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Living With Cleft Lip & Palate
2015-06-08
I was born with a cleft lip and palate.

If any Chinese don't know what that is, fear not. It is a minor birth defect that I had repaired when I was a small infant. A gap between the lips and roof of the mouth, approximately 1 in 1,200 babies are born with it in the developed world. Statistics are actually higher among Asian and African babies.

While this minor birth defect has not affected my life so much, I am writing to you now because my wife and I just found out that our 2nd child (whom she is currently 7 months pregnant with) has a unilateral cleft and probable palate.

My life in China has officially come full circle.

Now, I have lived in China for almost 12 years, and know the "ins and outs" of this country perhaps better than any foreigner I've ever met here, but still, my first reaction was, "No! Please! Not in China!"

Having been born with a cleft, I must say that I have, at times, lacked certain confidence in my life. But that lack of confidence was built up by my father who challenged me in every road of my life: to study at universities in 3 countries; to not be afraid to kiss a girl; to learn how to look people in the eye; and how to travel the world by myself as a young man, and live in it as an adult.

Coming from a country such as Canada with Universal Healthcare, and a mother who worked at Sick Kids Hospital in Toronto for 20 years, I was given the best treatment possible as a young child with a cleft lip and palate.

Now that my wife and I both have good jobs and are settled in Beijing, my biggest worry was, not the cleft itself, but how well my newborn son will be treated and taken care of in China.

It was not long after we learned from his 4D Ultrasound in Beijing, and he indeed had a cleft, that we discovered Wong Faye's Smile Angel Foundation in Beijing.

While the hospital that my wife is currently going to for the birth is one issue, the fact that there is a Cleft Center in Beijing with a team that specializes in repairs brought an overwhelming wave of relief to my wife and I.

The specialist who we met, from Taiwan, was even educated in Toronto and met the doctor who repaired my own cleft way back in the 70s. He knew of the Latham Appliance (medical terminology), and has done repairs all over the world with nothing but worldwide renowned and expertise. He flies in to Beijing every 2-3 months specifically for cleft lip and palate repairs.

While that has been a Godsend, we have experienced some Taboos about clefts from the hospital my wife is giving birth in. Questions from OBGYN's such as, "You have to make a decision" and "This is your choice if you want to keep it" are unheard of in the West, and actually sickening for me to hear. It has been hard at times for me to let such doctors say such crap to my wife to her face, when the father of the child has a cleft himself.

Again, for a doctor to say such a thing to a 7-month pregnant woman in the West is absolutely unheard of. I questioned myself, "What am I doing here?" "Is China really this backward? In Beijing?" And then I thought about it and calmed down. This is a country that had a 1-child policy ingrained in their conscience for so many years, I guess that kind of thinking was normal. "But my kid isn't Chinese? This is a Canadian baby! And my wife's a Canadian permanent resident! How dare they say such a thing to her!"

Whereas Taiwan has become a first class leading center all over the world for cleft repairs, doctors in the mainland apparently still ask mothers to abort. Sadly, the mainland still has a long way to go when it comes to these kinds of issues. I even wondered, if I was born in China with a cleft in 1978, would I even be here today? I honestly don't know.

Yeah, a lot of soul-searching going on.

So, what does one do? He goes to the source himself: his mother.

When I Skyped with my own mother back in Canada, she was overwhelmed that we had found such a doctor in Beijing who could perform the repair in China, but also understood my anger and questioning, and everything else surrounding my new baby. After talking with her, and feeling much better, I realized that truly, like I said, it's not the cleft itself, it was the worry of having a baby in China without any idea of the system or specialists, etc. And, we found the doctor! So everything as of now is a huge relief!

So, for now, I thank Wong Faye, whose daughter was also born with a cleft. If anything, it is a minor repair that is treated after three months, and the palate at one year. It is not a disease or a disability. I actually met her ex-husband at the clinic and spoke to him and was reassured that they are doing great things.

The last thing the doctor from Taiwan said was, "Don't worry! Your son will look better than you!"
An insult compliment if I've ever heard one, but probably apt: I do have a 70s job, and my son will get the 21st century, state of the art, surgical repair.

If anything though, it's really given my life meaning! I've also started volunteering at Smile Angel and will continue to do so once my 2nd son is born.

Perhaps the reason I am writing to you dear readers, is to educate you that such minor birth defects are not a big deal, and that such a child can be born, have it repaired, learn and grow, and have a girlfriend, and go to universities around the world, and pretty much live as normal a life as anybody else.

Truly, we are blessed, and will no doubt feel the joy again of seeing another baby boy born, only to raise him and become his own man in the world.

12 years in this country, and even at my most frightful and personal moments, I still have so much faith living here, and raising my family of soon to be 4.

God Bless Wong Faye and the Smile Angel Foundation.




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