A Mother carrying a child with a cleft. Photo by Andrea Onuoha.
Try to imagine how a smile will sit on the face of baby with cleft lip and palate after a corrective Surgery.
ANDREA ONUOHA reports how a medical outreach is putting smiles on the faces of mothers who have lost hope on seeing their afflicted innocent babies smile.
THE birth of a child is commonly an occasion for joy to parents. When the nurse handed Chinenye Benjamin her baby, all wrapped up, her joy was wrenched from her as her expectant eyes fell on her baby, Amanda. This wasn’t the angelic face of her first child, she had fantasized all this while; something was grotesquely wrong. The baby in her hands had a strange defect, the innocent face with a lip curled out of shape, throwing the face into a wicked snarl.
She wept profusely, and couldn’t be consoled. Her anguish burned the more as she watched the baby struggle to suckle her breast.
“I was confused when I gave birth to my baby with a cleft lip. It was strange to me, so I started crying. I cried for three days because I hadn’t seen this before,” Benjamin recalled.
She complained to the Doctor, “after several weeks of trying to breastfeed my baby with much struggle, the Doctor urged me to not to give up lest Amanda would be malnourished,” she recalled.
Amanda was born on August 30, 2020 in a maternity at Oba, Anambra State with a Cleft, a birth defect characterized by a split either in the lip or a hole in the palate.
Amanda Benjamin after a corrective cleft surgery. Photo by Andrea Onuoha.
A Global Problem
According to the World Health Organization, cleft lip and palate is a major oral health condition contributing to the global burden of oral disease, with complete rehabilitation possible if treated appropriately. WHO estimates that more than 200,000 children are born with cleft lip and palate in the world annually. One in every 500-700 children is born with it globally. The data further noted that at least 19,000 children are born with the condition every year in Africa, 12,000 of who are in West Africa and 6,500 in Nigeria.
Although the estimated 6,500 cases of cleft defects in Nigeria is in itself staggering, the world’s largest cleft-focused organization, Smile Train, believes that figure might be a conservative estimate. “We still have some children we are unable to capture at birth either because they are not born in a structured hospital or their birth has not been registered,” Nkeiruka Obi, Smile Train’s vice president and Africa director explained, adding that some children were likely delivered on farmlands, mountains or other such locations where record-taking would be severely hampered. “So I’m sure that numbers should be much more,” she said. Obi is nonetheless convinced that Smile Train tackles about 80 to 90 percent of the estimated figure.
At the local level, though, several myths have been spun around the ailment. Researchers at the Lagos University Teaching Hospital (LUTH) in a 2016 study found that 35.3 percent of respondents believed the deformities were an act of God. Another 5.9 percent believed the birth disorders were the handiwork of an evil spirit, and 9.8 percent thought the condition was the result of wicked parenthood.
The study further revealed that 73 percent of mothers and 59 percent of fathers felt ashamed having a child with a labial or facial cleft. Two of the respondents considered abandoning the baby at the hospital, while bout a quarter of the respondents wished the child was never born.
In Southeast Nigeria (where this story was drawn from), this deformity is similarly shrouded in myths, with the predominant perception being that children born with cleft lips and palates are the outcome of a spiritual attack. Hence the strong urge to seek a spiritual solution rather than medical attention.
For Obi, however, Smile Train will not relent in creating awareness, given it is key to demystifying cleft deformity in communities across Nigeria. “Awareness is key. But most instructively we are a superstitious-driven culture. We know that with any deformity, whether it is acquired or congenital, people would always impute such to some spiritual cause. We have to re-educate our people, have that very deliberate and intentional way of enlightening, sensitizing the population on what is the cause of cleft and the solution to the treatment of cleft,” she said.
A Whiff of Hope
Amanda’s mother persevered against all odds, taking care of her child until a glimmer of hope appeared. A distant relation who works as nurse at a teaching hospital learnt of her ordeal, and quickly directed her to the hospital where cleft surgeries were done free of charge. When Benjamin arrived at the hospital, she “saw other parents with cleft babies and was relieved a little”.
Her excitement intensified after Amanda had her first corrective cleft surgery, and came out hale and hearty.
“Their works are quite good, and the fact we didn’t have to pay for the surgeries makes me even happier. So, I thank Smile Train immensely,” she said, beaming with joy.
A Cleft Surgeon Speaks
It is typically all smiles for mothers after their babies undergo cleft surgery. But it’s no less so for surgeons who perform such surgeries. For Professor Titus Osita Chukwuanugo, the surgeon who performed Amanda’s cleft surgery at Dinma Specialist Hospital Nnewi, there was also a huge sense of pride and satisfaction. He commends Smile Train for their global commitment to charity, and how they have been transforming lives all over the world, noting that the organization ensures that the medical procedures abide by global safety standard anywhere the surgery is performed. “We take safety as the number one priority in all the cleft surgeries. Smile Train maintains the quality of medical services that would normally be offered to someone in America. We observe the same quality standard you would find in any developed countries,” he said.
Professor of Plastic and reconstructive surgery, Ostia Chukwuanugo.
Professor Chukwuanugo also dispelled misconceptions about cleft lip and palate, explaining that it is a congenital defect, and not a spiritual attack. “Cleft lips and cleft palate are congenital anomalies. Congenital anomalies are those things we are born with or acquired inside the womb before birth. The way human beings are made they develop inside the womb, where parts of the body fuse or join together. Cleft palate is failure of that fusion or failure of the parts of the body coming from the left side, right side from meeting properly in the midline where they suppose to meet. As a result, there will be a gap,” he said.
