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Breaking the stigma of cleft lip, palate; the role of stakeholders

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

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.

Madam Mary Tettegah and her son displaying a picture

In that moment, Mary feels a shift in her hopes for her child. Confusion and sadness washed over her, leaving her feeling overwhelmed.

Just then, Mary’s mother enters, her expression after seeing her new grand­son next to her daughter reveals disap­pointment and concern.

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“What kind of child have you given birth to?” Her mother’s words cut through the air. Mary feels the weight of her mother’s disappointment and struggled to hold back the tears, unable to meet her gaze.

The silence that followed was heavy. Mary feels a deep ache, not just for her child but for the support she longs for. As her mother turns to leave, Mary is left alone, feeling the solitude of the hospital room around her.

Before leaving, Mary’s mother told her that no one in their family had ever given birth to a child like this, express­ing her belief that the baby was either cursed or somehow evil. Looking at the behaviour of her mother, she feared how they would be accepted at home.

The fear of being stigmatised by family, friends and members of her community overshadowed Mary and this epitomises similar stories and plight of families with cleft-diagnosed children.

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What is cleft?

Cleft lip (CL) occurs when the lip does not fuse together properly during foetal development. Cleft palate (CP) is a hole or opening in the roof of the mouth, when the roof of the mouth (which is made up of both the hard and soft palate) does not fuse together properly.

The gap is there because parts of the baby’s face did not join together proper­ly during development in the womb.

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.

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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.

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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

• A child with cleft palate
• A child with cleft palate

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.’

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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

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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.

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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.

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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.

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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

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The Prophet part 5

In the course of giving ‘directions,’ Osofo Antubam asked two wom­en to wait till he finished with those in the queue. He had quietly suggested that he needed to spend time with them in order to detect the exact source of their problems, and they had also indicated their willingness to spend more time with him. He had one main objective in mind.

Mary and Suzzie had proven to be hugely helpful to him, but they had failed to help in the one most important area – the bedroom. He didn’t want to make the mistake of spending another night alone, and he wanted an alternative arrangement, just in case the girls disappointed him again. His action proved to be very wise, a few min­utes later.

“Osofo, we have finished. The total figure today for the offering, tithes and consultations is GH¢5, 200. We want to add them to yes­terday’s money and pay it into the account, after you have taken what you need for your personal and church expenses.”

“I have already taken some mon­ey from the consultation fees, so please pay it all into the account. I will see you at the house, won’t I?’‘Osofo’, Suzzie replied, ‘I wish you could go with us to the bank. If you could introduce yourself briefly to the Manager, we would then pay the money into the bank and give the receipts to you.” “Don’t worry, ladies.

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Just go to the bank and see to on it, and call me. Let me know when you are coming to the house.” The ladies agreed and left. “Well then’, Suzzie said, ‘how much did we make today?” “Let me see” “Mary replied. “GH₵ 600.”

“Good. Now let’s pay his money into the account and go home. Did you see those ladies who stayed behind? I think the Osofo will be having them for desert after eating our food. “I saw it clearly. And did you notice that he wants us to call him when we are leaving for his house.”

“Mary, I told you that very soon the ladies will be fighting over him. He may keep us on for some time, but eventually he will sack us when he realises that we have no inten­tion of sleeping with him.

“Now,” Osofo Antubam addressed Maame Lydia, “what I want you to do is to go home and get a few things to spend the night at the mis­sion house. I will spend time to get to the bottom of this problem.

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I assure you that from tomorrow, you will see a complete change in your business, and you will also notice that you will look radiant, and everyone will notice you for the beautiful woman you are.”

“I thank you, Osofo. I believe you. I know you will help me.” “Take this for taxi in and out. Call me when you are leaving home, and I will give you the directions to the mission house.”

“Now, he said to Abena Grace, ‘let’s go to the mission house. Today, we will solve the problems permanently. From tomorrow, there will be a new Abena Grace, prosper­ous and beautiful.”

“Amen, Osofo, thank you so much,” Abena replied as they walked to the roadside to join the waiting taxi. “It’s almost seven,” Suzzie said to Mary. Let’s call him. Mary called, and Osofo Antubam answered. “Osofo, the account was opened this afternoon.

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We paid the money in. We have all the documents here. When shall we bring them?” “Er, Mary, why don’t you bring them early tomorrow morning? If you can’t get here by five in the morning, then let’s meet at the church.”

“Okay then, Osofo, I think we’ll meet you at church.” “I told you Mary,” Suzzy said. “He must be busy enjoying his desert. We will have another plan ready by tomorrow.” “How long are we going to be in this business, Suzie? When do we stop?” Don’t be silly, Mary.

Have you got enough money to set up your salon? As for me, I need money to pay the rent advance on a shop in a good location, some money to buy some stuff to stock the shop, and some cash to keep for personal expenses.

The rate at which we are going, we could be okay in about two weeks. A couple of rich men can come any time to consult him, and that could solve our problem quick­ly. Have patience, Mary. We’ll be okay very soon. And don’t worry about the wife or concubine busi­ness.

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I have already told you that I will never allow this fake pastor to even kiss any of us.” ‘Osofo,” Maame Lydia said as they waited for a taxi, “when do I see you again? I can come tomorrow if you want.”

“Let’s talk after the service tomorrow. I will try to find some time’. He hailed a taxi, paid the fare and ushered her in. Within a few minutes of entering his room, Abena Grace knocked, and Antubam ushered her in.

He poured a drink for the two of them. Make yourself comfortable, Lydia. We will have an enjoyable evening, and at the same time, you will see the end of your problems.

The whispers woke him up. It’s getting to time, they seemed to be saying. The radio people will come today. Get ready to go with them. You can start in Koforidua, then Kumasi, then Accra.

