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This post is dedicated to all the Cleft Friends support moms – Happy Women’s Day. Thanks for choosing to use your cleft stories to reach out and make a difference in South Africa. Together we have 184 years’ of lived cleft experience and 74 surgeries as moms with a babies affected by cleft lip and palate. We are each on our own “cleft journey” so to speak and are stronger together. As support moms we encourage new moms to keep asking their team of medical professionals’ questions. We make it clear that we are not medical professionals. We know that each cleft lip and palate diagnosis is different and that each bring with them their own challenges, but we also know that most parents experience similar emotions and we can all use a little more support when things feel like they’re falling apart.

Together we manage 14 Whatsapp Groups nationally with over 280 moms affected by cleft lip and palate. The most spoken about topic on these groups since January 2019 includes surgeries, feeding problems, dental issues as well as speech therapy. Our support moms offer one-on-one support, hospital visitations when baby is born and when baby has his/ her operations. It’s important for parents or caregivers to inform us of these dates. We provide access to informative resources with helpful tips from other parents affected by cleft lip and palate on Cleft Moms SA – Facebook Group (closed).

What some people maybe don’t know about Cleft Friends is we support any mom whose baby is affected by cleft lip and/or palate. Sometimes this includes babies born with Pierre Robin Sequence (PRS), Craniosynotosi, Pigmentation linked disorder, Trisomy 13, Twins… the list goes on.

To benefit from all that Cleft Friends offers or to be added to our database so you can find out when the next community event will be taking place in your area simply complete the membership form provided by a Cleft Friends support mom or click on the “join” page on our website: http://www.cleftfriends.co.za/join/.

Feel free to Whatsapp us on 082 393 1206 or email info@cleftfriends.co.za

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage #resilience #womensday #happywomensday #southafrica


Ella before op

“I was also sweating bullets knowing she would want a bottle and it would be hellish but she charmed all the nurses instead and was a happy little chappy! Sometimes we underestimate them and their incredible strength & resilience 😇” Candy – KZN, daughter born with unilateral cleft lip and palate. This was Candy’s comment about her baby not being allowed her bottle before her cleft lip surgery. Isn’t her daughter Ella just adorable?!

Ella 2 years after op

If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage #resilience


This story was sent to us by a strong and courageous mom in Soweto, Qaqambile, whose son was born with a cleft lip and palate.

Sibaluhle at birth

“My son Sibaluhle was born with a million dollar smile! The first time I held my sweet baby I felt a connected to him. He is the most precious diamond. He is a a gift from God and I am beyond grateful for his life. I am not ashamed that he was born with a cleft lip and palate. I showed him off to the world proudly. People would laugh and point at him because of his cleft lip; this broke my heart. I had to be strong every time I was asked what happened to my son. People were not educated about cleft lip and palate and were asking out of curiosity. Sometimes I got tired of their reactions but I made sure everyone knew I was proud of my child.

I see every cleft challenge as a blessing. He is a treasure in our lives. His first operation was when he was 5 months old to repair his cleft lip. His second operation was to close his cleft palate when he was one years old. I’m grateful for my mother (Sibaluhle’s granny) who supported me during this time by holding my baby and comforting him after the surgeries while we managed his pain post op and his mouth healed.

Sibaluhle post op

We attend speech therapy sessions regularly as well as ENT check up’s and we are doing well. Sibaluhle can hear clearly. This is a big relief as sometimes children affected by cleft lip and palate have ear infections and something called glue ear. His smile will always be a million dollar smile to me and melts my heart regularly, oh sweet baby of mine. We smile, cry, celebrate everything together, he has taught me so much in life. Through good times and bad we stick together.

To all the moms out there who have children affected by cleft lip and palate I want to tell you – Keep calm and be cleft strong!”


If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage


This story was sent to by a resilient mom, Teressa, who resides in Knysna, Western Cape.

“The day I found out I was pregnant, I bought a pair of baby socks on my way home from work. I gave it to my husband at dinner time and we were very excited. I had a great pregnancy with no complications. To be honest, I loved being pregnant and couldn’t wait to see my baby. My husband was working in South Africa at the time of birth and since our little muffin decided to see the world five weeks prior to due date, my husband unfortunately wasn’t with me when his first born came into this world. Maybe that was a good thing as our son was born with CLP- a bilateral full cleft palate and cleft lip, BUT he was breathing on his own and we only stayed at ICU for the night. In Sweden, they only do one scan at 18 weeks of pregnancy and they didn’t pick up the cleft lip and palate. Six days later my husband came back from South Africa, the same day Oliver opened his intense blue eyes for the first time. That night Oliver didn’t leave his daddy’s side and nine years later, they still LOVE to cuddle at night.

Oliver when he was born.

