Born with a cleft in Cambodia – Narith’s Story
Six months ago, in a rural Cambodian health centre, the mother of a newborn baby boy first laid eyes on her son, Narith. She was shocked to discover Narith looking up at her with a cleft lip and palate. The condition can be confusing and upsetting, especially for families not expecting their child to be born with such an abnormality.
Around the world, there are many superstitious beliefs and misconceptions surrounding a cleft lip and palate. In India, some believe a solar eclipse causes a baby to be born with a cleft. Many rural Cambodians believe a cleft to be an act of god, caused by sins of a past life or a curse placed on the family.
Instead of seeking medical treatment, families often seek help from spiritual healers. Healers are believed to offer a range of cures for a cleft, from simply praying and giving more to charity, to more extreme cases of sacrificial and purification ceremonies. Fortunately for Narith, his family sought licensed medical care.
The medical staff at the health centre, where Narith was born, explained to Narith’s mother his condition, what changes it would bring to their lives, and treatment options for her newborn son. Although a cleft can be repaired, it is essential that treatment begins shortly after birth and is consistent throughout a child’s young life. For Narith and his family, treatment was only available in a handful of centres that were hundreds of kilometres away in Phnom Penh or at AHC in Siem Reap.
A week after his birth, Narith and his family arrived at AHC to seek care, where he has been receiving treatment with the team at AHC ever since. Narith is among dozens of other children who receive cleft treatment at AHC every month.
A cleft lip-palate is when the lip and/or the roof of a child’s mouth has not formed properly during pregnancy. It is one of the most common birth defects in the world, affecting one in every 700 children born globally. But in Cambodia, there are few options for children to receive the full range of specialised treatment they need to have their cleft fully repaired, especially for families like Narith’s who live in rural areas.
Narith’s family live close to the Thai border in a small rural community. Their circumstances are similar to many families who visit AHC every day, over 50% of AHCs patients come from outside of Siem Reap, often from poor, rural communities where education and access to healthcare is low.
Narith and his family make the three-hour long journey to AHC each month to receive treatment from the ‘Cleft Squad’. The ‘Cleft Squad’ is a multidisciplinary team of specialists who work together to provide holistic treatment to Cambodia’s cleft patients at AHC. Narith receives treatment from over five different specialist units around the hospital, including the orthodontic, dental, nutrition, surgical, physio and social work teams.
“Early treatment of cleft is crucial for a child to recover fully. If a child has access to the necessary care from birth then the hard and soft tissues around their mouth can begin to be moulded, and they can feed properly to gain weight, in time for life-changing surgery.”Dr Chern Chern, AHC Orthodontist Volunteer
The orthodontic and dental team use Nasoalveolar Moulding (NAM) plate to reshape the gums, lip and nostrils of a cleft patient. Using a plastic plate inserted into a child’s mouth and a stent into the nostril, it is a nonsurgical intervention that reduces a cleft in the months before surgery, decreasing the number of major surgeries a child needs to repair their cleft. The NAM plate also acts as the roof of a child’s mouth, crucially allowing them to create suction when feeding.
The breastfeeding counselling provided by the nutrition team teaches Narith’s mother feeding techniques, including using a breast pump, so he can feed properly despite his difficulties. The team monitors his weight closely to ensure he is receiving the important nutrients needed for a healthy baby, and is gaining enough weight and strength to undergo the life-changing surgeries he will need to repair his cleft.
Narith will require many surgeries over his life to repair his cleft lip and palate. AHC’s surgery team will initially repair Narith’s cleft lip. Then over the coming years, they will slowly repair the soft tissue of his cleft palate and later graft the gap in his jaw by moving bone from his hip. The NAM treatment Narith has received since birth from AHC’s specialist team is critical for effective surgeries and a full recovery of his cleft.
Children born with a cleft encounter many physical, cultural and social challenges in their life. Religious beliefs, discrimination and stigmatization can lead to poor psychological and physical growth of the child, and can cause increased chances of child abandonment and infanticide.
“Repairing a cleft is a huge part of the process. But what is just as important is educating the families and their communities to dispel any misconceptions about clefts, and inform them of the proper treatment available.”Dr Chern Chern, AHC Orthodontist Volunteer
Repairing a cleft not only allows a cleft child to live a less complicated life in society, it also allows them to smile, feed and speak properly. Narith still has a long road to recover ahead to repair his cleft lip-palate. But with help from AHC’s ‘Cleft Squad’, he has every chance of growing into a normal, healthy young boy.
The need for specialised paediatric care becomes increasingly important as health systems throughout the world struggle with the COVID-19 pandemic. Narith’s story is the same as many vulnerable Cambodian children who are in danger of being forgotten.
Our continued mission is to ensure that essential health care for children in Cambodia remains available during this global pandemic – leaving no child unwell.