Run For Cleft
I would like to share with you a very personal journey about cleft palate, which I am finally ready to admit that I was a cleft palate patient. This journey started when my aunt suggested that I meet a specialist at the general hospital. It goes back way in 1999, when I was in form 1 (13 years old) if I remember this correctly. Me and my brother, who is also a cleft palate, was introduced to Dr Lim (now known as ‘Miss Lim’ ) to undergo a cleft palate treatment.
Now, what is cleft palate? Cleft palate is a condition where you are born with what look like a tear upper lip or opening in the upper lip (known as ‘cleft lip’) and ‘palate’ refers to cases where the opening extends into the nose causing difficulties like, feeding problems which means, if you try to give milk the baby it will come out , speech problems – which means you will hear nasal sound when we talk , hearing problems and may face frequent ear infection.Fortunately my case only goes up till feeding and speech problems, still, i did not face much difficulties like other worst cases since the surgery when I was born. Basically cleft palate are a condition where the lips and palate are not fully formed during the development.
At that time, there was a lot of question about how I got my scar, some of my friends back when we were young thought that I got ‘kenan’ meaning that you superstitiously thought that my father went fishing and caught a fish when my mom was pregnant with me, and other speculations, but being young and uninformed of my condition, I don’t know how to answer that except that I was born this way.
I am lucky and fortunate that my parents treated me no different from my siblings and so much love, that I never felt any different than normal kids. I was a happy kid that even when kids say stuffs at me, I don’t even care what they thought of me because to me, what is important is my parents and family loves me the way I am, and that is enough.
But I would not lie that my condition did give an impact on my self esteem, and who I am now. As I grew up, there are things that I became insecure about , there are things that I became confident about, those were the teenage years where your self esteem and the need to be accepted pretty much depends a lot on how you are treated by the people around you.
So when I am outside of my home, I would face a lot of childish name calling, making fun of my condition and pointing it out, but at home I felt safe because my family do not treat me like the people outside treated me as. However, I was also blessed with good friends who accepted me the way I am, these kind of friends I am forever thankful and lucky to have the privileged to be friends with because they help me a lot during my growing up years.
Despite facing all the negative comments about my condition, I did not mind and take it to heart for they were all as ignorant as me back then and were after all just kids trying to fit in. Just a bunch of people who may just be insecure about themselves , therefore makes fun of people to boost their own confidence level. It tells a lot about themselves more than about me, so I got past that phase and moved on with my life.
However, coming across this cause Run For Cleft , I feel that it is important to share this with you because its not just about donating your money to a little box or bank account. But its ‘How’ and ‘What’ they will be spending YOUR contribution to, its about ‘Who’ will benefit the contribution you give to even if you may not see where your money goes and what it does to help these cleft palate patient directly.
Therefore, the only way for me to help this cause is by sharing my own story as a cleft palate with anyone who reads this so that people can be aware and understand better about cleft palate. Your contribution will in so many ways impacts the patient life before and after the surgery.
The reason why I use the word ‘contribution’ instead ‘donation is because a society can only become a society with the cooperation of its own community. Every individual in the community we live in plays their own role, based on their own talent, skill and knowledge. Each one of us ‘contributes’ something to form a better society. So never underestimate the power of one single individual like you, can actually help another individuals life just by the act of giving.
Back then I see charity giving as putting money on a little box and you don’t know what happens. Little did I realize that money goes from one hand to another hand, which means, for every Ringgit you contribute, will be passed to the committee who organize this event, who will then reach out to the cleft palate patients in need, there are many cleft palate patients in the waiting list , hoping for a chance to undergo surgery because they could not afford to pay for surgery, some, like me are subsidized by Malaysian government (some countries may not have the same privilege and I’m not sure if insurance covers this kind of surgery)
One thing many people do not know is that being born as a cleft palate leaves a deep impact to the patients itself because they have to grow up with the cleft palate until they get their surgery (if they get treated). In some case not in Malaysia, there are parents who hide their children at home because they were too embarrassed to go out in public with kids likes us.
( I hope there aren’t any extreme cases that pushes the cleft palate kids to attempt any form of self harm due to constant bully or pressure from the society they live in.)
In other cases where the kids do get treatment, the patient no longer have difficulties in eating, talking and can now smile again thanks to the surgery which can only be a reality by YOUR contribution.