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You will soon be too busy for the daily services. Change from daily to Mondays, Wednesdays and Fridays. You will be in demand all over the nation. Very soon, others will be jealous of your success.

Antubam nodded in appreciation. It’s getting interesting, he told himself. Very interesting. “Osofo, did you hear some strange noises like voices?” Abena Grace asked. “Voices? Maybe you were dreaming, Abena.

Now, why don’t you get closer to me and forget about voices in your dreams?” She didn’t mention the subject again, but she was very certain that some strange voices were speaking in the room.

And she noticed that Osofo Antu­bam was listening intently and nod­ding. She needed solutions to her problems urgently, and her friend Yaa Takyiwaa had told her about this new pastor who was doing wonders, and urged her to seek his assistance.

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She agreed to go to his home be­cause she thought that would help her get the solutions quicker. But even though she had never encoun­tered them before, she had heard stories about dwarfs who provided all manner of spiritual solutions to people who helped them.

And she knew that in the long run, the results were disastrous. No, she decided. She will not have anything more to do with a pastor who employed dwarfs. “Osofo, I want to go home before my parents wake up.”

By Ekow de Heer

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 ‘Allahu As-Samad’ (Part 2)

 Excellence of Tawakkul (Complete reliance on Allah)

In an ahadith of the Prophet Muhammad. It is narrated by Umar ibn Al-Khattab (RA):

“If you were to rely upon Allah with reliance due to Him, He would provide for you as He provides for the birds. They go out in the morning hungry and return with their bellies full.”

(Tirmidhi, Hadith 2344; Ibn Majah, Hadith 4164)

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This hadith beautifully illus­trates the concept of tawakkul (reliance on Allah). It emphasis­es that true reliance on Allah, coupled with taking necessary actions (as the birds do by leaving their nests in search of food), and ensures that Allah will fulfill our needs.

Interdependence among Humans

Although Allah is As-Samad and entirely independent, He created human beings to rely on one another as part of His divine wisdom. This interdepen­dence fosters relationships and builds communities. Allah says:

“And We have created you in pairs.” (Qur’an 78:8).

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The Prophet likened the be­lievers to a single body, saying:

“The believers, in their mutual kindness, compassion, and sympathy, are just like one body. When one part of the body suffers, the whole body responds with sleeplessness and fever.” (Bukhari, Hadith 6011; Muslim, Hadith 2586).

Teaching the Concept of As-Samad to Our Children

To inculcate the concept of As-Samad in the lives of our children, we must start with education, role modeling, and active engagement:

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•Teach Through the Qur’an and Sunnah: Introduce Surah Al-Ikhlas to children early on, explaining the meanings of As-Samad. Share relevant sto­ries from the Qur’an and hadith that illustrate Allah’s indepen­dence and mercy.

•Encourage Dua and Reli­ance on Allah: Teach children to seek Allah’s help in all matters, big or small. Reinforce that Allah is the one who pro­vides, protects, and guides.

•Foster Gratitude and Tawakkul: Instill a sense of gratitude for Allah’s blessings and reliance on Him during challenges. Encourage children to say, “Hasbunallahu wa ni’mal wakeel” (Allah is sufficient for us, and He is the best disposer of affairs) (Qur’an 3:173).

•Model Interdependence: Demonstrate how reliance on Allah does not negate col­laboration with others. For example, encourage teamwork, sharing, and helping others while emphasizing that Allah is the ultimate provider.

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Leveraging Strengths to Build Society

Allah has created each indi­vidual with unique strengths and abilities. It is our respon­sibility to recognise these gifts and use them to benefit others. Allah commands:

“Help one another in acts of righteousness and piety, and do not help one another in sin and transgression.” (Qur’an 5:2).

The Prophet said:

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“The best of people are those who bring the most benefit to others.” (Tabarani, Hadith 8597).

Islam’s Call to Unity and Compassion

Islam is a religion that pro­motes unity, love, and compas­sion. Allah commands believers to maintain unity and avoid division:

“And hold firmly to the rope of Allah all together and do not become di­vided.” (Qur’an 3:103).

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The Prophet empha­sized the importance of caring for others:

“None of you truly believes until he loves for his brother what he loves for himself.” (Bukhari, Had­ith 13; Muslim, Hadith 45).

Conclusion

In conclusion, the concept of As-Samad teaches us to recog­nise Allah’s perfection, inde­pendence, and sufficiency. As believers, we must:

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• Acknowledge our dependence on Allah and place our absolute trust in Him.

• Teach and inculcate the concept of As-Samad into the lives of our children, fostering reliance on Allah and gratitude for His blessings.

• Recognise the interde­pendence among humans and actively support one another in righteousness.

• Promote unity, compas­sion, and generosity within our communities.

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Allah and His Angels send Salaat and Salaam upon His Nabiyi, Oh Ye who believe, send the blessing upon the Prophet Mohammed (s.a.w.).

May Allah guide us to em­body the meanings of As-Samad in our lives, strengthen our reliance on Him, and bless our families with faith and under­standing. Ameen.

References

1. Qur’an 112:1-4

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2. Qur’an 10:3

3. Qur’an 31:26

4. Qur’an 35:15. Qur’an 65:3. Qur’an 78:8. Qur’an 5:2. Qur’an 3:103

5. Tafsir Ibn Kathir, Surah Al-Ikhlas

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6. Muslim, Hadith 2577

7. Tirmidhi, Hadith 2516

8. Bukhari, Hadith 4684

9. Tabarani, Hadith 8597

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10. Bukhari, Hadith 6011

 By Imam Alhaji Saeed Abdulai, 1BN – Michel Camp

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