Many of my friends asked me about my experience as a mom of a child with special needs. To be honest, I never looked at it that way. Oliver was our first child and we didn’t know what an experience was like with a non-cleft affected child, this was our normal.  I had to express breastmilk as Oliver couldn’t breastfeed due to the fact that his lip was wide open he didn’t have a very strong sucking reflex. We had to use a special bottle to gently squeeze the milk into his mouth while he suckled to the best of his ability.

Oliver enjoying being a kid.

Six month later I found out I was pregnant again. I experienced the same excitement as the first time but with an awareness that things may not go as planned. I believe that a child with cleft lip and palate is NOT a special needs child. Yes, they require more attention to be fed when they are born and will need to have plastic surgery along with speech therapy check-ups. As for the rest of the time they are like ALL other children. They scream when they are not happy, we change their nappies when we have to, they fall and hurt themselves and they make us happy with a silly laughter after keeping us up all night. Our daughter was born with no cleft lip or palate and I had to learn how to cope with my new “normal” as I was a pro at knowing what to do with a cleft affected baby. A non-cleft affected child came with challenges that were new to me. There were many moments during their childhood that I found dealing with a cleft affected child easier than a non-cleft affected child.

Oliver in 2017

To date we have never had an issue with Oliver being different than other children or being teased about his cleft scar or speech. We have always been open about the fact that he was born with a cleft lip and palate and never backed away if anyone has any questions. Oliver is confident and proud to say that he was born with cleft lip and palate. Oliver has a heart of gold.  He is caring and loving and he is definitely the class clown. His smile lights up a room and he has tremendous perseverance even when he struggles with a task he knows how to push through and see it to the end.

I always tell Oliver that, thanks to him, we are able to be part of the Cleft family. We have met families that have become lifelong friends and we have been able be to help and support other families that are in the same situation. To have a child with a cleft lip and palate is a blessing, nothing else! Oliver is like any other child, just a little more special because he is mine.”


If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage


Before and after surgery pics of Hamza
Photo Cred: Nasreen (Hamza’s mom)

This story was sent to us by one of the loveliest moms in our cleft community in Port Elizabeth.

“Life played out differently despite being diagnosed with Systemic lupus erythematosus (SLE) and being told I would never have children of my own. When I was 31 years old I gave birth to our daughter. Six years later I fell pregnant again and our son was diagnosed with a bilateral cleft lip and palate. I was upset and confused. I had no idea what “bilateral cleft lip and palate” meant and regretfully I trusted our good old pal Google; Oh how I wish I hadn’t done that as it made things so much worst. I remember saying I will never love this child. Looking back I regret every word every ugly feeling within me. Hamza was born healthy and perfect in every way he is extremely active loves eating and his talent is to bring a smile and feeling of warmth to every person he meets. The day Hamza was born a transformation took place. I changed. I became stronger and happier. This super star “Hamza” brought about so much change in my life. Today I stand proud to be a mother of this amazing human.

I have learnt what works for me and my son and what doesn’t work. Nothing in life works out how anyone says it will. It’s up to you as a mummy to realise that this is your blessing this is your purpose and you decide to be positive or negative about the cleft journey. When mummy is happy, baby is happy. Having a baby affected by cleft lip and palate has taught us to love unconditionally to have patience and enjoy every moment. We have learnt to take one day at a time. We have a long journey ahead of us but we will be strong for our son.”


If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage


LTR: Lynette Dean, Heléna Cullis & Sarah Barnes

This announcement is bitter sweet for me to write and comes at a time where Cleft Friends moves into double digits. Sarah Barnes is handing over the role of Clinical Advisory for Cleft Friends a project of Smile Foundation to Lynette Dean.

Sarah has been the glue in Cleft Friends since 2012 when she joined the Smile Foundation Team in her capacity as a Vodacom Change the World Volunteer. She has mentored and journeyed with Cleft Friends from conceptualization until now. We started out merely with a website and big ideas. Thinking back to the first training we hosted in 2012 and then thinking about the 25 trained support moms nationally that we have to date. The gazillion drafts of the “Cleft Lip and Palate Parent Guide” we endured and wrote and re wrote until we were both happy. Establishing the Cleft Friends regional Whatsapp groups and managing the conversations. Sarah has played a vital role in establishing the phases of support that Cleft Friends uses to support mothers i.e. survival phase, emotional phase and moving forward phase. Together we analyzed the start, middle and end of a lived experience for someone born with a cleft lip and palate. By “end” we mean end of surgeries needed for their specific diagnosis and input from a cleft team relating to each person individually. We tackled the emotions experienced by parents and how we can empower, educate and advocate all South Africans affected by cleft lip and palate. Sarah has provided on-going support for the Cleft Friends support moms nationally for the past 7 years. She has been the go to person for all things ethical and support related. Sarah we will miss you! Your prescribed ice-cream moments after feeling overwhelmed have always and will always be good medicine to our team.

