Born with a cleft palate: A guide to recovery from psychosomatic scars

It is said first impressions are formed in microseconds and for parents to be handed their newborn child with a cleft lip or palate is a shock which never truly goes away.

Fortunately, in modern times, parents are not alone any more, with support groups a vital lifeline for parents and peers of children with cleft lips and palates.

When Jacky Engela gave birth to her baby boy at Dora Nginza Hospital in Gqeberha, formerly Port Elizabeth, she had no idea that he was going to be born with a cleft lip and palate.

“The moment Jacky saw her baby for the first time was frightening. She felt scared and alone,” said Heléna Cullis, one of the founders of Cleft Friends, the only organisation in South Africa that offers support to parents from mothers who speak only from experience.

“Telling her family about her child’s condition was also a very sensitive issue as she did not know how they would respond.

“Taking a taxi and going anywhere in public was another key worry for her because she was worried that people would stare and make nasty comments.”

Cullis formed Cleft Friends after giving birth to her son, Joel, who was diagnosed with a cleft palate six months after he was born in 2009.

“I had to grieve about the vision I had of my first child and embrace the reality that involved my newborn needing plastic surgery when he was six months old and having to feed him with a special needs bottle,” Cullis said.

Living in Gqeberha at the time, Cullis and her husband only found out about their sons’ cleft palate when he battled to latch for breast feeding.

“It was a big shock. My first reaction was the doctor had made a mistake and he was supposed to be speaking to the person in the bed next to me,” said Cullis, speaking about her son’s diagnosis.

“It was flat out denial and only later was I really informed about the grieving process. “If I look back at what I went through it was textbook, it was denial, self-blame, the whole bang shoot.

“I did it properly and thoroughly,” Cullis said with a laugh. She can laugh now in self-deprecation but at the time, not so much.

“I wish had someone around to explain what I wasgoing through while wondering what I did wrong,” said Cullis. And once she spoke to a friend Madge Blignaut – co-founder of Cleft Friends, who had also been born with a cleft lip – she began to realise there was little support for parents.

Cullis had noticed Blignaut’s scar but had always thought it was because of a car accident and once they began talking, they saw the need to close the information and support gap.

Each case is as unique as the child born with the condition, as some may have both a cleft palate and lip, while others may have one or the other.

A 2019 study by Wits University professors Phumzile Hlongwa, Tendai Dandajena and Laetitia Rispell – Comparative analysis of healthcare provision to individuals with cleft lip and/or palate at specialised academic centres in South Africa – found: “Cleft lip and/or palate (CLP) is the most common congenital anomaly of the craniofacial complex, with an estimated worldwide prevalence of 1/500- 700 live births.

“In South Africa, it’s among the five most common birth defects reported – with an estimated prevalence of 0.1-0.4/1 000 live births.”

They also found children with CLP require “coordinated and specialised treatment offered by a multidisciplinary team, which includes geneticists, maxillofacial surgeons, otolaryngologists, orthodontists, paediatricians, plastic surgeons, paediatric dentists, psychologists, professional nurses, social workers and speech and language therapists”.

“The study findings underscore the need for the department of health to review and update the national policy on congenital anomalies, which has not been revised since 2005,” the study stated.

Parents caring for children born with a cleft lip or palate, or who have been the victim of severe burns, are finding much-needed support, guidance and a sense of community from parent and peer support groups like Cleft Friends and U Matter, a support network initiated by the Smile Foundation to guide their recovery from the brutal post-traumatic physical, psychological and emotional scars inflicted by traumatic burns.

Smile Foundation chief executive Hedley Lewis said providing a safe platform where mothers, caregivers and guardians can share their stories, seek advice, and voice their concerns has proven incredibly powerful in reducing anxiety and dealing with trauma.

Parents or guardians going through a similar journey are invited to join Cleft Friends or U Matter. Contact programme manager Helena Cullis on 082-393-1206 or e-mail helena@ smilefoundationsa.org.

amandaw@citizen.co.za

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