…Smile Train changing narrative with free corrective surgeries

By Chioma Obinna

The birth of a new baby anywhere in the world is a celebration, but one of the uncommon news items to hear from doctors after delivery is, “Something is wrong with your baby.”

Mrs Grace Ubochi, Aminat Adamu and thousands of Nigerian mothers all felt the same way when they were told that their babies had a birth defect—a cleft lip and palate.

What cleft lip and palate is:

Cleft lip and palate are birth defects that happen while a baby is developing in the uterus.

Medical experts say in the sixth to 10th week of pregnancy, the bones and tissues of a baby’s upper jaw, nose, and mouth normally come together (fuse) to form the roof of the mouth and the upper lip. If the tissue in the developing mouth and the palate don’t fuse, a baby could be born with a cleft lip, palate, or both.

This is the case of Grace and thousands of other mothers who gave birth to babies with a cleft lip or palate.

According to the World Health Organisation, WHO, estimates, globally, one in every 700 children is born with the defect, and a cleft occurs in one in 1,200 children in Africa, while 19,000 cleft children are born every year in Africa.

In Nigeria, a consultant oral and maxillofacial surgeon and coordinator of the Smile Train programme at the Lagos University Teaching Hospital in LUTH, Prof. Gbenga Ogunlewe explained that though there are no current national data on the prevalence of the condition, hospital-based data showed that 1 in 2,000 live babies are born with cleft lip and palate in Nigeria annually. 

It is usually not a good sight to behold after nine months of pregnancy.   Stories abound of women who fainted after they were shown their babies a few minutes after delivery.

For emotionally wrecked mothers like Grace and Aminat, the first sight of the baby’s face threw them off balance. Grace broke down in tears. With immense pain in her heart, she shouted. “Are you sure this is my baby?”

Thanks to the nurses at one of the hospitals in Lagos, where she gave birth to Daniel two years ago, they were able to calm her down.

“I was sedated. I thought I was daydreaming, only to wake up and find that it was real,” she said.

The journey begins

A few days later, mother and child were discharged, and the journey to only God knows where begins.

Grace and her husband were confronted with the pains of nursing and reserving explanations for neighbours about what happened to their new baby.

Although the doctors said that their baby, Daniel has cleft lip and palate, a condition that is treatable through surgery, they lack the resources and information needed to tackle the challenge.

Worse still, in poor-income countries like Nigeria, these children face a lot of social rejection. They are disadvantaged in many areas, including education, employment, marriage, and community.

In some communities, they are tagged as witchcraft. Some are regarded as punishment to the parents from the gods. Many marriages have been broken due to ignorance on the part of couples.  These children’s situation is worsened by the difficulty of coping with life, even at the most basic level, like feeding. There are also barriers to care, as many of the caregivers have little or no maternal knowledge about caring for these newborns.

Many parents also cannot afford three square meals a day and cannot afford the life-saving surgery.

Emotional impact on families

However, Grace had not only difficulties in providing resources to pay for the hospital bill but also lacked the needed information on caring for her baby before the life-saving procedures.

Apart from the financial burden, the birth of Daniel took away their smiles. Their love, which became stronger the moment Grace became pregnant, disappeared.

All the joyous moments they shared and the love and happiness in their home vanished into thin air.

At two weeks old, Daniel’s health began to deteriorate.

She recounts that “his body began to reduce. We took him to the hospital and found out that it was a result of the cleft lip and palate, which prevented him from breastfeeding. Each time I feed him, the breast milk comes out of the nasal cavity, causing him to suffocate.

“Our pains grew day by day. We were not just worried about the scar but also had to explain to people the condition we were in, and the worst part was the challenges I faced in trying to feed the baby. He was not taking breastmilk and became malnourished.”

Daniel is one of the 2.5 million children under the age of 5 who suffer Severe Acute Malnutrition annually in Nigeria, according to the United Nations Children’s Fund, UNICEF.

“I will never forget one moment when I almost abandoned everything; it took the counsel of my doctors to bring me back to my senses. It is draining and can affect one’s mental health. We were told that he has to be in good health before the surgery can be done. I almost lost hope, but God was on my side and with the help of the doctor, he picked up and was later operated on,” she said in an emotion-laden voice.

Sadly, Daniel came down with malnutrition.  “It was a harrowing experience for me. But I never gave up. All you need is patience and courage,” Grace said. Today, Daniel has been repaired thanks to the Smile Train team at the Lagos University Teaching Hospital, LUTH.

Aminat’s plight

Like Daniel, Aminat was born with cleft lip and palate. She had trouble feeding, breathing, and speaking, and often cried in pain and frustration.

Aminat’s parents, Adamu and Binta, loved their daughter dearly, but they were poor peasants. Adamu was a fruit seller, while Binta hawked Fura. They had two other daughters, Laraba, 4, and Selimat, 2, but Aminat, just a baby, was their major concern. 

They could not afford the surgery that would make her normal like her siblings.

Residing in a remote village in Nigeria, where there was very little access to proper medical care, Aminat’s parents were hopeless and helpless and feared greatly for their precious daughter’s future.

However, a concerned neighbour told them about Smile Train, which provides free cleft surgery and care to children in need around the world. They decided to take Aminat to one of the hospitals there, hoping for a miracle.

After a long and tortuous journey, much of which was on foot, car, and foot, they arrived at the clinic, where they were greeted by friendly volunteers and doctors. They filled out some forms and waited for their turn.