I have known Lynette for over a decade and am excited to have her join the Cleft Friends Team. Lynette is a counselling psychologist based in Port Elizabeth.  She began her private practice in 2001, after completing her internship at Hunterscraig Private Psychiatric Hospital.  She has been involved with Smile Foundation for several years as a Psychologist in the Port Elizabeth region.  In her private practice, she has worked extensively with women’s mental health issues.  She does work with the couples undergoing infertility issues and also works with parents of premature babies, helping them cope to the challenges in the NICU.  Her work also involves working with women experiencing Post-Partum Distress and Anxiety and was the Port Elizabeth contact for the Postnatal Depression and Anxiety Group of South Africa (PNDSA) till it closed a few years ago. However, she has continued to work with new mothers adjusting to motherhood.  She is a mother and a proud grandmother.

On the 6th of May 2019 we met at the Smile Foundation Head Office for an official hand over from Sarah to Lynette. We look forward to the next phase of Cleft Friends and growing from strength to strength.

Closing the gap!



#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage


This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

This post is dedicated to Joel Brave Cullis who turned 10 years old yesterday 14 May 2019. A boy who has a strong will, determination and who is going to go far in life. He is our champion. He is in Grade 4 and is writing his first exams this term. It feels like we are writing Grade 4 exams too with all the revision and studying we are doing at the moment.  Joel made the U/11 A Rugby team at his school this year, something that impacted his life greatly. He was overcome that kids had said he wouldn’t even make the C or D teams and that he didn’t belong in the A team. Every time he came home and said he was still in the running for the A team and his name was called out, hope started to rise in his heart. The day he came home and said he had made the team it took him a full day to comprehend what that meant and that he was good enough. When Joel puts his mind to something he does it with all his might. On the rugby field we can see when his head is in the game or not and when it is in the game he shines.

Photo Credit: Abigail Sweeney

To a large degree we thought Joel wouldn’t battle with being bullied or teased as he was born with a cleft palate and not a cleft lip and doesn’t have a scar on his face. However he does sound nasal and when he has a cold he sounds extra nasal. Kids can be very direct and often ask him why he sounds “weird”. We have this discussion on an ongoing basis that the kids who say the word “weird” are misinformed that he sounds nasal not weird. We encourage him that kids are teased everyday about all sorts of things some have freckles, others have ears that are bigger or hair that is too red etc. From a parenting perspective it is hard to back off and allow him to fight is own battles but we know that empowering him to cope with bullying is better than fighting his battles for him; He will walk away with a better feeling of success because he did it on his own. We have on occasion contacted his teachers to discuss certain incidents when Joel has asked us to. He is in an amazing school that has zero tolerance for bullying and he knows he has teachers who are there to look out for anyone who may feel isolated or bullied. We feel that this is his story to tell one day and so can only guide and love him from where we stand. We are told that kids affected by clefts often feel like they have a permanent cold, we can relate to this as Joel is old enough to communicate what he is experiencing and how he feels.

He is due to see the ENT for a check-up and we are sure this will clear up the gunk in is nasal passages and alert us of any concerns. To date he has had 5 sets of grommets. I emailed Speech Therapist Georgia Jammine re his nasality and she wrote back saying the following (I’ve included this as sharing is caring and maybe this will help another family affected by clefts):

“The most common reason for nasal speech in a child with cleft palate is velopharyngeal insufficiency i.e. a soft palate that is too short to reach the back wall of the throat, in order to close off the nose from the mouth during the production of pressure consonants (p, b, t, d, k, g, s, z, sh, zh, f, v, th).  The best way to check the length of the soft palate and its function during speech is by means of a video x-ray (videofluoroscopy) or by endoscopy. If the palate is indeed short, then obviously Speech Therapy cannot make it longer. That would require surgery. Only if  the nasality is inconsistent, i.e. if the soft palate manages to reach sometimes, although not always, and Speech Therapy help to make the child aware of what he is doing on the ‘good’ sounds, so that he can do the same on the other sounds.”

Georgia has specialized in cleft lip and palate and welcomes questions should you want to bounce something off her re your child’s cleft experience and speech: georgia@jammine.com

Once he has had his ENT check-up we will revisit our local Speech Therapist and Plastic Surgeon to follow up on Joel’s nasality. The best advice we were given re clefts was that it is a journey. Up until now we as his parents have been steering the ship re his check-ups with the cleft team and it is refreshing to have his voice in the conversation. Joel asked us the other day how he can stop sounding nasal and he wants to go for the check-ups. It’s a whole new experience having his voice in the picture re his cleft care. We are grateful we have taught him to ask questions.

