child. You've got hearing complications. Clefts will often affect what's called the Eustachian tube which regulates the fluid in and out of the middle ear.So what happens a lot of times is these kids will get a buildup of fluid in their ear which if it isn't drained can become infected and if that infection isn't addressed it can lead
Is that right? Well, for many diseases, you can actually identify the disease to a specific chromosome, even to a specific gene. With clefting , we have many different genes that are involved. And we're still actually discovering some potential genes that have some influence over the creation of this deformity.
So that in a nutshell, I want to provide just a little bit of background for some you might be unfamiliar on the cause of cleft repair which is primarily what this charity does. So clefts or orofacial clefts are a birth defect in which there is an opening in the lip or the pallet, the roof of the mouth which is caused by incomplete development during fetal formation.
So now we know today that nutrition plays a role. And he had a cleft from the very beginning.
But what really spoke to me was the work that they were doing. The cause of cleft repair which is not something I knew a lot about. And so I wanted to take a couple minutes to go over some of the complications associated with clefts and talk a little bit about what it is these kids have to live with every day.
And so a lot of times burn victims just aren't a very sexy cause and so not a lot of charities address that and help burn victims. It's not like clefts where all of the sudden the kid has a new face and can smile afterwards and everybody gets that warm and fuzzy. Burn victims, it's not always so glorious but it's no less important.
So we would flyer the country in advance of the ship's arrival, and a small advance team would say, hey, look, if you have a facial tumor or if you have flesh-eating disease, if you were born with a cleft lip or a cleft palate or you were burned during the war, maybe, and you need facial reconstruction; turn up, and our doctors will try to see you.
But Ma'loula is of no strategic interest to anybody. It's tucked into a little cleft down in the mountains. It doesn't command anything at all.
If the trauma or adversity involved another person who was untrustworthy that we trusted, it calls into question our ability to evaluate people and decide who So you looked at the cleft chin, and you inferred other qualities about it.
So one of the earliest things to occur for a baby with a cleft are difficulties feeding. So if a child has a cleft lip, they often can't perform a proper seal around the bottle or around the nipple. And so as a result they're deprived of all sorts of nutrients that they need to grow and they end up losing all sorts of weight when they should be gaining weight as a developing
In this slide is a three-year-old Chinese girl who was actually adopted by a family in the states. When they adopted her she had a cleft which they had repaired which is great. But she also had two permanently ruptured eardrums from a dual ear infection that had persisted for two years without treatment.
And kids have speech impediments as a result of that. And also if child with a cleft has experienced hearing loss, they often can't hear the sound their own mouths are making and have difficulty speaking as a result of that as well. And then lastly, and this is hands down the complications that spoke to me the most.
And I look completely different. I didn't have a beard and I have a cleft lip for one of the twins. People would reintroduce themselves to me.
But nothing could have ever prepared them to see what they saw in the small town of Naga City, where they were supposed to operate on about 50 children who were born with cleft lips and palates. 300 of them came, and their families.
So now we know today that nutrition plays a role. When you take care of a kid with a cleft lip or a palate, they can actually go home by the next day.
If the trauma or adversity involved another person who was untrustworthy that we trusted, it calls into question our ability to evaluate people and decide who OK. Cleft chin, right?
As far as a cause, there is still no definitive cause that has been outlined by researchers but there are a number of factors believed to lead to the formation of clefts . So you got syndromic factors meaning that the cleft occurs as part of a syndrome. So in this slide you'll see two kids with what's called stickler syndrome which is a syndrome that attacks the connective tissue in the body, mainly collagen.
Emphasis on quality versus quantity. Some of you who might be more familiar with clefts may have heard a cleft surgery is advertised as only taking 45 minutes of a surgeon's time. While it is possible in some cases to perform a surgery that quickly the results are often sub optimal.
do? Do you have another journey in mind >>Winston: Okay so how does the charity spend I did not see a child with a cleft until Hanoi Vietnam.
do? Do you have another journey in mind >>Winston: Okay so how does the charity spend Female # 1: You said that there are more kids with cleft palates in Southeast Asia and there are in other areas.
And then lastly, and this is hands down the complications that spoke to me the most. And those are all of the social complications associated with clefts . It can be hard enough for kids without a facial deformity to make friends growing up, at school or on the playground.
do? Do you have another journey in mind >>Winston: Okay so how does the charity spend I've seen a couple who had had clefts that you could see there was some scarring so they had clefts that have been repaired which is great.
We see this coming up in politics, where people downplay how confident people are, how competent they are at doing their jobs. So it could be a physical thing, like cleft palate for example, where the articulaters are not fully formed.
So now we know today that nutrition plays a role. So I must say that the procedure of taking care of a child with a cleft lip is as short as 45 minutes.
So now we know today that nutrition plays a role. So our co-founder always says, kids with cleft lips and palates actually give us a chance to learn through them about the needs of their communities.
But in the strict sense, in the observer-independent sense in which you and I have intelligence, there is zero intelligence in the computer. But we don't know if you mess around in the synaptic cleft , you're going to get weird effects.
