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Oral Cleft and Lip Palate caregivers rendered their emotional testimonies of how different organisations come to their aid to put smiles on their faces.

The caregivers, 43 of them, who meet every week at the University of Lagos Teaching Hospital (LUTH) facility, last week, shared their stories in words and pictures at the Photo-voice Oralfacial Clefts exhibition.

Oral cleft and cleft palate is a birth condition which is an opening(s) or splits in the roof of the mouth and lip, and can occur alone or as part of a genetic condition or syndrome.

The photo-voice exhibition held at Surgical Skills Center of LUTH, Idi-Araba, in Lagos, had scores of the caregivers present and they narrated tales on how they almost abandoned their children with cleft but for the intervention of Smile Train and LUTH who came to their rescue.

Mrs Adebayo, who was in tears, shared how she discovered her two-year old daughter, Farida, has cleft lip as well as a hole in the heart. She was told about the Smile Train-sponsored patient intervention in LUTH and pleaded for succour as she had been turned down many times by other agencies.

One of the male caregivers, Mr John Obalade, spoke of how he refused to acknowledge Joseph, the cleft lip-child his wife had for two years, refusing to recognise him as his son. Obalade who was full of commendation for the Department of Cleft Palate and Smile Train for the ‘miraculous intervention’, disclosed that his son is doing well now in school to his surprise and playing football as a beneficiary of the holistic therapy of surgery, nutrition, speech therapy which LUTH gives.

Others who spoke narrated how they were stigmatised by neighbours and family members because of their children’s conditions as they battled thoughts of abandoning the children in the hospital but for the care group who became their saving grace.

To one of the beneficiaries, the Smile Train’s patient intervention made all the difference to her, her child and family as they were well taken care of and given stipends because their jobs were affected.

Chief Medical Director of LUTH, Professor Wasiu Lanre Adeyemo, accompanied by the Provost of the College of Medicine, UNILAG, Prof D. A. Oke, noted that the photo exhibition has shown the success story of the cleft lip and palate section of the institution. He stated that more would be done to improve on research and standards, adding that the ‘Cleft Lip and Lip Palate’ section in LUTH takes pride as first among all in Africa in taking a holistic approach in tackling the medical condition.

“I am elated to see this day and the glowing faces of caregivers who shared how the cleft caregivers cluster group with the support of Smile Train providing the fund, have impacted on their lives. I commend our own, Prof M.O Ogunlewe for leading the unit and putting smiles on faces of scores of these caregivers. It has been eighteen years of hardwork as we are at the fore front of providing solutions to cleft lip and palate in Africa, not just in surgery but providing nutrition, speech conditioning of the child,” said Adeyemo.

One of the organisers, Prof, Azeez Butali, stated that the photo voice exhibition was a participatory research effort and the results would be documented, as it showed the extent of stigmatisation of the victims. “This is a participatory research where patients tell their stories themselves. They were trained to take pictures of what symbolizes their moments, what they go through. There is a picture of two kids fighting, made by a caregiver who disclosed that her husband beats her because of their child with cleft lip, and this is a case of domestic abuse.

“Another picture shows a road that is rough which speaks of a mother who is depressed because of coping with cleft lip child and the accompanying stigmatization. We have another of the thirty photos displayed at the exhibition that depicts a mother that is happy and relieved anytime she is in the clinic with other caregivers. All these inform us the researchers on the vivid impact of cleft lip medical condition on parents and caregivers, the psychosocial support given to the caregivers who are forty-three in number and the empathic support, Smile Train gives. We got seventy-five pictures in total from the photo voice; the other forty-five were used for the documentary which we showed to the public.”

Speaking further, Prof Butali, an alumnus of College of Medecine, LUTH, who is also an Endowed Professor of Oral Pathology, Radiology and Medicine at the University of Iowa, said: “This photo voices is another way to tackle stigmatization and reduce it to the barest minimum. There is a picture of a bird being isolated, the woman doesn’t go out. She wakes up, makes her bed and go back to sleep. She avoids going out because she is being stigmatized by neighbours around her. They just greet her from a distance and do not come near her and her child because they feel their kids will also have the catch the oral-cleft condition. So, it’s that bad. We want to inform the society and sensitize them that this people are not ‘abami’ (meaning strange persons), it’s just a birth defect and it is curable, please accept them.

“There is a young man who is in 300L in LASU (Lagos State University). He was going to drop out of school two years ago before I met him because of cleft. I had to encourage him to go back to school, I put him on scholarship, pay his school fees and give him N10,000 every month. He says he wants to do business; I gave his start-up fund just to encourage him and keep him in school because cleft should not have prevented him from going to school. He has a second class upper grade. For me, we need to educate the society to accept them.”

Smile Train is the largest cleft-focused charity founded in 1999 as an international non-profit organization that supports free cleft lip and palate care for children and adults across 95+ countries globally.

According to Paul Lobi, the Associate, Education and Training for Africa, Smile Train has supported 2 million+ cleft surgeries for people of all ages since 1999. He added that since 2002, the organization has supported 50,000+ cleft interventions across Nigeria and given sundry supports to caregivers. He urged the society not to stigmatize caregivers of children born with a cleft as it is not a death sentence and there is a cure for it.

Prof Olugbemiga Ogunlewe, revered as the mother of Smile Train-sponsored Cleft Lip and Palate clinic at the Lagos University Teaching Hospital, Idi-Araba (LUTH), noted that the unit takes care of caregivers and children from infancy to their teenage years with the INGO providing the funds. The professor and consultant in Oral & Maxillofacial Surgery, College of Medicine, LUTH, speaking on her experience working with the caregivers said, “Caring for cleft lip and palate has been rewarding adventure for me and the intervention of Smile Train in 2006 swelled our care of patients as we could only care for a few before now. We have forty-three caregivers made up of two men and forty-one women in our cluster unit and they have different stories. Caring for them goes beyond the surgery cost of N300,000 but providing nutrition, speech conditioning and other areas of therapy.”

Prof Adeagbo, a Professor on Global Heath from the University of Iowa, United States noted that the event would impact on the caregivers even as it will inspire the community to empathise with them as the rate stigmatization will reduce.
The national president of Association of Movie Producers (AMP), Amb Queen Blessing Ebigieson who was part of the dignitaries, empathized with the caregivers and urged them not to relent in caring and a raising their cleft lip-conditioned children as there is a cure and with the partnership at the forum, hope is present. Ebigieson advocated for a movie that would throw more light to the cleft lip and cleft palate, educating the society on the need to embrace the caregivers and not stigmatize.
According to statistics, the prevalence of orofacial clefts in Nigeria is 0.5 per 1000 live births. A higher proportion of patients in this study had clefts of the primary palate alone. This is consistent with previous studies done in Nigeria and Zambia.

LEADERSHIP reports that Professor Butali, the management of Lagos University Teaching Hospital (LUTH), non-governmental organisation, Smile Train; Insight Health Consultancy, and United Nations Population Fund (UNFPA) organised the event.