Silver Lining for Children with Cleft Lips
For the trio of Mary Ogar, Sola Adepoju and Adejoke Ohori, concealing their babies who were born with cleft lips for about four months after birth was the toughest decision to make. Rising from their despair, Rebecca Ejifoma writes that a silver lining came from free surgeries by Smile Train in collaboration with Lagos University Teaching Hospital, thus giving their children and many others a new lease of life
Mary Ogar: Despair Turned to Joy
“I cried so much when I saw my three-month-old baby’s face; he looked so fine and better after the operation.” Those were the words of 34-year-old Mrs Mary Ogar, who could not contain her joy at the sight of her baby.
Indeed, Wednesday, August 10, 2022 will always be a day to remember for Ogar and her husband. It was the day her despair turned to joy.
Twenty days after, Ogar gleefully cradled her three-month and 21-day-old son, Isaac in her left arm while on an iron single-seater waiting chair in the doorway of the Oral and Maxillofacial Department on the S.O.P. Building at the Lagos University Teaching Hospital (LUTH).
Neatly dressed in a white blouse and an Ankara cloth tied around her waist, she recounted, “Since I gave birth to my baby, I had never take him outside or let people see him. I was afraid. But now, my husband and I are taking our baby to church for Thanksgiving on Sunday,” she giggled as she fought back tears.
Ogar – a tall, slim and fair-tone woman with a monosyllabic mannerism – had expected the joy of every mother after delivery. But it was a far cry from it. When she saw the facial expressions of the doctors in the delivery room, their silence printed fear in her mind and her heart began to race.
When her baby was placed peacefully in her arms, she wept. “I cried very well,” the first-time mother conceded. “It hurt my chest so much. That day I delivered, I felt somehow because I have never seen this kind of thing before. How did I give birth to a baby looking like this?”, she recalled she thought aloud, as the gynaecologists at the private maternal clinic at Iyana-Ipaja tried to placate her.
Among the riots of thoughts that filled her mind were “What did I do to have a baby like this? Of all the women that gave birth in that hospital that same day, it was only me that had this kind of baby”.
But there came a beam of comfort. “The doctor who delivered my baby said I shouldn’t worry or cry that they treat it. He said the name os cleft lips. He then told us to go to Ikeja General Hospital. I was coming every day. They wrote the food that my baby would take. They told me I should feed him very well.
“Even to buy the NAN, the money was too much as it cost N3,500 to buy one tin and my baby eats all the time. The NAN I’ve bought is up to 40 because he couldn’t breastfeed well.”
So, when Ogar visited LUTH following a referral from the general hospital, she let it all out. “I was crying when I entered this place. People were telling me to calm down. They told me to feed my baby very well. And they will repair the baby for me and I won’t recognise him anymore. They encouraged me to look at other mothers who brought their babies with cleft lips, that mine isn’t that much. All the advice made my heart just relax.”
“But again I was worried because I was thinking who will give me the money for the operation. I didn’t believe that these people (Smile Train) will take care of everything. I come to the hospital every day. Instead of me paying, they are giving me money.”
Astonishingly, she asked, “Can you imagine? They give me money for transport too.”
And finally, that Wednesday, her life-changing moment became real. “When the doctor carried my baby to the theatre for the cleft surgery, I was crying. But my baby was brought to me looking fine. Ah!” she exclaimed, “The cut is not there on his mouth again. I’m so grateful.”
Sola Adepoju: Hope Looms
For 35-year-old Mrs Sola Adepoju, a first-time mum like Ogar, her daughter is only three months and a week old. “Till now I have not exposed her to the public. And I didn’t do the naming ceremony either,” she said straight-faced while awaiting her turn at the Oral and Maxillofacial Department at LUTH, where other mothers filed on the waiting chair to treat their babies with cleft lips and palate.
Adepoju had her baby clinging to her back. Her baby girl had a narrow painter’s tape around her mouth ahead of her surgery. Despite being told of the corrective surgery, the make-up artiste was a bit of a doubting Thomas. Hence, she contemplated suicide or homicide. “I decided to commit suicide at first. Later, another bad thought came to my mind that once I got home after discharge, I would give her something to send her back to where she came from; I wanted to kill her,” she revealed, as she buried her head in the ground.
