
“I could not breastfeed her from the beginning, but I did know what the problem was until she turned two.
“The food was coming through her nose anytime I fed her, and I did not know it could be a problem for her in future,” she said.
“I had seen the one on the lip but it was my first time seeing and hearing of cleft palate and so I got really scared,” she stated.
Madam Issah said when her girl turned three this year and started speaking, her speech was nasal.
“Her friends at school laugh at her when she speaks,” she lamented.
She sought help at the 37 Military Hospital and was referred to KBTH where she was also connected with Operation Smile Ghana.
“They have been very helpful to me because there was absolutely no way I was going to get the money for the surgery,” she said.
Cleft incidence
Different studies have revealed varied cleft prevalence in various parts of the world, with some studies suggesting that Africans have the lowest incidence with approximately one in every 1,200 births.
Mr Elikem Nyavor, Country Manager for Operation Smile Ghana, estimated that Ghana had a backlog of about 10,000 cleft cases which needed care.
In collaboration with notable hospitals across Ghana, he said they had provided free surgeries for more than 2,400 patients in the last decade.
Patient’s ordeal
He observed that many children born with cleft palate continued to die from malnourishment due to the lack of proper feeding.
Corroborating the account of Madam Issah, he said the food they ate usually came through their nose because most mothers lacked understanding on how to properly breastfeed such babies.
Those who survived cleft palate grew up speaking through the nose if the gap was not closed, he added.
“Mothers have had to lose their homes and fathers have denied their children because in their whole lineage, nobody has been born with that condition,” he indicated.
“Access to health care is even a challenge because many mothers would want to go to the health centres at a time nobody is around because they do not want to be seen with babies with such conditions,”
Superstition
Mr Nyavor indicated that many mothers, for fear of stigma fuelled by superstitious beliefs about cleft, usually kept their babies in-doors until the worst happened.
He insisted that cleft had nothing to do with evil spirits or witchcraft and urged every parent with a cleft child to seek urgent help.
Comprehensive care
He noted that the care for cleft patients was comprehensive and, therefore, went beyond surgical operations.
He explained that patients, depending on their conditions, might require a nutrition programme where they visit the nutritionist regularly for proper feeding methods, dental care, speech therapy, and in some cases, psychological support.
Given Ghana’s situation, Mr Nyavor said it was crucial to prioritise strengthening the health system through training to decentralise comprehensive care for cleft patients for easy access by the public.
“That is why we are working to ensure that going forward, cleft patients will be able to walk into CCTH to receive comprehensive care.
Dr Stephen Laryea, the Medical Director of CCTH, noted that cleft palate patients were susceptible to various recurrent respiratory infections.
Consequently, he has encouraged parents and guardians with cleft babies to immediately report to a health facility to seek help.
“It is congenital; it is due to failure of fusion of some parts of the body during the foetus formation process,” he explained.
He said most of the time, people did not know that there was help and so, they usually did not visit the hospital.
“Physical deformity gives them mental trauma, and some are thought to be coming from the gods.
“These children are unable to have self-esteem when they grow up and so, do not hide them in the room. Such a short surgery will change their lives eventually,” he advised.
Stressing the need to expand cleft surgery services across the country, he indicated that the hospital’s collaboration with Operation Smile Ghana over the years had been fruitful because people who were previously abandoned by families had been reintegrated into the society.
He added that the hospital was also getting more skilled staff to undertake the surgeries, hoping that they would soon start conducting such surgeries by themselves to serve the public.
Ashantibiz