Because I believe that any of the patients will in some way suffer from low self esteem. If their parents and family are supportive , they will not have much trouble in growing up. But if their surrounding are negative and puts people down through endless taunts and bully, it will not be easy for them to still be smiling. So it is normal that you may see them never smiling, even when they are happy because some of the patients was born with their jaw slightly longer than the other either the lower lips or the upper lips. I will explain to you in the next few paragraph.
So it is my social responsibility to share with you the misconceptions, and help you understand what its like to be a cleft palate and how YOU can help put a smile back on them.
My first surgery would have been when I was born,the timeline of the surgery i don’t know much about except there was two surgery, one to close the palate, second to close the lips, leaving me with a scar on the outside. My lower lips are slightly away from my upper lip, I can still eat fortunately, but I do have nasal sound when I talk. But the sound were not as bad as it was back before I had my surgery.
The surgery that changed my life was when I started my treatment with Miss Lim (a cleft palate specialist) , at that time, it was not just Miss Lim treating us (me and my brother) but also Dr Khoo, the orthodontist. I can’t remember how many surgeries I had to go through within 10 years time more or less. There is a few year break where I don’t have to undergo operation before we move to the next surgery.
This is where I started wearing my braces and took out a few teeth and even bones to be implanted on my gum and nose. I have approximately 22 little screws inside my face which half of it have been removed after a Sinusitis infection.By now your jaw might be dropping reading this part,, while my jaw have already been closed back to a normal position
Chronologically I cannot remember, but I do remember certain major surgery that have impacted my life. First, the surgery when I had a small bone taken from my left hip implanted on my upper gum so I can have a better positioning of my teeth later on. Scientifically I cannot explain because I am not a doctor and its been so long since I was explained on the procedure. The good thing about the cleft palate treatment is that every time they suggest for surgery, the patients will be informed on what will happen and what is the procedure of the surgery before they agree for an operation.
Miss Lim, as I recall someone told me were one of the top specialist in cleft palate not just in Malaysia but also in Asia. What touch me is not her being at the top, but her dedication and passion towards treating the patients, even if she would better off making money in private hospital, she chose to stay with the government hospital. She also trains her team so that they can also be a better surgeon and treat the patient as good as she is. Her speciality in stitching cleft patients from inside out so that it will not leave scar are admirable. I only know about her skill from another dental friend that time when she had a good look at my mouth. On top of that, some of my friends who was studying dentistry were oh-so-awed by her skill that it felt a little awkward to be ‘admired’ as I am the product of a good brand. Lol!
Going back to the surgery, I remember that I could not eat for about a month or so , to give time for my wound to heal. I can only go on liquid diet before I can eat solid food. Liquid diet means, at the beginning, I can only drink plain water after my surgery, and then supplement drink before moving to blended food like baby food. At this time I experimented a lot with my porridge to give a variety in every meal. I even had durian with milk for dessert because I am not allowed to chew my food because my teeth is not strong enough to be chewing. During this time I appreciate more on the ability to chew and eat because I had to resist myself from eating solid food.
My parents were very supportive because at the beginning of my diet, they will join me by eating porridge. I also receive a lot of moral support from them especially my mom and also my sister who help to stay with me at the hospital through out the time I was hospitalized.
At the hospital, I learn a lot about life more than outside, there was another patient next to me who had countless surgery because her bone needs to be developed through some sort of implant, she can only drink supplement drink all those years she was hospitalized. I forgot to mention that at the time I cannot talk because my teeth are still recovering from the surgery so I would normally write what I want to ask and ring the rattle my dad made out of empty bottle and a small coin/stone if I wanted anything. As soon as I could get up on my own from the bed, I would walk around and swing by the next patient near me, I dont remember what I did but we bonded even if we could not reply to each other. By the end of the last day, I gave my rattle for her to use when Im gone. That was the last time I saw her.
I also remembered that every evening, the patients and their guardian will gather around the television set to watch ‘Bawang Merah Bawang Putih’ series that was a very big hit in Malaysia that time. A Malay guardian asked the Chinese patient what the story about , and the Chinese patient would give a summary of the storyline , joined by the newbie Indian guardian. So, at that point, I realize that when you are sick, there is no difference between us and being sick somehow brought us together. The Chinese patient were an avid Bollywood fan, she was watching ‘Jodhaa Akhbar’ when I was hospitalized.
