I have a friend who’s going through trying times.
Six months ago, his daughter was born with a cleft lip. For six months now, he’s endured seeing his little girl go through an endless ordeal of operations and therapy. The pain and confusion reflected in her little innocent eyes during these sessions must not be easy for him to bear.
And it’s only just begun. She will have to go through more surgeries till she’s 18, when she receives her last operation.
My heart goes out to my friend and his wife.
But, more so, my heart goes out to little Natalie, who was born with a cleft lip.
Fortunately for Natalie and her parents, there are two groups in Singapore devoted to supporting families of children with cleft palates.
Under the care of an expert surgeon who works with Operation Smile, Natalie has gone through a series of marvellous transformations.
She looks like such a happy little gem my heart breaks to think of all the pain she has to go through.
Unfortunately for Natalie, the physical scar from the surgeries will never completely disappear. As much as she looks almost normal now, she will bear the mark of her ordeal for life.
Society in general might be mature enough to accept minor facial deformities by the time she grows up, but she might still experience her fair share of jibes and ridicule when she starts going to school, where unthinking, curious, insensitive peers abound.
We can all play a part to help.
We can educate ourselves and we can educate our children. Cleft lip patients are people just like you and me. They deserve a normal life.
And that’s what Operation Smile Singapore and the KK Hospital’s Cleft and Craniofacial Centre have dedicated themselves to — helping cleft lipped children in Singapore grow up to a normal life.
It can be done.
How you can help
- Take a moment to look at the Operation Smile website to learn more about the condition. Donate if you can.
- Attend the WAFF Carnival on July 13, 2008, at *scape Youth Park.
WAFF (Warm and Fuzzy Feeling) seeks to increase awareness of cleft lip and palate conditions, as well as raise funds in support of the Cleft and Craniofacial Support Group.
- Attend the IGNITE Music Festival 2008 at Republic Polytechnic on July 25-26 because this event also supports the cause.
- Spread the word.
Natalie can’t talk yet.
But if she could, I’m sure she would want to thank you personally for your support.
Help her to smile better.
Firstly, thanks to QY for putting this post up (I asked her to do it and she was kind enough to do so). Natalie is my daughter, and is making us all incredibly happy. The plastic surgeon who operated on her is part of KK Hospital’s Cleft and Craniofacial Centre (CCRC) – another incredibly important group of people, who need thanks.
Secondly, the causes that she mentions are incredibly important. Operation Smile’s work is amazing – the transformation of the children is stunning and the families get their child re-made in a form that society finds easier to accept. Bear in mind that even in our first-world society of Singapore I have been told that my daughter’s cleft was a punishment from God and other people have mentioned the old “using scissors on the bed while pregnant” myth. Now think how 3rd world societies react with all the old superstitions.
Cleft lip and palate is, however, more than just cosmetic – it can be fatal if the cleft gets too wide it causes children to choke on their food – it can also cause serious speech problems that in turn lead to ostracism and self-esteem problems. Please do take a little time to visit the websites and, if you can, give some money. Operation Smile reaches as many children as it can, but it is never enough.
Thanks
Jesta
Your daughter is really cute, Jesta. How often does she have to go for surgery? Hope everything will go through smoothly. I have 2 kids of my own too. I’ll drop by Operation Smile when I have the time. Nothing wrong with a little more knowledge, I guess.
Thanks, I think she’s lovely.
She’s got one more surgery this year – to close her palate (and possibly her gum). After that there will be a series of surgeries at different stages of her life – she will need bone grafts into her gum at about 6-years old, for instance. She will, we hope, finish the series when she turns 18 and has stopped growing. During this time she will also have to go for dental work, and speech therapy. She has also had problems with her hearing because her Eustachian tubes don’t work properly yet, so she needs to have grommets put into her ear-drums to drain them.
It’s a long road, but it’s worth it…
Jesta,
There are times that we need to ignore rubbish that people spew. Look, I know it’s not going to be an easy road but your daughter is a precious and priceless! She’s such a bundle of joy and someday, she’ll be able to thank and appreciate the long road that both you and your spouse took for her. Will keep your daughter in prayers. And to keep your sanity, ignoring others is the best at times.
Monster, very well written. I know posts like these mean a lot to parents with special kids. Having worked with special kids, I know how hard it is for parents to deal with everything and I’m sure posts like these help to encourage them a lot.