Looking back over the past ten years it’s hard to find the right words to fully describe the gratitude we have experienced on our cleft journey as a family. We never planned to get on this journey however this journey happened and we continue to overcome and make the best of the ride. In the beginning we wanted to focus on our own journey and move on with life and we are so glad we didn’t. We are glad we dug deep and reached out and wanted other families to know they are not alone. We have written our story so many times and feel it is best said in the parent guide on the Cleft Friends website on pages 6 and 7 you are most welcome to read it here: http://www.cleftfriends.co.za/cleft-lip-palate-parent-guide/

Closing the gap!

Heléna & Matthew


#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage


This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

This story has been sent to us by one of the most courageous moms on the Cleft Friends team. We can say this with full confidence that Nelissa Xotyeni has not only overcome the challenges faced with having a baby affected by cleft lip and palate but continues to overcome challenges. It is suspected that her daughter, Amyoli, might have Mosaic Down Syndrome too. Amyoli’s full diagnosis is still being made and so at the age 5 years old we celebrate each milestone with Nelissa as Amyoli grows and develops at her own pace. If this article reaches anyone who can relate to Nelissa’s lived experience with Amyoli please feel free to contact her directly on Whatsapp 082 369 6781. Other organizations in South Africa who can shed more light on genetic disorders and rare diseases are Genetic Alliance South Africa and Rare Diseases South Africa.

“Amyoli Khazimla Xotyeni was born on the 25th August 2013 at 08:23 at Greenacres Hospital, Port Elizabeth.  She was born with a cleft lip and palate.  I had never heard of it before in my life and we had not seen it in the scans before birth, so we were not prepared emotionally for anything.  But due to God’s graciousness, I decided to deliver in Port Elizabeth, where my mum was and my hometown is.  In East London, where I work, there was no good structure for cleft support, to my knowledge at the time, in comparison to Port Elizabeth. 

So right after delivery, my doctor immediately explained what my daughter had and said that a plastic surgeon would come and see me to explain what cleft lip and palate is and the journey that we would embark on.  She also had a birth anomaly called, urachus cyst.

So my first lesson started that day, and since that day we have been on this journey, going strong.  We have weekly sessions of Occupational Therapy which we started in the month of July 2015.  We started Physiotherapy after Amyoli’s first birthday, on the 25th August 2014.  

In 2015 we went to see a Dermatologist for the eczema she had on her body and face. The doctor noticed linear marks on Amyoli’s body and that consultation was the longest I have ever had with a doctor, because he was paging through his research dermatologist books and research sites, and also examined Amyoli’s body, besides the eczema, he noticed something he termed as being “whorled nevoid hypermelanosis” on Amyoli’s body which is a pigmentation disorder.  When we were in Port Elizabeth about a month later for a check-up, we brought the aforementioned to our Paediatrician’s attention who indicated that there is a high possibility that Amy may have a genetic disorder that the initial test, on her birthday, did not show.  There was also speculation of some sort of mosaicism, big words with no confirmation.  It would be great to understand what may have caused Amy’s cleft lip and palate, her brain atrophy (yes we had head scan the previous year in June, whilst Amy was in hospital for chest infection) and her delayed gross and fine motor development. 

In 2016 we saw a Geneticist who dismissed autism from Amyoli as well as the dismissal of Cerebral Palsy.  She then indicated that we need to do an EEG (Electroencephalographic), which we did, this showed that Amyoli does not have any sign of epilepticforme activity in her brain. We are now left with the skin biopsy for chromosome activity.

We have had the Eelctroencephalographic screen, and thankfully Amyoli shows no sign of any sort of seizures.  That is clear.  We still have to go for a skin biopsy in an attempt to confirm the initial recognition of skin disorder that our Dermatologist has seen. 

My daughter is 5 turning 6 in August 2019. She has started crawling and moving around the house.  Crawling, can you believe it?!  This is a milestone we have celebrated with her.

Our cleft journey is slow paced as we move as our doctor guides us, we will get there. Amyoli and I have attended 2 sessions of Alternative and Augmentative Communication sessions and continue to try communicate with each other.  We still don’t know how this will progress in the long run. Amyoli is at the brink of wanting to walk which is so rewarding and wonderful to watch. Our Geneticists suspects that she might have Mosaic Down Syndrome.  But we shall have a diagnosis soon.

There is a positive and constant change in Amyoli each day.  She is very playful and very happy go lucky child, who is independent in her play time most of the time. She is a strong-willed and determined little girl who inspires those dear to her daily.”

Nelisa Xotyeni


#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage

Contact Details

Email: info@cleftfriends.co.za
Phone: (082) 393 1206

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