Smile Train, LUTH amplify cleft lip caregivers’ struggles via photovoices exhibition

The daily ordeals and struggles faced by parents of children born with cleft and palate deformities were recently amplified through a photo-voice orofacial clefts photo exhibition organized by a Professor of Oral Pathology, Radiology, and Medicine, Azeez Butali, the Lagos University Teaching Hospital, and the international non-governmental organisation, Smile Train.

The event, which gave caregivers the opportunity to vividly share their stories, was held at the Surgical Skills Centre, LUTH, Idi-Araba, Lagos.

The exhibition, which is a product of 18 years of research, focused on mental health and also allowed the academic community to view the psychosocial impact of cleft lip and cleft palate on caregivers.

Speaking about the event, the Chief Medical Director of LUTH, Professor Wasiu Adeyemo, who was accompanied by the Provost of the College of Medicine, UNILAG, Prof. David Oke, noted that the exhibition, as seen through the stories shared by the caregivers, showcased the success stories of the cleft lip and palate section of the institution.

He assured that more would be done to improve research and standards, adding that UNILAG takes pride in being the first institution of learning in Africa to take a holistic approach to tackling cleft lip and deformed palate medical conditions.

Adeyemo said, “I am elated to see this day and the glowing faces of caregivers, who shared how the cleft caregiver’s cluster group with the support of Smile Train providing the fund, have impacted on their lives. I commend our own, Prof Ogunlewe for leading the unit and putting smiles on the faces of scores of these caregivers.

“It has been 18 years of hard work and we are at the forefront of providing solutions to cleft lip and palate in Africa, not just in surgery but in providing nutrition and speech conditioning of the child.”

On his part, Prof Butali, explained that the photovoice exhibition was a participatory research effort and that the result will be documented, as it showed the extent of stigmatisation faced by the victims.

He stated, “This is a participatory research where patients tell their stories themselves. They were trained to take pictures of what symbolises their moments, and 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 a cleft lip child and the accompanying stigmatisation.

“We have another of the thirty photos displayed today at the exhibition that depicts a mother who is happy and relieved anytime she is in the clinic with other caregivers.

“All these inform us the researchers of 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 75 pictures in total from the photovoice; the other 45 were used for the documentary which we showed to the public.

“This photo voice 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 goes 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 catch the oral cleft condition. So, it’s that bad. We want to inform society and sensitise them that these 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 at the Lagos University (Lagos State University). He was going to drop out of school two years ago before I met him because of his cleft. I had to encourage him to go back to school, I put him on a scholarship, paid his school fees and gave him N10,000 every month.

“He said he wants to do business; I gave him a start-up fund just to encourage him and keep him in school because cleft should not have prevented him from going to school. He graduated with a second-class upper grade. For me, we need to educate the society to accept them,” Butali stressed.

The Associate Head of Education and Training in Africa, Smile Train, Paul Nobi, said the Cleft Lip and Palate Care International, an NGO, established in 1999, had recorded two million patient interventions in more than 90 states where it operates globally.

He added that it had recorded 2000 patient interventions in Nigeria since 2006, providing surgery cost and sundry supports for caregivers.

He urged society not to stigmatise caregivers of cleft lip children as it is not a death sentence and that there is a cure for it.

Meanwhile, Prof Ogunlewe, who is revered as the mother and grand mum of Smile Train-sponsored Cleft Lip and Palate section of LUTH, noted that the unit takes care of victims and caregivers from infancy to the teenage period of 18 years with the NGO providing the fund.

He said, “Caring for cleft lip and palate has been a 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 43 caregivers made up of two men and 41 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.”

The President, Association of Movie Producers, Queen Ebigieson, who was part of the dignitaries at the event, empathised with the caregivers and urged them not to relent in caring for and raising their children born with cleft lips.

She noted that there is a cure for the congenital defect and that with the partnership at the forum, there is hope.

Ebigieson advocated for a movie that would shed more light on cleft lip and palate deformity, and educate society on the need to embrace the caregivers and not stigmatise them.

The caregivers, who turned out in their numbers shared a myriad of sad experiences, basically on how they almost abandoned their children with cleft condition but for the intervention of Smile Train and LUTH.

One of them, Adebayo Farida, who was in tears, recalled how she discovered that her two-year-old daughter had a cleft lip medical condition and a hole in the heart.

She recalled being told about the Smile Train patient intervention in LUTH and pleaded for help as she had been turned down many times by other organisations.