Monster – Appreciate your thoughts…
Jesta,
Welcome. I’ve worked with kids with special needs and it’s always the hardest on the parents.
Monster: In this case it is easier because we can eventually fix the problem. I fall apart when I think of the parents in the 3rd world countries that Operation Smile goes to. They have to live with it…
I invited Operation Smile to the school I teach at to give a talk. They showed a video that just about broke my heart.
thank you, qy, for putting this up. hv heard of operation smile from the upcoming Ignite Music Fest but not before that even though i’ve worked with kids with special needs before [specialty is in hearing impairment].
there will always be myths and misconceptions about, for the lack of a better word, disabilities [in general], especially in a [quite closed-minded] society like sg. but things are changing, even if v.e.r.y s.l.o.w.l.y. and it’s up to people who are in the know to educate those who aren’t.
natalie’s a lovely child, jesta. i won’t profess to understand how you feel or have gone through, but qy’s entry has touched a chord in me and i’ll drop by operation smile today. lastly, have faith [and let me know if you need any further (non-medical) assistance for her hearing issues]!
i heard that there are medicines that can remove scars.
but aint sure if this medicine is sold in singapore.
We have quickly become experts on all the various things that there are for treating scars. Sadly, the best medicine is constant scar massage – this breaks down the scar tissue and prevents keloids from forming. Unfortunately, it is VERY painful for the baby and therefore it break our hearts too.
We’ve just been told by the plastic surgeon that we have been too gentle on Natalie, so she will have to go into the hospital every day for a while to have some really hard massage by the nurses – they tell us that we shouldn’t be in the room…
My only consolation in all this is that Natalie will thank us for it later.
I should add, in case all the tears above seem hard to bear that Natalie seems to recover fairly quickly from the massage sessions and is actually a very smiley baby. She has started to laugh when I play games with her which is so wonderful…
Well done QY. I think everyone needs to be more aware of people with cleft lips. It is easy to laugh at people with cleft lips, just because they look different. I honestly think a lot of people are still not mature about it.
I have a friend who had cleft lips for the longest time until her late teens. She suffered many years of ridicule (believe it or not, even all through tertiary education) before she finally saved enough money to go for an operation. I am glad that she grew up strong and finally got happily married.
I also work with students. I am currently working with a kid who has cleft lips and speaks with a lisp. It is tough to help the kid manage with the kind of unpleasant ridicule and jokes he gets in school and outside of it. I can only imagine how a parent of such a child feels.
Kudos to you, Jesta. I wish your daughter, Natalie, all the best. With a supportive and caring parent like you, I am sure Natalie will grow up strong. :)
So yes, I sincerely urge people to, at the very least, have some empathy and sensitivity. Not just to people with cleft lips, but also to anyone who is ‘different’. There is much room for our society to improve on, in terms of empathy and maturity. Creating more awareness is an important step towards that.
Thanks QY for such a moving post.
Jesta, your daughter has a beautiful smile. Just looking at her picture with her dancing eyes makes me smile. I am sure she will do just fine.
She’s soooo cute!!! I wanna pinch her cheeks! ^_^
mel and Alex: Thank you
modchip: *sigh* I don’t know what it is, but you are not alone. I’m from the UK, and we really don’t go in for pinching babies there. Over here there seems to be a penchant for it – I do hope my daughter grows up with unbruised cheeks :o)
Hmm… This post and the comments stirs my emotion. I can feel my tears building as I read em. I dunno whether it is tears of saddness or tears of joy. I feel sad that Natalie had to go through so much pain at such age, and on the other hand I feel happy for her that she have such wonderful parents and the opportunity for treatment. I need to smoke.
Jesta, you have such a lovely and beautiful girl!
I can’t help smiling when I see her smile.
I wish your family all the best! Stay strong!
she is so lovely. so cute :)
Goonfather: Please don’t smoke because of me… Come down to the WAFF carnival and we can smile together.
She’s purdy! Love the picture of her holding her foot.
And yeah, will donate to the society. All the best, Jesta. <3
Thanks everyone for your comments and your support for the cause! Hope to see you at the WAFF carnival and IGNITE!
