When a baby is born with a birth defect like a cleft palate, the mother can often feel alone which is why a support group has been set up in SA.
South Africa (22 February 2021) – When Jacky gave birth to her baby boy at Dora Ngiza Hospital in 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. 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,” comments Heléna Cullis, one of the founders of Cleft Friends, the only organisation in South Africa offers support to parents from mothers who speak only from experience.
Helena formed Cleft Friends after giving birth to her son Joel, who was also diagnosed with a cleft palate at birth. She had no idea what a cleft palate was and felt alone and clueless.
“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 6 months old and having to feed him with a special needs bottle.”
Cullis says Cleft Friends was able to help guide and teach her how to cope with these situations.
“On arrival, I found a quiet space where I was able to talk to her and find out how Cleft Friends could support her. The gift pack I gave her with the Cleft Lip and Palate Parent Guide made her feel empowered to be able to ask her team of doctors’ questions that would lessen her anxiety and worries for her baby and her baby’s future,”
Tebogo Tsotetsi, the lead support mom for U matter, a support network formed in partnership between Smile Foundation and Avela Foundation, echoes Helena’s sentiments, saying parents and guardians of child burn survivors feel far more comfortable approaching her and opening up to her knowing that she has endured something similar.
“We have a mom who tragically lost her son last year. She was absolutely devastated but at least could feel confident connecting with me because she had heard my story. Providing a safe place for mothers with similar circumstances to connect, has proven invaluable in not only providing them with the tools to deal with their child, but with the tools on how they can navigate this crisis in their lives.”
Almost 6 years ago, Tebogo’s life changed forever. After returning home from a church concert on an extremely cold winter’s night, she and her husband turned on a heater in her children’s bedroom to warm it up before going to bed.
From a Garage Studio to Hollywood—SA Music Producer's Journey InspiresFive minutes later, when they returned to switch off the heater, the room was in flames. Her youngest son Kutlwano passed away from smoke inhalation and her eldest, Molemo has endured so many surgeries she has lost count (she thinks over 14 surgeries).
Parents who are 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 for children and their families to guide their recovery from the brutal post-traumatic physical, psychological and emotional scars inflicted by traumatic burns. Both are initiatives of Smile Foundation.
A safe place for meaningful connections
Hedley Lewis, CEO of Smile Foundation, says, 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.
“When a child’s challenges first emerge, parents often find themselves feeling not only confused but alone. Often blaming themselves, many of these moms often suffer in silence and develop mental health issues as a result because they do not get the support they need. In addition, they may not know anyone who has experienced the same kinds of problems, and it may feel too painful to share the details of what they’re going through with friends and family. Cleft Friends and U matter aim to bridge this gap by providing mothers with a safe place to form meaningful connections, find support, vent, seek advice, and access resources.”
He adds the uncertainty and isolation surrounding the COVID-19 pandemic has further compounded this stress and anxiety, making organisations like Cleft Friends and U Matter even more important and relevant.
“The stress for parents and caregivers having to navigate the Coronavirus pandemic and undergo their children’s surgeries during lockdown has been epic. The U matter and Cleft Friends WhatsApp and Facebook groups have been a massive source of strength and hope to parents and guardians during these difficult times. From women giving birth alone without their husbands, to surgeries being repeatedly delayed, they have had to deal with a string of new and very real problems.”
Lewis says by finding other parents and guardians who are facing, or have faced, the same or similar issues, they feel better equipped to navigate a path they never envisioned.
Mothers going through a similar journey are invited to join Cleft Friends or U Matter. Contact Programme Manager, Helena Cullis on 082 393 1206 or email helena@smilefoundationsa.org
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