Bringing Hope, Future to Cleft Lip and Palate Babies Through Smile Train

  “Congratulations! Congratulations, Sekina (as she wants to be addressed because of fear of stigma against the family)” well-wishers greeted as they visited the ward in excitement to felicitate with Sekina on her new born baby boy.

After a tedious labour at the University of Abuja Teaching Hospital, Gwagalada, Sekina has become a mother for the first time in her life. Her joy and that of her husband, Ahmed know no bounds

The birth was more special because the baby is expected grow and succeed his father as the Sarki (Chief) Agwandodo when he is no more. The midwife has taken the newly delivered baby away to clean him up.

Not long after, she emerges and hands that baby over to Sekina. The impact was instant. One can hear the drop of a pin.

The disappointment on the Sekin’a face is indescribable. Only one question ran through her mind: `How have I offended the gods to deserve this?

Her son had been born with a defect, cleft lip and palate! Suddenly the joyous atmosphere has switched to a suppressed sad feeling,

Ahmed’s newly born son, Musti, joins the growing number of children born with a cleft lip and palate globally, the birth defect that occurs occur when a baby’s lip or mouth do not form properly during pregnancy.

The World Health Organisation says orofacial clefts are common birth defects, affecting one newborn in every 700 live births globally while approximately 13,150 babies are born with cleft annually in Francophone African countries alone.

An analysis conducted by the National Library of Medicine including 602, 568 children explored the prevalence rate of underweight in children with cleft.

It said the overall prevalence of underweight at the time of primary cleft surgery was 28.6 per cent, well above the global underweight prevalence in children under-5 without cleft estimated at 13.5 per cent.

“Every day over 200,000 children are born into the world with this birth abnormally, out of that growing indices, seven billion of those babies, have no access to safe surgeries.

“They are likely to stay malnourished due to quality access to healthcare and good food. Some may never get adequate nourishment before their first surgeon’s appointment”, it said.

According to a report by U.S.-based Cleveland Clinic, in the U.S. about one in every 1,600 babies is born with cleft lip with cleft palate.

Similarly, one in every 2,800 babies is born with cleft lip without cleft palate, and about one in every 1,700 babies is born with cleft palate

In many African local communities, such children are considered to be a curse, some sorts of punishment from the gods. It is a taboo for them to inherit the throne.

Speaking about her son’s condition and struggles, Sekina said: “It has been weeks now and none of our relatives or neighbors has visited us.

“In fact when we have any visitor from outside of our neigbourhood, I hide him in the inner room. Feeding him has been very challenging.

Experts say cleft lip and palate are caused by tissues of the face not joining properly during development.

According to them, it is a common birth condition which causes opening or splits in the roof of the mouth and lip.

According to WebMD, the cause of cleft lip and cleft palate is unknown in most cases, and the conditions cannot be prevented as most scientists believe clefts are due to combination of genetic and environmental factors.

Dr Amina Abubakar, Consultant Plastic and reconstructive Surgeon, University of Abuja Teaching Hospital, Gwagwalada, said that stigma, myths and misinformation around cleft are the reason why cleft lip and palette patient’s suffer.

According to her, Smile Train, the largest global cleft-focused NGO, has recorded tremendous impacts while providing pre and post-surgery support to put back smiles on the faces of these patients.

“No child born with cleft should die, in 300 corrective surgeries done, I have never lost any cleft patient, I can say it is a 100 per cent guarantee of successful surgeries.

“Most times, when we go into the communities’ for awareness about cleft, we find that indigenes are not willing to present their relatives or loved ones for help due to a lot of traditional beliefs.

“This needs to stop, cleft is a birth defect with yet to be identified causes and not a curse”, she said of the Smile Train initiative.

Prof. Emmanuel Ameh, a Paediatric Surgeon at National Hospital, Abuja, said there is the need for adequate attention and care to end preventable deaths among babies born with cleft.

“Some of these babies die before they get to the hospital due to malnourishment, lack of proper care”, she said on the sideline of a two- day nationwide media workshop organised by Smile Train, in Abuja.

Smile Train, an NGO, has active cleft care programs in 41 countries across Africa, with more than 245 partners and over 255 partner hospitals throughout the continent.

The NGO has made strategic investments in education and training, including collaborating with Scottish Charity, KidsOR; College of Surgeons of East, Central and Southern Africa (COSECSA).

It also partners the West African College of Surgeons (WACS) to provide scholarships in various categories.

Ameh, also a Chief Consultant at the Hospital, said Smile Train was making available basic equipment to ensure cleft babies breathe well before getting surgeries.

“There is hope for these babies and adult alike. Smile Train has also established a helpline and these persons will be trained on how to get help via contacting the helpline,” he explained.

The NGO said it is not unconscious of the importance of research and capacity building in helping these special children in need.

“Smile Train continues to invest in research through in-person workshops, online sessions and mentorship, leading to the creation of cleft related research work to inform good policies in the region”, said Susannah Schaefer, the NGO’s President, in a statement.

Non-governmental and non-profit organisations have continued to play major roles in advancing the course of humanity in such as areas as treatment and care for children with special health challenges.

Governments and well-meaning individuals should build a more robust synergy with them to bring succor to more people in need. (NAN)