And so I wanted to take a couple minutes to go over some of the complications associated with clefts and talk a little bit about what it is these kids have to live with every day. So one of the earliest things to occur for a baby with a cleft are difficulties feeding. So if a child has a cleft lip, they often can't perform a proper seal around the bottle or around the nipple.
able to be successful. This was a three-year-old Chinese girl who suffered from a very rare cleft called tessier number four bilateral orbital ocular cleft . The problem in her case was similar to the Pakistani man where there just weren't any doctors in the area who had experience with this particular cleft because it is so rare
do? Do you have another journey in mind >>Winston: Okay so how does the charity spend And also believe it or not they're actually slightly more occurrences of cleft births in this region than other parts of the world for whatever reason.
But she also had two permanently ruptured eardrums from a dual ear infection that had persisted for two years without treatment. And then you've got speaking complications, obviously clefts affect the mouth and can lead to all sorts of dental deformities. And kids have speech impediments as a result of that.
And that's a sense of-- gives me a great sense of joy and pride. Now, when you see the pictures of children with cleft lips and this gap in the mouth, you might think, well, if you fix the deformity, that's it, right? These kids actually have had to endure bullying, making fun-- be made fun of, being ostracized.
So here's Kirk Douglas in 1958 in "The Vikings". And I think the only reason he doesn't have a beard is because he has that cleft chin and he always had to show that off. He does have that glass eye that is just totally weird.
They come in a whole set of, range of shapes and sizes as you can see. Ranging from some more milder occurrences to more extreme occurrence in the last one there where a cleft just in the soft pallet to a cleft occurring both in the soft and hard pallet and then bilaterally on the lips there which is bad news.
So in this slide you'll see two kids with what's called stickler syndrome which is a syndrome that attacks the connective tissue in the body, mainly collagen. And so as a result of this syndrome children are more likely to be born with clefts . You've got genetic factors, so there are a number of genes that have been identified by researchers that are believed to lead to the formation of clefts .
The cause of cleft repair which is not something I knew a lot about. And so I wanted to take a couple minutes to go over some of the complications associated with clefts and talk a little bit about what it is these kids have to live with every day. So one of the earliest things to occur for a baby with a cleft are difficulties feeding.
But Alfred saw beyond their beauty to the microscopic holes in their exoskeletons. He would set up these huge boulders, basically, and put a stick of dynamite in there and watch as they like cleft in two.
And I'm blasting my club list of about 15,000 emails. Back then, open rates were almost 100%, so like it or not, you went from getting invited to the Prada party to images of leprosy and tumors and cleft lips. And of course, a few people unsubscribed.
So my colleague and friend, Chris Bryant, and I are here to talk about Operation Smile. And as you've seen in the video and the picture, we take care of children who are born with a facial deformity called cleft lip and cleft palate. And these kids are coming to the world.
So when the mumps are the earliest parts of pregnancy, anything that might impact that beautiful process of cells coming together and organs being formed could potentially impact the process in itself, and end up in a cleft . So we're still trying to figure out not only all the genes, but also the interactions between those genes and the environment.
So we're very excited that he is visiting Taiwan. And his chief purpose is going to each place to raise money for a children's charity, with cleft pallet. And that's very impressive.
And then on June 1st I'll be headed down to Kaichung. So that in a nutshell, I want to provide just a little bit of background for some you might be unfamiliar on the cause of cleft repair which is primarily what this charity does. So clefts or orofacial clefts are a birth defect in which there is an opening in the
lip or the pallet, the roof of the mouth which is caused by incomplete development during fetal formation. So it's actually one of the most common birth defects worldwide, one or two out of every thousand kids is born with a cleft . The good news is it can be treated and most kids can undergo surgery within their first 18 months, which is good.
So things such as the mother smoking during pregnancy, use and abuse of illicit drugs, nutritional deficiencies are a big one, what the mother is eating or not getting while she's pregnant. Exposure to certain pesticides, these environmental factors are believed to lead to the formation of cleft . They come in a whole set of, range of shapes and sizes as you can see.
So how did I get this idea? How did I get the idea to walk 5000 miles through a part of the world I'd never been to before to raise money for the small cleft charity? It actually all started in Senegal in 2007, summer of 2007.
turn these kids' lives around which really appealed to me. So I want to talk a little bit about this charity in particular because it's something you may know, there are actually several charities that tackle this work of cleft repair. A lot of big names out there.
This was a three-year-old Chinese girl who suffered from a very rare cleft called tessier number four bilateral orbital ocular cleft . The problem in her case was similar to the Pakistani man where there just weren't any doctors in the area who had experience with this particular cleft because it is so rare and because it is such a lengthy surgery.
do? Do you have another journey in mind >>Winston: Okay so how does the charity spend And that was because I was visiting a local charity there, a Vietnamese medical organization that provides cleft surgeries for local Vietnamese kids.
And we've operated on boats, we've operated on planes, we have operated in classrooms. This is actually a project that we had where we actually had to respond, and we were able to respond to some of the victims in Haiti outside of the clefts . We've operated on tents.
The good news is it can be treated and most kids can undergo surgery within their first 18 months, which is good. As far as a cause, there is still no definitive cause that has been outlined by researchers but there are a number of factors believed to lead to the formation of clefts . So you got syndromic factors meaning that the cleft occurs as part of a syndrome.
And so as a result of this syndrome children are more likely to be born with clefts . You've got genetic factors, so there are a number of genes that have been identified by researchers that are believed to lead to the formation of clefts . And then you've got a whole host of environmental factors.