Mothers Hide Cleft-Affected Infants in Polythene to Avoid Stigma: A Crisis and a Cure in Ghana

In a heartbreaking testament to societal prejudice, some mothers in Ghana are resorting to wrapping their infants born with cleft lip and palate in polythene bags when traveling to seek medical care. This extreme measure, aimed at concealing the child’s condition from public view, highlights the profound and damaging stigma surrounding craniofacial differences. This practice, reported by officials at the National Cleft Centre in Kumasi, underscores a critical intersection of public health, social justice, and the urgent need for comprehensive cleft care integration into national health systems.

Introduction: The Hidden Reality of Cleft Stigma

The journey for a child born with a cleft lip and/or palate is often medically complex. However, in many communities, the social and psychological challenges can be equally daunting. The shocking revelation that mothers use polythene bags to hide their children on the way to the hospital is not merely a anecdote; it is a stark indicator of deep-seated discrimination. This article explores the medical facts of cleft conditions, the roots and consequences of the associated stigma in Ghana, the life-changing work of the National Cleft Centre and its partners, and the critical policy shifts needed to ensure no child is left behind due to a treatable condition.

Key Points at a Glance

• The Practice: Some mothers conceal cleft-affected infants in polythene bags during hospital visits to avoid public scrutiny and stigma.
• The Prevalence: In Ghana, approximately 1 in every 770 children is born with a cleft lip and/or palate.

The Impact: Untreated clefts lead to difficulties with feeding, breathing, speech, and result in severe social isolation, bullying, and reduced opportunities.

• The Solution: The National Cleft Centre in Kumasi, supported by Smile Train, provides free, quality surgical care and has performed over 3,000 surgeries in Ghana since 2003.
• The Goal: Health officials are advocating for the full integration of sustainable cleft care into Ghana’s National Health Insurance Scheme (NHIS) and Universal Health Coverage (UHC) frameworks.

Understanding Cleft Lip and Palate: A Medical Overview

What is a Cleft Lip and Palate?

A cleft lip and/or palate is a congenital condition that occurs very early in fetal development, typically between the 4th and 9th week of pregnancy. It results from the failure of the facial structures (the lip and/or the roof of the mouth, or palate) to fuse properly. A child may have a cleft lip only, a cleft palate only, or both. This is not a disease but a physical variation in structure.

Causes and Risk Factors

The exact cause of most clefts is unknown and is considered multifactorial, meaning it arises from a combination of genetic predisposition and environmental influences. Identified risk factors can include:

• Maternal nutrition deficiencies, particularly folate (Vitamin B9).
• Maternal smoking and alcohol consumption during pregnancy.
• Certain medications taken during pregnancy (e.g., some anti-epileptic drugs).
• Maternal diabetes or obesity.
• Family history of clefts.

It is crucial to understand that clefts are not caused by parental actions, curses, or supernatural forces—a harmful myth that fuels stigma.

Immediate and Long-Term Challenges Without Treatment

For a newborn, a cleft palate makes feeding extremely difficult as the infant cannot create proper suction. This can lead to malnutrition, failure to thrive, and recurrent ear infections. As the child grows, untreated clefts cause:

• Speech Impairment: Air escapes into the nasal cavity, making speech unintelligible (hypernasal).
• Hearing Loss: Eustachian tube dysfunction leads to chronic fluid build-up and conductive hearing loss.
• Dental and Orthodontic Issues: Missing, malformed, or extra teeth are common.
• Psychosocial Trauma: The visible difference often leads to bullying, social rejection, and low self-esteem, severely impacting education and future employment.

A single, timely surgical repair can restore feeding, speech, and appearance, transforming a child’s life trajectory.

Background: The Stigma in Context

The act of hiding a child in a bag is an act of desperation born from a culture of shame. In many Ghanaian and broader African societies, physical differences are often misinterpreted through a lens of superstition or seen as a source of family shame. Mothers, in particular, may face direct or indirect blame for “producing” a child with a cleft. This social ostracization isolates families and delays their pursuit of help, as they fear the judgment of their community at the hospital, in the market, and even within their own extended families.

Professor Solomon Obiri-Yeboah, Head of the National Cleft Centre, poignantly described the scene: mothers arriving with their babies hidden in polythene, where passersby might assume they are carrying ordinary goods. This concealment is a direct response to the anticipated stigma. The stigma, therefore, becomes a barrier to care itself, creating a vicious cycle where the condition remains untreated, and the social marginalization worsens.

Analysis: The National Response and Its Gaps

The National Cleft Centre: A Beacon of Hope

Located in Kumasi, the National Cleft Centre is the first facility of its kind in West Africa dedicated solely to comprehensive cleft care. It stands as a model of what is possible. Built and supported by Smile Train, the world’s largest cleft-focused NGO, the centre provides not just free primary surgeries, but a full spectrum of care including pre-operative assessments, nutrition support for underweight babies, speech therapy, orthodontics, and psychosocial counseling. This holistic approach is essential for true rehabilitation.

Smile Train’s model is based on partnership and sustainability. Instead of building parallel systems, it empowers local doctors and hospitals through training and funding, creating a lasting local capacity. As noted by Smile Train’s President and CEO, Susannah Schaeffer, the economic impact is also significant; over $67 million in economic benefit has been generated in Ghana from the more than 3,000 free surgeries performed since 2003, as children grow into productive adults.