There was several other surgeries, some involve getting out a teeth out of my upper palate, but the most major surgery that changed my life was the ‘Jaw Reconstruction’ . The surgery means that my jaw will be reconstructed so that my lower jaw will be pushed back to normal position of the mouth. That alone, involve breaking some bones and planting and growing new bones taken from my other hip (just a tiny weeny bones in case there is cleft patient reading this, please refer to your doctor) . This time I was on liquid diet about two or three month, but the uncomfortable part was the fact my teeth are all wired up so that it does not move and be in tact within the first week after my surgery. I could not talk at all so for a talkative person like me, it was hard to be silent. Still doesn’t stop me from ‘talking’ through writing on my notepad.
I am very sure I drove the nurses crazy because of my curiosity with everything around me , I would ‘ask’ a lot of question lol! I apologize if I gave them a hard time especially to my mother who accompanied me every night sleeping uncomfortably on the chair, going back and forth from home to the hospital. I admit that I can be quite a challenge to deal with back then, I was after all were just a teenager. Even my doctor did lost patient once when I refuse to do some things she asked me to do. But eventually I listened to my doctor’s advice.
At this time, I got to know a 10 year old kid who have been staying at the hospital since she was 5 or 6 years old from Sarawak because her body was burnt during the fire. I can’t remember how many percent of that burn on her body but she had to stay for a few years to get skin tissue planted on her body. She is the strongest kid I am fortunate enough to meet. The fire caused her to somehow only able to count like 5 or 6 years old because she did not go to school. And she stays alone because her parents could not afford to stay all the time with her. She was always loved and cared by the doctors and nurses there. Every morning she would help the nurses to put on new bed sheet, and at times she will come and visit me. The little girl was always cheerful and kind to everyone in the room. Its too bad that I did not manage to stay in contact with her. I hope that she is doing well now wherever she is.
By this time, my face look very different from before and it took me some time to get used to the new look. This happen after I finished my school, I was about 18 years old since my last surgery. I have to admit that at first there was an internal conflict when I made the decision to undergo this surgery, because it will change my look. But after much consideration and reference to relevant people, I decided to undergo the surgery for the sake of health and not because I want to change my look. There was several other reason that the doctor advised me on which help me to understand and more convinced that I am making the right decision. I also talked to a former patient who help me to understand my condition better. But most of all, I have my parents and family supporting my decision.That was enough.
Most of my school friends could not recognize me had I not come to school and reintroduced myself. There were time also, that I would pass by old friends unnoticed that it is me. Only those who is close to me or have met me after the surgery would recognize me. Also, my nasal sound reduced a lot and the doctors were very relieved that I don’t have to go to speech treatment because when you change the jaw position, it will change the way you talk.
In the beginning, some words, like ‘S’, I cannot pronounce too quickly so I would just take my own time whenever I talk. Some foods I can’t take much such as ‘Siput Sedut’ , a type of sea snail ( Cerithidea obtusa ) because I can no longer suck it out as strong as I used to.
At this stage, my dental hygiene takes a lot of effort to stay clean because there’s a few things I had to do whenever I need to clean my teeth. Things that requires me to change the rubber band tied on my teeth, or brush in between the braces, gargling my oral wash to heal the wound inside my mouth and rinse it out using mouth wash.
Through out those years, I was lucky that my orthodontist was very strict with me and made sure that I don’t slack off taking care of my teeth because she would be able to detect it haha. Miss Lim was more lenient but she can be quite strict if you purposely do not follow her advice. So they make a very good team along with the nurses and training doctors under her.
By the time I was in my university, I undergo another surgery in my first or second year of my undergraduate. It was a Rhinoplasty surgery that helps to reconstruct my nose by implanting a small bone taken from one of my rib because there was no bone somewhere on my nose. That is why there are patients who have flat nose because their nose bone may not be fully developed when they were born.
And that is the final surgery I had to undergo for the treatment, however I was rushed to hospital during my final year (about two years later) due to sinusitis operation. Though I had titanium screw since the reconstruction, I was somehow still at risk of infection.So I went back to Miss Lim to remove the infected screw which I was lucky enough to detect early, else it would be a whole lot harder to remove the infected area. By then, all my wounds have healed and settled so it was safe to remove the screws.
