Cleft-Lip Babies: A Mother's Agonizing Tale and Solution

By AdvocateNews on 02/11/2021

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Eze's newly born before the Smile Trains cleft surgery
Eze's newly born before the Smile Trains cleft surgery

By Andrea Onuoha

The burden that comes with having a baby born with cleft lip or cleft palate is a familiar one, both for parents and the growing child. ANDREA ONUOHA writes on how a mother overcame taunts and stigma through her resilience, and helped her daughter regain her smile courtesy of a medical outreach.

Medical statistics put the chance of having a child with a cleft  lip or palate at one in every one thousand live births. In some other data, the probability is even much higher: one in six hundred births.

Cleft is a birth defect characterized by a split either on the lip or a hole in the palate. These defects occur when a baby's lip or mouth does not form properly during pregnancy, and may result in feeding, speech and hearing problems. Although medical scientists cite genetic and environmental factors, there has yet not been any certainty with regard to the cause. But what is not in doubt is the anguish that having a child with cleft lip causes parents, and the life of discrimination and low self-esteem that children who live with this impairment have to endure.

This discrimination is not helped by the spiritual undertone often attached to the condition in some societies, to such extent that many consider the solution to the condition to be spiritual than medical. It is no less so in Nigeria's south-east. No one understands this burden better than Louisa Ukamaka Eze, a woman whose child was born with cleft.

A Painful Journey

Mrs Ukamaka Eze and Daughter , Photo by Andrea Onuoha

Mrs Eze, an Igbo from southeast Nigeria, gave birth to her first child on 3rd of July 2015 in a general hospital in Benin Republic. She gave birth via Caeserian section, and after delivery the child was taken away by doctors. When Eze regained her strength after the CS procedure, she asked after her baby but was told by the husband that the baby had been taken to a special unit.

Curious, she went in search of her baby. After wandering through the paediatric wards and offices she finally found her baby where she was being used, literally as a specimen for student doctors and nurses. Shocked and in tears, she rushed to grab her baby.

"For days I had not seen my baby," she said. "I was troubled and I was sure I gave birth to a live baby, even though I noticed a strange defect around her mouth. So I was anxious to see her. She was my first child. I really struggled with health workers in the hospital untill they took me to the paediatric ward where they kept my baby. On reaching there, there were these student nurses and doctors explaining things on my baby."

Moment of Truth

Eze was asked to stay out while her husband was called aside by doctors, who explained to him what the deformity was, and the implications of having a child with the condition.

According to her, the doctors suggested they ended the baby's life to prevent further suffering, as the defect would prevent her from suckling and, ultimately, result in her death by malnutrition. 

Eze's husband rebuffed the doctor's suggestion, and agreed with his wife to take the baby home and nurse her the best way they can. The couple eventually left the hospital three days later with their baby to a facility, also in Benin Republic, where one of the doctors had told them that the surgery could be performed. But they could not find the solution hoped for, and, so, took their baby home in disappointment.

A Feeding Problem

Although Eze's baby weighed 4.3kg at birth, she continued losing weight given that she could not properly suckle. The baby was restless and cried often, a development that left the mother utterly frustrated. "She was getting thin and crying day and night because she could not feed properly. I was helpless, and there was nobody I could talk to about what to do. Within me I was weeping bitterly, and wondered if this was how I will lose my first child," she said.

LIGHT  AT  THE  END OF  TUNNEL

But amid her despair, there was a whiff of respite when Eze's elder sister visited from Nigeria for "omugwo", the traditional practice among the Igbo where the mother of a bride or an older female relation visits to help with babysitting duties and sundry household chores. She had not told her elder sister about the baby's condition, so she was understandably shocked when she saw the baby. 

Nonetheless, she later figured out how the baby could be fed for the mean time. "She suggested we fed the baby through a syringe until we can find a permanent solution to the cleft deformity." This ingenious suggestion, according to Eze, helped the baby regain weight in two weeks.

Eze's elder sister later left Benin Republic to Nigeria with a determination to find a lasting solution to this defect. Fortunately, one day she met a woman with a baby that had an ailment similar to her sister's baby's. The woman explained that she was heading to Orthopedic Hospital Enugu where she heard a free corrective surgery for babies with cleft was being held. She passed on this information to her younger sister, who left all she was doing in Benin and came down to Nigeria in February 2016.

SEEKING RESPITE IN NIGERIA

"At the time my sister called me, my baby was seven months," she said.

Once back in Nigeria, Eze and her baby made their way to the National Orthopedic Hospital Enugu, where she met with doctors who classified her daughter's case as "Smile Train Project", which meant she would not have to pay for the surgery. "They did not even allow me pay for the hospital card," she recalled. 

She was still thinking it was too good to be true. But her daughter was booked for her first surgery. "They took us to theatre for the first surgery without collecting anything from us. It felt like a dream. As I came out of the ward to the compound I saw the Smile Train poster. I went on my knees to thank God," she said.

SMILE TRAIN

Smile train photo by Andrea Onuoha

Smile Train is the largest cleft-focused organization with a model of true sustainability. The organization provides training, funding, and resources to empower local medical professionals in over 70 countries to provide 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 organisation achieves its medical aim through local orthopaedic surgeons where they offer FREE cleft surgeries to communities. Fortunately, Smile Train covers the five southeast states .The organization bears the cost of the surgery to ensure that cleft patients do not have excuse whatsoever with the aim to change their beliefs about cleft deformity.

