The challenges faced by parents of children born with cleft and palate deformities were recently highlighted in a photo exhibition focusing on orofacial clefts.
Organized by Professor Azeez Butali in collaboration with Lagos University Teaching Hospital and Smile Train, the event provided caregivers with a platform to share their experiences at the Surgical Skills Centre in LUTH, Lagos.
This exhibition, a culmination of 18 years of research, shed light on the mental health aspects and showcased the psychosocial impact on caregivers.
The involvement of the academic community allowed for a deeper understanding of the challenges faced by families dealing with cleft lip and palate conditions.
The Chief Medical Director of LUTH, Professor Wasiu Lanre Adeyemo, and Professor David Oke, the Provost of College of Medicine, UNILAG, expressed pride in the success stories shared by caregivers.
They emphasized the commitment to enhance research and elevate standards in addressing cleft lip and palate deformities. UNILAG’s proactive approach in tackling these medical conditions was highlighted, affirming its position as a pioneer in adopting a comprehensive strategy in Africa.
Adeyemo mentioned , “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 their lives. I commend our own, Prof Olugbemiga 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.”
Professor Butali stated that the photo exhibition was a collaborative research project that allowed participants to share their experiences, and the findings will be documented to highlight the significant stigma faced by individuals with cleft lip and palate deformities.
He stated, “This is a participatory research where patients tell their stories themselves. They were trained to take pictures of what symbolizes 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 stigmatization.
“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 photo voice; 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 sensitize 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.
Paul Nobi, Associate Head of Education and Training in Africa for Smile Train, announced that the organization has provided over two million interventions globally since its founding in 1999, with 2,000 of those interventions taking place in Nigeria since 2006.
He emphasized the importance of not stigmatizing caregivers of children with cleft lips, as it is a treatable condition.
Meanwhile, Prof Ogunlewe, a pioneer in the Smile Train-sponsored Cleft Lip and Palate section of LUTH, highlighted the unit’s comprehensive care for patients and caregivers from infancy to age 18, made possible through funding from the NGO.
He noted , “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.”
Queen Blessing Ebigieson, President of the Association of Movie Producers, showed empathy towards caregivers of children with cleft lips, encouraging them to continue their dedicated care.
She acknowledged the treatability of the condition and expressed hope through the collaborative efforts at the event.
Ebigieson suggested creating a movie to raise awareness about cleft lip and palate deformity, promoting acceptance and reducing stigma.
Caregivers in attendance shared heart-wrenching stories of almost giving up on their children with cleft conditions, but found hope through Smile Train and LUTH’s interventions.
Adebayo Farida, a caregiver, tearfully recounted discovering her two-year-old daughter’s cleft lip and heart defect, and the struggles she faced before finding help through Smile Train’s program at LUTH.
