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!
My beautiful daughter was born on the 4 December 2002 with a bilateral cleft lip and palate.
I was six weeks along when I found out I was pregnant. It came as
a big surprise as I was currently focusing on getting a job.
Two weeks after finding out I was pregnant I started bleeding
heavily and was taken into hospital. There was still a strong heart beat
however the doctor did advise me to abort the baby after a week in hospital. I
chose to trust in God. I was told she would never make it if I went into normal
labour so I trusted in a miracle from God and waited anxiously until my caesar
date.
I woke up after my caesar and asked for my baby, they said she was
bathing and then she was feeding…I sensed something was wrong. They then came
and spoke to me behind a closed curtain saying that something was wrong with
the mouth of my baby.
I asked them to see her as I didn’t understand what they were
saying. I was in shock as I looked at her. I immediately thought the worst, so
I prayed to God asking for strength and phoned my husband to tell him. We at
this stage didn’t even know what her condition was called.
I had to rely on feeding her with a syringe and as a new mom you
want to breastfeed your baby so you can bond with her, but that was not
possible for me. When my little girl was 4 days old we were referred to another
hospital closer to my parents, as their help was needed, and this was where her
check-ups and operations took place. I started using a syringe and an open
mouth of a feeding bottle (I cut the nipple of the bottle teat so that the hole
was bigger, this is what I mean by “open mouth of a feeding bottle”). I was
reassured to know that she was growing stronger even though it was a challenge to
feed her sometimes but after a feed she would laugh and be happy and I knew she
was full.
The first operation was repairing the lip at five months. When I
first saw her after the operation I was crying tears of joy and also tears
seeing her in pain and not been able to do anything to ease it. Second, third
and fourth palate operations took place and the fifth one was grommets.
When she eats pap and milk, the milk drips from her nose because
she still has a small hole (fistula) in her mouth that still needs to be
repaired.
She is a young girl who is talented, likes to draw, do art, things
with her hands and singing. I thank God for her.
Keletso (16) dancing at the Parys Flower Festival in October 2018
When I gave birth I already had a name for her, Kesenogile,
meaning that God did know about her before she was revealed to us. My mother
named her Kelts, meaning a lesson and lastly my sister in law named her
Nthabiseng, meaning make us happy.
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!
Steven was born on 29 October 2006 with a unilateral cleft lip and palate. At the age of 5 months he received his first operation to repair the lip and part of the palate and second one at the age of one year to completely close it. In 2017 they did a bone-graft, removing bone from his hip to plant into his upper gum to assist with the exposure of the teeth. And in November 2018, he received his braces.
One day he wants to become an Anaesthesiologist, where he wants to do pro bono work in assisting the Smile Foundation with operations. He has a passion in assisting kids that has gone through and is still going through the same struggles he endured.
The first thing is to get one ambassador from each
school (that was also born with a cleft lip and/or palate) to raise money for
Smile Foundation and create awareness for cleft lip and palate patients.
Then he wants to be a supporting channel for kids
that still needs to go through surgery and treatment through the Smile
Foundation.
He also experienced being bullied about his looks
and he wants to put positive words out there to assist them with this.
Last but not least he wants to make sure that they
know, nothing must ever stop you in achieving what you want to do or become.
Click here and remember to hit the SUBSCRIBE button!
Anesta – Proud Cleft Mommy Cape Town, South Africa
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 was sent to us by one of our specialized support moms Roza. Roza lives in Bloemfontein and has been trained to be a Cleft Friends support mom, her daughter was born with a cleft palate as well as Pierre Robin Sequence; a rare disease that she explains in her story. If this story reaches parents who are also affected by PRS please feel free to Whatsapp Roza on 082 698 8571. She has a wealth of knowledge from her own lived experience with Lilliana and will be able to connect you with other parents in South Africa who are also facing similar challenges.
“Our journey started just over 4 years ago, a journey that in the beginning
felt like it would have no end. With having a healthy pregnancy our
big day arrived to welcome our biggest blessing into the world. Well to our
biggest surprise our little Lilliana came with one of the biggest surprises, something
that has changed our lives.
Lilliana was born the 2 July 2014 at 08h20,
weighing 3.29kg, a beautiful bush of hair all 10 fingers and toes and what
looked like completely healthy. To our shock after having Lilliana turn a
slight blue in colour, the nurse came in asking if I saw that my child had
a hole in her mouth. The first thing we did was ask Google… And well
it was the first time that I had ever heard about or even seen a cleft.