“I don’t even know how to say how I felt that day. It was out of this world. I was thinking to myself ‘What is this?’, ‘Where did I get this from?’ ‘Is this my baby or what happened?’, ‘Where will I take this baby?’ ‘How will I forge ahead with this child?’ I asked myself a lot of questions,” she recounted in a quavering voice.”
However, after delivery, Adepoju revealed that the doctors allayed her fears. She got a drift of a solution at no cost. “The doctors told me that cleft lips are very correctable, and I won’t even remember. That gave me hope. Even another doctor told me the same thing. It was then I started accepting the fact that my baby had come to stay; there was nothing I could do.”
During her delivery, Adepoju had no shoulders to cry on. “My husband was not with me then. And I had my child through CS (Cesarean section). But the doctors told him immediately. He didn’t react much, probably because, during our National Youth Service (NYSC) days, he has been dealing with children with special needs. He had his PPA in one such school. So, he was supportive from day one.”
As a mother, Adepoju concealed her baby from any stigma or bullying. “I have not exposed my baby to anyone. So many people don’t know she has a cleft. She is three months and a week old now.”
Like Ogar, who encountered some hiccups breastfeeding her son, Adepoju had hitches, too. “No,” she frowned, “Breastfeeding isn’t working. I stopped breastfeeding her since. I give her baby formula. During the little time I fed her before I stopped, the milk was coming out of her mouth and it wasn’t easy for her to suck. It was a struggle for her. She wasn’t getting enough milk. If I put her to the breast she would cry so much.”
Although the new mum is eager to return to her beauty business, she is waiting for the surgery. “This has affected my work as a make-up artiste. Since I don’t have house help, I can’t leave her at home. That is why I’m hoping we will do this surgery so that I will be able to go about my work.”
Once the orthodontist discharged her daughter, she hinted, the surgery would hold. “The doctor put the masking tape around her mouth because they want the lips to come together before they operate on her. Once the mouth reaches the millimetre they want, then they will discharge us. As for the right weight, which is the second criterion, we have achieved that.”
Inquisitive Adepoju, however, had to ease her conscience. “My husband and I have asked from both our families. No one from this generation we are in now – I don’t know about the ones that are dead – has a cleft. I decided not to think because my husband encouraged me so much.”
Adejoke Ohori: Peace at Last
Mrs Adejoke Ohori is another mother. She has five children. She sat peacefully in the Oral and Maxillofacial Department, fully dressed in Ankara from the top down.
The introverted 42-year-old told THISDAY that her fifth baby, Destiny, is the first child born with a cleft lip in her home. He is only six weeks old. “When I gave birth, I felt a bit okay because the doctor told me my baby can be treated,” she narrated briefly in Pidgin English. And because she is among the What-God-cannot-do-does-not-exist people, Ohori believed the doctors’ counsels. “Yes, there is nothing God cannot do. So, I no worry. That is why I am here.”
So, from the private hospital in the Ayobo area of the state where she had her baby, she was referred to LUTH for free surgery. “My baby will be operated on September 11. I am happy. And my husband is here with us every time,” pointing at her husband, Mr Bowen Ohori, sitting a hair’s breadth opposite her. “Smile Train people paid for everything.”
Today, Ogar, Adepoju and Ohori have every reason to smile. Hence, they promised to encourage parents whose children have cleft lips and palate to visit LUTH or other facilities.
Arguably, the children of Ogar, Adepoju, and Ohori are among the 540 babies born with cleft lips daily in Nigeria and the 6,186 children born with cleft lips and or palate annually.
According to a Consultant Oral and Maxillofacial and Cleft Surgeon with the Lagos University Teaching Hospital (LUTH), Prof. Mobalanle Ogunlewe, a cleft is a gap or split in the upper lip and/or roof of the mouth (palate) present from birth.
She also told THISDAY that cleft lips and palate can be generic, which means inherited from either the father or the mother. “Very many missing or altered genes have been identified and a high risk with parents who have a family history of cleft,” says Ogunlewe.
What to Avoid During Pregnancy
According to Ogunlewe, popularly called Mama Cleft, pregnant women should avoid alcohol, certain drugs like steroids, herbal concoctions, and thalidomide.
