Cleft Friends provides support to parents
When Jacky Engela’s son was born, she was nervous to introduce him to her friends and family because he looked a little different to the other babies.
Unsure how those close to her would react to seeing his cleft lip and palate for the first time, she felt alone and scared.
That was until she met Helena Cullis, project manager at Cleft Friends — a project of the Smile Foundation — and quickly realised that she was not alone. A cleft lip or palate is a fairly common facial deformity in babies that develops during pregnancy.
“The day Winston was born, I felt alone and scared.
“Then I met Helena and they helped me through many traumatic situations,” Engela, of Sydenham, said.
Three years ago she gave birth to her son, Winston, at Dora Nginza Hospital.
“I found out my son had a cleft lip and palate only when he was born.
“When they told me I was scared, I did not know anything about cleft lips or palates. “I felt alone, so helpless. “My first thought was ‘how did this happen? ’”
At first, Engela blamed herself.
“Did I do something wrong during my pregnancy?
“Going out in public with Winston was stressful as people would stare or come straight up to me asking questions about my son’s condition. “It was never easy. “Even though he is three years old now, we still get people who stare at him when we are in public,” Engela said.
But Cleft Friends provided her with the knowledge to be able to answer all the prying questions with confidence.
The numerous doctors’ visits and operations little Winston had to undergo were a lot for the new mother to bear.
“It breaks my heart and I sometimes get angry at people when they stare at him or make nasty comments about the scar on his lip,” Engela said.
“When he was born, I wanted to hide him from the world, but it was not always possible.”
She had often felt depressed because of this.
Cullis said Cleft Friends was the Smile Foundation’s support group for parents and children in similar situations to Engela and Winston.
Similarly for Cullis, she had experienced immense anxiety and stress when her son, Joel, was born with a cleft lip.
Joel underwent corrective surgery at six months old.
Their journey had inspired the birth of Cleft Friends.
“We could not find a South African parent support group for cleft lips and palates so we decided to start one along with another friend, Madge Blignaut, who was also born with a cleft lip and palate,” Cullis said.
“Our mission statement says that we seek to improve lives by empowering, advocating and educating all South Africans affected by this.
“The issues raised in our support group are different as each cleft diagnosis is different.”
She said this included dealing with birth announcements, surgery, feeding issues, speech therapy and dental concerns.
Cullis said they also discussed post-operation care, pre-surgery anxiety, what to pack for a hospital stay and how to cope with pain management for babies.
Cleft Friends can be contacted on 082-393-1206 or e-mail helena@smilefoundationsa.org.