That evening Lilliana’s paediatrician arrived and
immediately admitted her into NICU, for non-medical terms the NICU is where all
premature or babies that are born with a condition of some sort go to. Well
here I was a new mother not knowing much about any of this and facing what felt
like a one huge mountain to climb.
48hrs after Lilliana’s birth we received the
diagnoses: Pierre Robin Sequence. Not only were we dealt with a cleft palate
but we were handed a rare disease and something that not many knew of or how to
deal with. So we were left to research and to try and find out as much as
possible. Most of you reading this are probably wondering what Pierre
Robin Sequence is.
PRS is a rare disease, it consists of a number of
abnormalities affecting the head, face, smaller than normal jaw, an enlarged
tongue that is placed further back than normal which in turn obstructs a very
narrow airway and cleft.
At 4 years old Lilliana, has had to endure more
surgeries than most adults. Her very first surgery was at 11 days old a
glossopexy (pulling her tongue forward to help open up her airway), after 2
days later Lilliana managed to pull her stiches loose. At 24 days old her
next surgery was scheduled and that was a Mic-Key because Lilliana was
struggling to feed.
After 30 long days we were finally discharged and
sent home with feeding lines, and an oxygen machine. All this had become
our “normal’’. Times were tough and yes it was difficult to accept but we
managed and survived it. Lilliana’s soft palate repair was scheduled for
the 18th February 2015, the operation was successful.
I could carry on with Lilliana’s story for days, if
not years and literally write a novel but this is not my intention.
I
want each and every single one of you reading this is to know that yes things
may seem tough, yes things may seem difficult but if there are words that I can
leave you with, they would be:
Never lose HEART, Never lose HOPE, Never lose FAITH, Never ever GIVE UP. All this does eventually get easier and even in the darkest of times never forget that.”
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!
My name is Vicente Celestino Camarena. My parents named me Vicente Celestino because in Spanish my name has a strong meaning. I am a warrior, a conqueror, and a gift from God. I’ve had a tough journey but with the love and attention of my parents I have the strength and will to surpass anything and everything that may come my way. I was born May 22, 2018, I’ve had numerous appointments and weight check-ups because I was not gaining weight, matter of fact I was losing weight. My parents were stressing out trying to figure out what they were doing wrong but they never gave up on trying new methods and new bottles until they found Dr. Brown specialty bottle and going up on calories on my formula (from 22 calories to 24 calories). Shortly after at three months, I had my lip surgery which from there on I gained weight with no problem, went down on calories, and I didn’t have to use any special bottles. I started with solids at 4 months because I am a hungry little boy and from there on I have been healthy and my doctors’ are so proud of how much progress I have made in such a little time. My parents went from liquidizing my food to eating straight solids. Now, I am like any baby! Just like the meaning of my name, I am a warrior, I am a conqueror, and just like how I went through lip surgery as if nothing ever happened, it’s exactly what I am going to do with my palate surgery that is coming up.
To my fellow cleft parents don’t give up, don’t ever stop trying new methods, stressing out is okay because it means you want the best for your child. Join social media groups just like Cleft Friends because we are all a big family and here to help each other out because at the end of the day we have a similarity, our precious babies affected by clefts are gifts from God.
You are not alone!
Story sent by Layla Pomerino A proud cleft mommy 🙂
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!
Photo Credit: Gerdie de Lange
Milanje is the Cleft Friends cover baby!She was born with a unilateral cleft lip & palate. Her photo has traveled the country as an inspiration of hope for all new families affected by cleft lip and palate. The way her mom, Biance, is embracing her and kissing her wide open cleft speaks about her acceptance and unconditional love for her baby no matter what.
Biance, Milanje and Francois (before op)
“Wow, it was so hard seeing our tiny princess disappear behind swinging doors of the theater with her father. Right then and there my heart broke into a million pieces. Nothing could have prepared us for how amazingly different she actually looked after the operation. Our bonding had to start from scratch. It took me a good two weeks to get used to her new face.” Biance de Villiers, Port Elizabeth, South Africa.
Milanje (4)
We have watched Milanje grow and have walked the cleft journey alongside her family since the day she was born. Milanje has had two cleft surgeries and is now 8 years old. Biance is one of our trained support moms and is hands on with new families, affected by cleft lip and palate, as they start their cleft journey in the Eastern Cape. It was an absolute joy looking back and finding photos of this sweet family since 2011. To see how Milanje is excelling at life and to hear how well she is doing at horse riding is a pure delight. Read more from a post on her school’s Facebook page. She is our very own Cleft Friends cowgirl – YEEEEHAAAA!