Having been providing comprehensive cleft care using a multidisciplinary team approach for 13 years, she cautioned women to be careful of what they consume when pregnant, especially herbal concoctions. “We haven’t subjected those herbal substances to medical evaluations.”
Intake of Folic Acid During Pregnancy
With research showing that consuming folic acid prevents defects in babies during pregnancy, Ogunlewe cautioned, “Folic acid deficiency during the first trimester of pregnancy increases the risk of developing clefts.”
Meanwhile, foods rich in folic acid include bread, pasta, cereals, liver, beans, leafy green vegetables, oranges, fresh fruits, whole grains, and seafood among others.
Effects of Unrepaired Cleft Lip and Palate
On the effect of unrepaired cleft lips and palate, Ogunlewe insisted that it attracts social stigmatisation and bullying, difficulty in social interaction, patients face psychosocial issues and often experience low self-esteem.
Hence, she encouraged parents and guardians to save their children from such traumas. The prof listed the procedures for total recovery including feeding and nutrition, surgery, dental care, speech therapy, ENT care, speech services, orthodontics, and counselling and support. “This is all at no cost. Thanks to Smile Train. And that is why we are inviting parents and guardians to bring their wards and children with cleft lips and palate for free surgery,” says Ogunlewe.
Causes of Malnutrition in Children with Cleft Lips, Palate
The cleft surgeon noted that the recommended weight for children three to four months old is 4.5 kilograms. The children with a cleft are fed to achieve this size before the surgery. Ogunlewe highlighted that children with cleft lips or palate experience more difficulties with feeding than those without cleft lips.
“They are unable to suck because of the split palate. The risk of aspirating food is high. Poor feeding can lead to failure to thrive and impaired survival in countries like ours where health resources are suboptimal,” says the expert.
She, however, pointed out that the mental state of nursing mothers whose children have cleft lips and palate must be in a good state to be able to breastfeed.
Taking a cue from the surgeon, Clinical Nutritionist/Dietitian, Mrs Tijani Bolanle, told THISDAY that when a baby born with a cleft lip cannot latch well onto the breast and feed properly it causes malnutrition.
“When the child is not patiently fed by the caregiver, and when the caregiver did not feed the child the appropriate food for his/her milestone development, then that child will be malnourished,” says the registered dietician nutritionist (RDN).
Research, however, shows that many of these babies born with cleft lips and/ or palate are exposed to malnutrition which often leads to death or robs them of early life-saving surgical intervention.
Accordingly, Smile Train, a cleft-focused organisation has promised to continue to equip, fund and provide resources to empower local medical professionals in over 70 countries. These professionals are to give 100 per cent free comprehensive cleft surgeries and other forms of essential cleft care in their communities. Hence, it has partnered with 1,100 hospitals across Nigeria and globally to provide this free care.
This is because the organisation estimated that, every three minutes, a baby is born with a cleft lip and or palate, adding that many of these children around the world are living with untreated clefts. And, according to the World Health Organisation (WHO), there are over 6,280 patients with clefts in Nigeria. And 28.6 per cent of children with cleft lips were found to be underweight at the time of primary cleft surgery. Says Nutrition Consultant at Smile Train, Dr Barbara Delage in a cross-sectional analysis of a database.
Access to Surgeries
Dr Justina Seyi-Olajide, a consultant paediatric surgeon at LUTH, revealed that the LANCET Commission estimated that nine out of 10 people in low-middle-income countries (LMIC) lack access to basic surgical services.
To improve the quality of life of the children, the surgeon cited that 143 million additional procedures are needed yearly to fill unmet needs.
Solution to Cleft Lips
In the words of Ogunlewe, “Cleft lip and palate is not a life-threatening defect. It is not a curse not evil. It can be repaired. The child can live a normal life. Care is accessible and free.”
That is why having found the solution to their children’s cleft lips – surgeries – there is no gain in saying then that the children of Ogar, Adepoju and Ohori among other survivors have become hope to thousands of children born with cleft lips and/ or palate across the nation. And, as mothers, they remain resilient that however the adversary, a mother’s love cannot be conquered.