For thirteen years, Chukwuanugo has carried out numerous successful cleft surgeries, all sponsored by Smile Train at the NnamdiAzikiwe Teaching Hospital Nnewi. He would later perform similar surgeries at Dinma Specialist Hospital Nnewi after it was accredited by Smile Train in 2014. “I started partnering with Smile Train in 2009 and it’s almost 13 years now. The journey has been smooth in Teaching Hospital and eventually in 2014 at Dinma Specialist Hospital, Nnewi, after it was also accredited for cleft surgery,” he explained.
On how the partnership works, the professor of plastic and reconstructive surgery pointed out that Smile Train usually visits to assess hospital facilities, personnel – surgeons, nurses – and the entire infrastructure available for cleft surgery, before such canters could be approved. “Since 2009, we have been maintaining a good partnership with Smile Train. We are happy and the patients are also happy,” he added, urging the public to take advantage of the free cleft surgery.
“My message to the public is to bring these children up for surgery. Indeed, we do Cleft week every year. We dedicate one week, go to the village, and do radio jingles, sponsor adverts in medical brochures. All these are to create awareness. And all these services are offered free of charge and sponsored by Smile Train,” he said.
For those who simply can’t afford commuting to the surgery centers, there is an added incentive: free transportation to the venue at Smile Train’s expense.
Spreading the Smile
One of the mothers who took advantage of the persistent awareness of Smile Train was Mrs Chinonye Ugwu. She heard a jingle on the radio advertising free cleft surgery sometime in her state, and decided to take a leap of faith.
Emmanuella Chinedum. Photo by Andrea Onuoha
Her daughter, Emmanuella Chinedum, was born with cleft palate five years ago. She grew up unable to articulate words properly, a deficiency that caused her embarrassment before her school mates. “When she was a baby, we noticed an obstruction inside the mouth preventing her from suckling properly. But we managed to feed her till she grew up. As she grew, we noticed she could not speak clearly and we took her to a specialist for an examination,” Ugwu narrated.
It was then she discovered that her daughter has a cleft palate. So when she heard about the free surgery, she decided to take her to the advertised hospital. She remains glad that she did, especially as it was done without a fee.
“She did the first palate surgery last year in 2021 and the second one in May 2022. She is okay and sound and gradually the speech will correct perfectly. I appreciate what Smile Train is doing. It is not easy considering it’s free. I thank Smile Train and the doctors that performed the surgery,” Ugwu said, her excitement still evident
Smile Train – Carving an Enviable Niche
Smile Train’s Paul wearing the slogan shirt@CAMA. Photo by Andrea Onuoha.
Smile Train is providing training, funding, and resources to empower local medical professionals in more than 70 countries to provide 100 percent free cleft surgery and other forms of essential cleft care in their own communities.
Smile Train has delegates across few states in Nigeria whose work is to organize medical outreaches. The organization achieves its medical aim through local orthopedic surgeons where they offer free cleft surgeries to communities.
Another distinguishing hallmark that the organization prides itself on is the fact that after the initial surgery, there is a secondary surgery, followed by speech therapy aimed at helping patients to speak properly. There is as well orthodontic treatment, which is the rearrangement of the teeth, and orthognathic surgery to correct the bone nonalignment of the upper and lower jaws.
Smile Train; the Score Card
According to the Vice President and Africa Director for Smile Train, the organization has increased its medical capacity in every aspect of cleft surgery. For example, it has deployed a Solar Surgical system, an innovation, which Nkeiruka Obi described as “our greatest feat this year, 2022.”
Vice President and Africa Director for Smile Train, Nkeiru Obi.
She explained further that, “it is our most profound innovation. We have partnered with the Scottish Charity to deploy the first ever Solar Surgical System. We want to address Clean Energy and manage the problem of irregular supply of electric power.
“It’s a game changer for us because it is the first of its kind, and it is a win-win in ensuring that we can deliver surgical care to our patients with lower risks or avoidable casualties.
“The work is progressing and we are hoping that in the next few months we would be in a position to deploy a very first set of the solar solution. The aim is to have theatres equipped with the new solar surgery system.
“It has created a platform for us to be eco-friendly and respond to the challenge of climate change. This singular innovation and investment has caused a huge transformation, and we are certain that through this, a gamut of the sustainable development goals would be significantly actualized.”
In explaining the urgency of the situation for Smile Train, she acknowledged that “one of the challenges that we have in low and middle income countries in Africa fall is the issue of power outage. When there is a cut in electric power supply during surgery, it could trigger such adverse effects which may affect the success of the surgery. To take control of that situation that is therefore one of the things we have also achieved this year.”
She admitted that Smile Train is not resting on its oars as “we are collaborating with the Federal Ministry of Health on the implementation of a National Surgical Plan as well as establishment of the first e-registry.
“This e–registry houses data on congenital defects; children born on any form of deformity. With this registry we are able to capture their details, keep surveillance on them, expedite their treatment management, and effect referrals.”
The organization also builds research capacity of Scientist in Nigeria. Besides the training of local surgeons and journalists, Smile Train is also into other areas of capacity building and development of infrastructure