Photo Credit: Erika
In mid February 2018 Milanje had her
first horse riding lesson at Altona Equestrian Centre, under the amazing hand
of Alma Hough. She has always had a love for horses, so this was a dream come
true for her. She loved every second. It wasn’t just fun and games, as she had
to do exercises to become riding fit and to manage her balance in the saddle.
She was very dedicated and did her exercises morning and evening. She has a
very close bond with her pony, Peter Pan, who also had to learn all the Western
Games with her. He was not the easiest pony, as he was abused badly. He was
rescued and given to the centre where she is riding. She loves him very much
and he has come a long way too.
This year we registered her with
Sanesa (South African National Equestrian Schools Association) where she
represents Curro Westbrook during events. She is also registered with the Port
Elizabeth Western Mounted Games Club (PEWMG).
In January 2019, she took part in her
first Qualifier for Western Mounted Games. She did not place in any of the
events during this qualifier. She did however get the award for “Riding the
most difficult pony”. Peter Pan did not have a good day. She was very
disappointed, but was determined to work harder and try again in Qualifier 2.
On 3 Feb she took part in Qualifier
2. In this event she got a 4th place in Keyhole and also placed 8th overall in
her division on Level 0 primary school Sanesa riders. She also won the award
for the “Most improved rider.” She is the youngest in her level with
the least experience.
On 17 March, she competed in
Qualifier 3. During this event she placed 9th overall for Sanesa riders and 7th
overall for club riders. She also placed 3rd in the Figure 8 flags game for
club riders and 3rd place for Poles II for club riders. She also won the
“Most Improved rider”.
On 7 April, she competed in Qualifier
4. She placed 8th overall for Sanesa riders, 4th place in Keyhole for Sanesa
riders, and 2nd Place for Keyhole club riders. She got the “Tiny Tot of the
day” trophy for being the rider who had a good day in the arena, displayed
excellent sportsmanship towards her fellow riders, rested her pony well between
games, made sure he had food and water. They call this the Golden Combo.
Milanje will compete in Qualifier 5
on 5 May 2019. She is determined to obtain a 1st position in her game before
the qualifiers at the end of July.
“A Mother’s sin”. This is the title of a book written by Mia
Henry of Port Elizabeth. I haven’t read the book, but I heard the author’s
interview on local radio when the book was published, and I immediately
identified with it. As mothers of children born with congenital defects, we
beat ourselves up with the guilt of what we could have done differently to
avoid the hardship of hospital admissions, surgeries, therapies and teasing
that our children will need to face. This guilt is a Mother’s sin!
My son, Thomas, turns thirteen this year! Thirteen! I wish I
could say I wouldn’t have had it any other way, but honestly, the emotional
turmoil the last thirteen years have brought have not been easy. My son was
born with a soft palate cleft which was not diagnosed until he was four months
old. I endured being told by a paediatrician that the quality of my breast milk
was the reason my son wasn’t gaining weight to trying every teat on the market
to get him to drink more than 25ml in an hour. My son had had seven hospital
admissions by the time he was seven years old, for cleft repair, two inguinal
hernia repairs, 2 MRI’s, a Baker’s cyst and several sets of grommets. Do not
underestimate the toll that these hospital admissions and doctor visits take on
your little ones. My boy was a ball of anxiety and still struggles with change,
but we have learnt to manage it together.
📷 Jeff Latham photography
Despite these hardships, he has excelled academically at school and represented Nelson Mandela Bay in chess since 2014. In Grade 4 he passed the test for musicality at school and was offered the opportunity to learn to play a musical instrument. He chose the flute! I remember crying when I told the music teacher that he really wanted to play the flute, but I wasn’t sure he would be able to get a sound out because of his cleft palate. She agreed to give him the opportunity. After 8 weeks of trying to get a sound out, she called me to tell me he should probably forget about flute and take up guitar. I asked her to persevere for one more week. She did and at the end of 2019 he achieved 89% for his Grade 2 flute exam with the Trinity board of music.
He is my miracle boy, my pride a joy and this year he enters
his teens. A whole new set of changes and challenges, as braces are fitted and
high school looms, but the last thirteen years have groomed him into a young
man that will be able to overcome any adversity put before him.
Teri-Lynne Port Elizabeth, South Africa xxx
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!
