Many women will tell you that becoming a mother for the first time is amazing but also a little scary.
There are various worries parents go through, but first and foremost is usually concern over their child's health.
This time is doubly hard for parents whose children are born a little different. They may face judgment and a lack of understanding from others.
We speak to a Johannesburg mom who wants to share her story to help others become more informed.
Qaqambile Phika's son, Sibaluhle, was born with a cleft lip and palate and the 27-year-old mom tells Drum his story is the awareness that children like him deserve.
She, like so many mothers, knew very little about his condition and was scared by it.
“When I gave birth in 2017, I was as happy as any mother could be for their first child. This joy was also accompanied by fear when I found out that my child had a cleft lip and cleft palate deformity”, she says.
“I was scared and didn’t know if I would be able to give him the care he needed, but I decided to then turn to the internet in order to inform myself about it”.
Qaqambile was also helped by the NPO Smile Foundation that assists children with facial abnormalities. They also helped her understand her baby’s condition.
Around one in every 1 000 babies in Africa is born with a cleft lip or palette and one in 10 of those children will die before their first birthday, according to Cipla Foundation Miles for Smiles.
Sibaluhle has defied these odds but at just three years old, he has undergone four surgeries and will have more in the future.
A cleft lip or palate can cause problems beyond cosmetic issues.
"The only other issue we've had was with his speech, but as he's grown up and with consistent speech therapy sessions, it has improved significantly.
“I love being Siba’s mother, although it was a bit challenging at first,” Qaqambile admits.
She had to stop working to become a full-time stay-at-home mother in order to give him the care and attention he needed.
"I had to choose between having a job and being there for my son's speech therapy sessions and all the checkups with doctors", she says.
“It was nerve-wrecking, but he’s grown up to be such a lovely boy. Things would be easier without still having to deal with the stigma and teasing we have to endure. I have been accused of being a bad mother and that our family is bewitched. It is all so tiring."
She hopes telling Siba’s story will help inform and normalise the stigma many people have around children born with deformities.
“Siba is such an active and happy little boy. He lights up the room with his energy and is very inquisitive about everything. There was a time when he came up to me and asked about why his nose looked different from other children,” Qaqambile says.
“We need to normalise children with deformities and allow them a platform to be seen. It's something so common yet the lack of information or awareness about it makes it harder for people to be informed and not make hurtful statements to those children or their mothers.
"They need to be given a chance to live their lives like other kids and to be able to see themselves represented in other kids on the television shows they watch or the toys the play with.
“There’s so many dangerous beliefs that even adults have regarding children like Siba and I want us to all work towards being more informed”, she says.
The Smile Foundation is a South African NPO that assists children with any type of facial abnormality to receive corrective plastic and reconstructive surgery within South Africa. They help children who suffer from treatable facial deformities such as cleft lip and palate, burn victims, Moebius syndrome (facial paralysis) and other conditions.
For more information, or to donate, click here.
According to the Centers for Disease Control and Prevention, a cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. Together, these birth defects are commonly called “orofacial clefts”.
The Smile Foundation says that cleft palate causes are a complex result of environmental and genetic factors during pregnancy. It is an affliction that can affect both sexes and all ethnic groups, and surgery is the only way to repair these malformations.
To read more on cleft lip and cleft palates, click here.
- A cleft lip, which is either complete or incomplete and either unilateral or bilateral, which means it affects one side of the lip or both sides simultaneously. Surgery can be performed between three and six months after birth and involves stitching the skin of the lip together.
- A cleft palate is when the palate cleft affects parts of the soft palate and extends into the hard palate and the gum. The corrective surgical procedure can be performed between four and 12 months after birth and involves repairing the area in layers.
- A lip cleft and palate cleft is a unilateral or bilateral cleft that runs from the base of the nose through the gums and palate. It is possible for this to occur while the nose and gum remain joined. Surgery for this involves a combination of the above two procedures.