They prayed and waited outside, hoping for the best. They were later attended to.  After the necessary examination, Aminat was certified fit for the surgery and it was successful. Her parents, Adam and Binta, could see a hint of her new smile through the bandages covering her face. They hugged Aminat as they shed happy tears and expressed gratitude to the Smile Train staff and the surgeon for their generosity.

However, not many children were lucky, like Daniel and Aminat, because their parents were not aware of the free surgery provided by the Smile Train. Many die of malnutrition due to poor nutrition, and lack of information, and resources, among others.

Some who survived to adulthood find it difficult to survive in a society where stigma and discrimination rule.  They are being discriminated against in their homes and bullied at school. Some have been given all kinds of names.

Threat to children’s nutrition

Unlike Daniel, Aminat did not come down with malnutrition. However, in countries like Nigeria, knowledge of maternal experiences with breastfeeding and support is limited. 

At an early stage in life, these babies begin to suffer even at the most basic level, such as coping with feeding.

Experts say babies born with cleft lip and palate face breastfeeding difficulties, which affect their nutritional status. This is because the babies lack the normal bone and soft tissue separation between the nose and mouth, and this causes the milk to get into the nose.

In a report published in the News Medical Life Sciences, Dr Ananya Mandel explained that both cleft lip and palate can be corrected through surgery, but until the deformity can be corrected by surgery, feeding the baby becomes a challenge since the cleft can prevent babies from forming a seal around the nipple and areola with his or her mouth and effectively sucking and removing milk from the breast.

For the Clinical Nutritionist and Smile Train Nutrition Advisor, Miriam Nabie, the severity of the cleft lip or palate (or both) affects an infant’s ability to suck and obtain enough nourishment for growth and development.

According to Nabie, good nutrition is key for infants with cleft lip and palate, as they need to build up resistance to infection, be strong for surgery, and have the nutrients needed to heal after surgery.  

Nabie in an interview with Vanguard shortly after a 5-day workshop in Lagos for nutritionists, dieticians, and nurses selected from Smile Train partner hospitals nationwide, confirmed that due to the inability of children born with clefts and palates to latch on the breast and feed properly, many of them are exposed to malnutrition, which often leads to death or robs them of early life-saving surgical intervention.

“Our minimum age as per Smile Train surgery is three months for cleft lip and one year for cleft palate. So nutrition is important in order not to delay or sideline the surgery for the child because we could lose some of these children to malnutrition. And it has been reported that most of them were losing these children because no one knew how to feed them.”

Smile Train’s efforts

While some Nigerian children with clefts and palates suffer this fate and some even die, the tide is changing as Smile Train is changing the narrative by not just offering free corrective surgeries but spreading awareness on the condition and empowering local doctors, nurses, nutritionists, and dieticians, anaesthetists, biomedical engineers and technicians, speech therapists, and social workers with skills on how to keep these children alive and well even before their surgeries.  Daniel and Aminat are beneficiaries of this noble gesture, which began in 2007 in Nigeria.  

Smile Train currently in 36 states of the Federation, including the Federal Capital Territory, FCT, Abuja, the Senior Programme Manager for Smile Train West Africa, Victoria Awazie said Smile Train is complementing possible free surgeries at the earliest possible time and reducing the burden of feeding on parents and caregivers.

Awazie said the organisation conducts training on comprehensive cleft care through good nutrition, feeding, and empowerment of healthcare providers to be able to incorporate nutrition in their departments.

She explained that the nutrition training programme for nutritionists working in their partner hospitals was to ensure that these nutritionists offer treatment to cleft patients who are malnourished as well as stop children born with cleft lip and cleft palate from dying of malnutrition.

Awazie said that when children don’t get the required nutrients because their mothers don’t have appropriate feeding knowledge, a lot of them will not gain the weight needed for the surgery. “So the child needs to be built up nutritionally to be able to have an adequate weight for the surgery.”

Statistics from the organisation as obtained by Vanguard showed that over 37,000 safe and high-quality surgeries have been conducted in Nigeria.

She explained that to ensure smooth operations of the Smile Train surgeons, the organisation installed state-of-the-art KidsOR, operating rooms, at 3 partner hospitals in Kano- the Armed Forces Reference Hospital, Enugu National Orthopaedic Hospital, and Lagos -Lagos University Teaching Hospital with the one in Enugu Solar powered.

Awazie who noted that cleft lip and palate surgery at any of Smile Train’s treatment centres is 100 per cent free explained that the organisation has also sponsored the first cleft e-registry in partnership with the Federal Ministry of Health, Nigeria, through the National Surgical, Obstetrics, Anaesthesia, and Nursing Plan (NSOANP).

Ways to feed children with cleft and palate

Nabie explained that there are different ways to feed these children since they cannot latch on to the breast properly.

She said mothers can try different breastfeeding positions and can use their thumb or breast to help fill in the opening left by the cleft in the lip to form a seal around the breast.

While breastfeeding or bottle-feeding a baby with a cleft lip or palate, the baby should be held in a semi-upright seated position to limit the amount of liquid that enters the nasal passage.

She said mothers can express milk in the appropriate steps and give the child the milk using special cups for children with cleft lip called nifty cups or use specialised bottles, which may not be easily accessible here in Nigeria and are quite expensive.

Also, babies with a cleft palate carry a risk of milk coming out of the nasal cavity because of the gap in the palate. Hospitals may fit the baby with a mouthpiece called an obturator that fits into the cleft to prevent backflow of the milk and help the baby swallow the milk.

Studies have also shown that breast pumping in mothers of babies with cleft lip and/or palate should begin at birth.