However, knowing that I still have some screws left, I would be very careful not to get flu no longer than a few days. Whenever I have a flu, I would make sure I get well as soon as possible to avoid from infection because I still have half of the screws inside my face. Even the doctor I went to his clinic who manage to get a better x-ray of it was shocked to see so many screws inside me. I can only politely thank him for detecting the cause but requested that I be referred to my doctor at the general hospital.
So, heads up for other cleft patients, always refer back to your doctor no matter what, ask to be referred to your doctor and don’t allow other doctors who is not experienced in your history to treat you. Operation involving your face especially cleft palate requires their own speciality which you cannot simply get anywhere. Budding Doctors, do consider this profession for you would learn a lot from this field if you are interested to specialize in.
There are also times where Miss Lim will be operating on other places in the world through charity program to operate on patients who do not have the privilege to be operated on due to financial restrictions etc. Every time I come for check ups, there will be a long que waiting for her. Patients from all sorts of case, not just cleft palate will come to be examined. Normally, my appointment will be put last because I would need longer consultation. So if there are more specialist like her, the que would be less and more patients will be able to treated.
Here is how you can contribute, pour in your contribution to this bank account:
Bank Islam 12195020054868 (Nurfarahin Hamizah)
What is a better way to share your wealth by making other people less fortunate than you happy? What is a better way to be happy than putting a smile on their face? Small contribution, even for a Ringgit can make a difference in their life. So come on and help these lovely budding Dentist to help YOU make a difference in the cleft palate life. Your contribution will help not only put a smile back on their face, but help them eat better, speak better, hear better and mostly be a better person from YOUR contributions!
You can also sign up to join Run For Cleft charity run. You get healthy, spend good time with your family through sports activity, and you get to contribute. Sounds good right?
Below are a photo of me and Miss Lim(and her Plastic & Reconstruction team) whom I am deeply in gratitude of. Also thank you to my orthodontist , Dr Khoo for being strict to me when it comes to dental hygiene and Malaysian Government hospital for their healthcare which we are all lucky to not have to pay much for a very good treatment. Do appreciate little things like the ability to talk, chew, swallow eat and taste all the foods in your life because there are people like us who would be struggling of that if we do not get proper treatment.
Meanwhile, I hope that if any of you know any cleft palate, please be kind to them and encourage your children or anyone around them to be kind to these kids. Focus on the good side of them, encourage their potential, and don’t make fun of how they look because they are born with such condition that they are in no control.
However, to cleft palate patients, I hope that your condition do not stop you from learning and becoming a better person. That your condition will not also stop you from loving people and allowing people to come into your life. Never let your condition stop you from achieving in the future. Learn to accept and embrace yourself , overcome whatever your insecurities and use it as a strength to go on. The only thing that will stop you is not what people call you, not the obstacles in front of you, but the person inside you are the only one whom you have to face and confront with. We are our own worst enemy. So be your own best friend and take a good care of yourself. The words you tell yourself everyday are the ones that will shape who you will become in the future. Don’t let other peoples word get into you and be your own person. What is important is that you have a family who loves you and that you are imperfectly perfect just the way you are.
The good thing about being a cleft palate is that you will learn a lot about yourself based on how you handle other peoples treatment on you. But, if you ever get the privilege to get the surgery as I did, do remember that looks don’t last but what you do with your life and how you treat people around you will last. So treat people the way you want to be treated but be kind even to the people who mistreat you because they do not know you or know what you are going through. If you have the opportunity, come out and share your story so that more people can know you and understand what cleft palate is about.
Thank you to my parents and family for their support all these years, without them I would not be who I am today. To my friends who accepted the way I am, and to every other kind strangers who did the same even though they do not know me. I hope my story will be beneficial for everyone’s understanding on this cause.
Lets put a smile back on their face and make a difference!:)
(1 out of 700 kids do not have normal face when they are born as cleft)
(1 out of 700 kids cannot milk normally because of cleft)
(1 out of 700 kids cannot eat or drink normally when they are cleft)
(1 out of 700 kids cannot speak normally because of cleft)
But ALL this can change through surgery but what about those who cannot afford to pay for their surgery? YOU can change that and give them the chance to lead a normal life.