Another thing that makes this organisation different is after the initial surgery, there is a secondary surgery, followed by speech therapy to train patients on how to speak properly. An orthodontic treatment, which is the rearrangement of the teeth, and orthognathic surgery to correct the bone nonalignment of the upper and lower jaws, are also required.

TEARS OF JOY

Tears of joy welled up in Mrs Eze's eyes as she recalled her journey to a healthy child.

She was asked by the doctors to return after one year for her baby's palate surgery which she did. After a successful palate surgery, they were asked to return when the baby turned seven. She is glad to see the remarkable transformation her daughter has undergone; how she has grown into an intelligent little girl of seven who loves to read.

"February 2016 will remain an unforgettable month in my life. Each time I remember that day, I shed tears for the wonders that God did in my daughter's life. There is no way my husband and I could have been able to pay for all the surgeries that has brought back the smile to our daughter's face," she said. 

The joy she radiates now is a huge contrast to when she endured the stigma of having a baby with cleft. ''I could not bring out my child to mingle with every other children because of that. I love to go to church, but when I go to church it's only my family that will sit on a long bench in a church due to stigmatization. Nobody would touch my baby. I neither told my mother nor any of my distant relations that I had a baby with cleft defect knowing what their reaction will be," she recalled.

A SENSE OF GRATITUDE 

Now a mother of three, Mrs Eze commended Smile Train and the doctors they used to achieve this miraculous feat. She recalled how each doctor gave her hope and treated her kindly, particularly Dr Ifeanyichukwu Onah, the plastic surgeon who performed the palate surgery. 

"I thank God for Smile Train. I just pray that God will add many more years to Dr Onah"s life. Spiritually, physically, emotionally, Dr. Onah has helped me even before the last surgery. I know how we prayed together for a successful surgery and to God be the glory today that one has healed. She will start eating solid food after today. For three weeks now she has been feeding on (corn) pap after the surgery. I thank God for the doctors who advises what should be taken to sustain her after these surgeries''.

 

Smiling Eze's six year old Daughter beneficiary of cleft surgery.Photo by Andrea

Mrs Eze's joy was shared by Mr. Joseph, a beneficiary of the free cleft surgery from Smile Train. Joseph was born with cleft in Akwa Ibom State, a state in Nigeria's Niger delta, in 1987. He had his first surgery when he was in primary school. However, he heard from a friend about free cleft surgery at the Orthopedic Hospital when he relocated to Enugu in 2007, and subsequently had his palate surgery.

Joseph also experienced the stigma of neglect that dates back to his secondary school days. "It was challenging. I felt isolated when I was in high school. I remained silent even when  I knew answers to the teacher's question due to shame that my classmates would laugh at me when I spoke," he recalled.

 

Joseph, a beneficiary of  Smile Train cleft surgery. Photo by Andrea Onuoha.

Joseph, a theology graduate, also commended Smile Train and Dr Onah for restoring his confidence. "Smile Train is sent by God. The organization is really doing a great work here and I'm grateful. I call Dr Onah my medical doctor because I have known him for over six years. He has been a very good doctor to me. He even made an effort to get me employed," he said, adding that he can now pursue his master's degree with confidence.

SHEDDING LIGHT ON CLEFT

Dr. Onah dismissed supernatural notions regarding the causes of cleft in children. "Cleft is simply a failure to meet an appointment in the womb. When  a baby's face is forming in the womb, certain structures are meant to meet together to form the beautiful faces we have. But for some reason, which we haven't been able to unravel, some of those appointments do not quite meet, and depending on the failure of meeting we have various types of cleft deformities. So what we do is to bring those elements that were meant to meet in the womb that did not meet outside the womb to meet. Once that is done, you see the child has a complete, beautiful face," he said.

 Plastic Surgeon Ifeanyichukwu Onah . Photo by Andrea Onuoha

He regrets, however, that despite several awareness programmes in the villages, many people are still unaware of the free cleft surgery. Occasionally, Dr Onah comes across people in their teenage years still living with cleft. "If they are in teenage years and Smile Train has been with us since 2006, where have they been? So a lot of people do not know," he lamented, and urged the public to help publicize the works of Smile Train.

On how he feels after each surgery, Dr Onah says he is elated seeing an isolated children regain their bond with their parents. "One of the things that I enjoy when I do cleft llip repair is to bring the child to the parents and say, 'who does this child look like?' Most time, both parents  would say, 'me'. So, from having difficulty bonding with the child, each parent is claiming a child looks like them. That is quite a transformation."

He added that research has shown that cleft repair removes depression from  62 percent of women who have cleft children. "Once there's cleft repair, joy and bonding return to the parents and child as the child does well," he said.

ENDURING PARTNERSHIP 

The organization's partnership with National Orthopedic started in October 2006. '"We  have had a pan-African experience conference in Ibadan and Smile Train wanted to expand work in Nigeria. Before that time they already had about two or three outlets in Nigeria, and were planning to expand. They looked at our facility, we signed an MoU with them and we have been going on with them.''

The surgeon showered encomiums on Smile Train for sustaining the great work. "Smile Train has been wonderful. They are excellent partners. Their modus operandi is to get the surgeons to be empowered to improve their skills, improve their equipment base and improve safety of the surgeries for the patients and, also, to sponsor so that the patients can get free and comprehensive care. Initially, the sponsorship only covered surgery. But later on, they added nutrition, orthodontist care and speech," he added.

This investigation is supported by the John D. and Catherine T. MacArthur Foundation and the International Centre for Investigative Reporting.

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A Painful Journey
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