The Critical Gap: Lack of Systemic Integration

Despite this success, the care remains largely project-funded and donor-dependent. It is not yet formally integrated into Ghana’s mainstream health architecture, specifically the National Health Insurance Scheme (NHIS). This is the core of the current advocacy push. Dr. Ernest Asiedu, Director of the Medical and Dental Unit at the Ministry of Health, has signaled government commitment to changing this. The goal is to move from a charitable, episodic model to a sustainable, government-backed system under Universal Health Coverage (UHC).

Integration would mean:

• Cleft care is a covered benefit under NHIS, removing financial barriers permanently.
• Training and equipment become part of standard health system budgeting.
• Early detection and referral pathways are established in routine prenatal and newborn care.
• The social message shifts: cleft care is a basic health right, not a charitable favor.

This policy shift is the single most important step to eradicate the stigma. When a service is normalized and universally accessible, the shame associated with needing it diminishes.

Practical Advice: For Families, Communities, and Policymakers

For Families Affected by Cleft

• Seek Care Immediately: Contact the National Cleft Centre, a Smile Train partner hospital, or your regional health directorate. Surgery is safe and can be done as early as 3-6 months of age.
• Nutrition First: For newborns, use specialized feeding bottles or techniques (e.g., maxillary plates) provided by cleft centres to ensure the baby gains weight before surgery.
• Connect with Support Groups: Find other families who have been through the journey. Peer support is powerful for combating isolation and sharing practical tips.
• Educate Your Community: When ready, share accurate information. Explain that cleft is a medical condition, not a curse or punishment. Use your child’s successful surgery as a story of hope and normalcy.

For Community Members and Leaders

• Challenge Myths: Actively correct misinformation. State that clefts are common birth differences with medical causes.
• Offer Support, Not Stigma: Welcome families. Help with chores, childcare for siblings, or transportation to appointments. Social inclusion is a form of care.
• Amplify Positive Narratives: Celebrate children who have received treatment. Visibility normalizes difference.
• Engage Local Leaders: Chiefs, religious leaders, and teachers have immense influence. Encourage them to speak out against discrimination and promote acceptance.

For Health Advocates and Policymakers

• Prioritize Integration: Lobby for a specific line item for cleft and craniofacial care in the NHIS benefits package and the national health budget.
• Mandate Training: Incorporate cleft care modules into the curriculum for midwives, pediatricians, and nurses for early identification and counseling.
• Strengthen Referral Networks: Establish clear protocols from community health centers to regional cleft hubs.
• Measure Outcomes: Track metrics like surgery rates, speech outcomes, and school attendance of treated children to demonstrate the program’s value.

Frequently Asked Questions (FAQ)

Is cleft lip and palate surgery safe?

Yes. When performed by trained, experienced plastic surgeons in appropriate facilities, cleft surgery is very safe. The National Cleft Centre and Smile Train partner hospitals adhere to strict international safety protocols. The risk is comparable to other common pediatric surgeries.

At what age should a child have cleft surgery?

Timing depends on the child’s health and the specific procedure. The primary lip repair is often done between 3-6 months of age. The palate repair typically occurs between 6-12 months to optimize speech development. The holistic model ensures each stage is timed correctly.

Why is the stigma so strong in Ghana and similar communities?

Stigma stems from a lack of public understanding, historical beliefs linking disability to spiritual causes, and the visible nature of the condition. When a child looks different, ignorance can lead to fear and exclusion. The solution is education, exposure, and the normalization of treatment.

How can I support this cause if I’m not in Ghana?

You can support organizations like Smile Train financially, which directly funds surgeries and local capacity building. You can also raise awareness on social media, challenge cleft-related bullying and stereotypes in your own community, and advocate for comprehensive health coverage for all congenital conditions in your country.

Will the child look “normal” after surgery?

Surgery aims to restore function (feeding, speech) and create a more typical anatomical appearance. While a small scar may remain, the result is a significant improvement that allows the child to blend in socially. Additional procedures like speech therapy and orthodontics are often part of the long-term care plan.

Conclusion: From Concealment to Celebration

The image of a mother hiding her child in a polythene bag is a searing indictment of societal failure. It represents the ultimate cost of stigma—a cost paid by the most vulnerable. However, Ghana’s response offers a powerful blueprint for change. The combination of world-class surgical care at the National Cleft Centre, the unwavering commitment of partners like Smile Train, and the growing political will for system integration presents a historic opportunity.

The transition from donor-funded project to government-backed, universal health benefit is the key that will unlock the door for every child. It will send an unequivocal message: a cleft is a medical condition, not a social stain. It will empower mothers to carry their children openly, with pride in their journey toward health. The goal must be a future where no parent feels compelled to hide their child, where seeking care is an act of love met with professional support, not social scorn. The health system has the power to heal not just faces, but the social fabric that marginalizes them.

Sources and Further Reading

• World Health Organization (WHO). (2020). “Congenital Anomalies: Fact Sheet.”
• Smile Train. (2023). “Global Impact Report & Annual Financials.”
• Ghana Health Service. (Various Years). “Maternal and Child Health Reports.”
• Ministry of Health, Republic of Ghana. (2022). “Policy on Universal Health Coverage.”
• National Cleft Centre, Kumasi. Official Publications and Patient Outcome Data.
• Obiri-Yeboah, S. et al. (2021). “Establishing a Sustainable Model for Cleft Care in West Africa: The Ghana Experience.” Journal of Plastic, Reconstructive & Aesthetic Surgery.
• World Bank. (2021). “Universal Health Coverage (UHC) in Ghana: Progress and Challenges.”