I plugged you liao @ http://jaywalk.blog-city.com/smile_natalie.htm
Jaywalk: Thanks
Jesta, your daughter is beautiful and very cheerful and as a mother, my heart goes out to you. Although I will not dare to claim that I know how you feel, but I can certainly empathize. *hugs* and hope that you walk this journey in hope and faith and with lots of support.
Hello all, i cried a bucket when i saw pictures of Natalie. I came upon this blog while looking for information on cleft lip. I am a Malaysian living in Singapore and have two boys one who is in primary one and my second who just turned one yesterday. I am already into my six month of pregnancy with my third and we are so happy to welcome another addition so soon. However, my recent check-up on Tuesday was not as what I expected to be when my gynae told me that my baby boy has a cleft lip. He also cannot confirm if it is a clef palate and will do see in my next scan. As a mother, it is something that I dont hope for but is so difficult to accept at the same time. I am just hoping if anyone especially Jesta can share some light as to when did you find out about Natalie’s condition and what is the cost for the surgery. Also how soon can a surgery can done.
Hi Cynthia
I have asked QY (the author of this blog) to send you my email and phone number. Please drop me a line or give me a call. I’d be happy to talk to you or write back, if you prefer email.
In the meantime I found these sites useful:
http://www.cleftline.org/
http://www.acpa-cpf.org/
http://www.aboutfaceinternational.org/
One piece of advice which I will give you now, is not to do what you are already doing. The internet is wonderful (you find blogs like this), but it can also give you things which are not accurate and scary… Try not to worry too much (useless advice, I know), and please do contact me.
Hi Cynthia
I hope that QY has given you my contact details by now. Please do call or email
Cynthia, I’m terribly sorry to hear about your situation. I notified Jesta about this and he’ll be glad to answer your queries. Will contact you by e-mail to connect you guys. All the best to you, and keep your hopes up!
(Sorry, Jesta’s responses got caught by my spam filter so they didn’t appear before today.)
In case any other parents drop by… Please contact Sheylara and she will pass you my contact details for a more personal response.
I’m going to add one more comment to this page: In searching the Internet through Google for information about cleft lip and palate in Singapore I came across a whole bunch of sites, some of which were just wrong. Worse they were published under the names of Doctors and Dentists.
So… Please, if you are a parent expecting a child with a cleft lip and palate, contact KK Hospital and ask for the Cleft and Craniofacial Centre. They will be able to provide you with the right information.
I’m so sorry Jesta.I really wish the best for your daughter
I was just wanting to post this to anyone who has a child with cleft lip or palate. Before your child has surgery, take time to this about your post opertative care. My son had just a cleft lip so he had just one surgery. However the thought of having his arms in stints made me sick. I knew it wouldn’t be good for him. And I imagined it to be harder than the doctors make it seem. I decided to be creative and think of ways around the normal 3 months of arms straight out! I went the animal clinic by my house, I purchased a “lamp shade” medium size for a small dog. I went home trimed it up cut a slit on the side and sewed a slip cover for it out of a sweet little boy flannel. with ties on the side. During the day while he was awake I put it around his neck. Always with my undivided attention, and took the stints off. He loved this!! so did I! I could bend his arms and even cuddle with him! He loved the freedom of moving his arms all around! My doctor told me I should patten the idea! I figured people might think I was crazy! I recently told a mother about this and she was in tears she was so excited to go by one and make her own. Hope this could be of help to anyone reading! As long as they’re hands can’t touch their face the width of the plastic is long enough! And I made a VERY basic slip cover as I am not a seamstress! I only needed one because while he slept in his arm stints- I’d through it in the wash
Hi Missy
The post-operative care is tough. Thanks for the info about the way around the splints.
I’m not sure why you were told that you had to have the splints for 3 months. My daughter had her stitches out of her lip in under 2 weeks and we could take the splints off then.
After her palate surgery she needs to have the splints for 4 weeks or more, but it’s not too bad.
It sounds like your idea is a really good one, though. Have you had contact with the Cleft Centre at KKH? If not could we share your idea with them?
Please email me – justynoATgmail.com (the AT should be @)
Hi Jesta,
do you mind to email me the cost by KK hospital? I am helping my fre to us (from Malaysia)
Thank you so much
Hi Meisan
I think that Sheylara let me know about your question, I think that I replied to her, but please let me know if I missed anything. Costs are not the same for everyone, so I am not the best person to answer, but I will do my best.