You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Jacob's Cleft Report
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The following is a Health Report that was written by Jacob Green when he was in the 8th grade (10/13/00). Jacob was born with a cleft lip and palate, as were both is brother and his sister. His mother, Joanne Green, is the founding director of Wide Smiles.
Cleft Lip and Palate:
A Birth Defect
By Jacob Green
(cover picture – a pic of Jacob as a baby and a pic of Jacob in the 8th grade)
Cleft Lip and Palate: A Birth Defect
The report you are about to read is about a birth defect that has affected many people all over the world, including myself, called Cleft Lip and Palate. The report will include most types of cleft lip and/or palate, how it affects people, and what is done to repair it. My mom is the founding director of an organization called Wide Smiles. Wide Smiles helps many thousands of people with their website at http://www.widesmiles.org (where I am also a webmaster of the “Wide Smiles Kidz Club.” The WS Kidz Club just helps other kids with cleft lip and palate to know that there are many more kids like them who deal with clefts.
(Graphic included, showing different types of cleft lips and cleft palates)
Cleft Lip and Palate: a Birth Defect
A cleft lip and palate is a birth defect that happens when the tissue that forms the lip and/or the palate fails to grow together before you are born. I know a lot about cleft lip and palate because I was born with a cleft, and so were my brother and my sister. Also, my mom started Wide Smiles, and so she helps many thousands of families all over the world who have babies with cleft lip and palate.
A cleft lip and palate is not an uncommon birth defect. It happens in one out of every 700 births. It happens more often among Asians and less often among Africans, but it can happen to anyone in any race. It is the fourth most common birth defect in the world, and it is the first most common facial birth defect.
The Causes of Clefting
A cleft happens long before a baby is born. It happens in the fourth to the eighth week of pregnancy. Cleft is considered to be a “multifactorial” birth defect. That means that a cleft is both genetically and environmentally caused.
There is no actual “cleft gene” that you can look for to see if a baby is going to have a cleft. However, there are a lot of different genes that seem to have something to do with a cleft. About 10% of the babies born with a cleft have another genetic syndrome. That is called a syndromic cleft. If there is no syndrome, it is called a nonsyndromic cleft, or an isolated cleft. Most clefts are isolated.
Environmental factors are anything that affects the baby that comes from outside the baby’s genes. If a mother does not eat enough folic acid, or if she eats too much animal resource vitamin A, she could have a baby with a cleft. Smoking or second hand smoke can lead to a cleft. Other environmental factors include over the counter liquid cold medicines, epilepsy medicine, air pollution, poor pre-natal nutrition, hormone therapy medicines, drugs, alcohol, and many other things. Most of the time, though, the cause of a baby’s cleft is not even known.
Types of cleft lip and palate:
There are many ways that a cleft can be classified. It can be a cleft of the lip, a cleft of the palate, a unilateral cleft, a bilateral cleft, a complete cleft, an incomplete cleft, or any combination of the above.
A Cleft is a unilateral cleft lip when the tissues on one side of the lip did not fuse. (I was born with a unilateral complete cleft lip and palate.)
(insert, picture of Jacob as a baby, prior to first surgery.)
A cleft is a bilateral cleft lip when the tissues on both sides of the lip did not fuse. When there is a bilateral cleft lip, the premaxilla and the middle of the lip usually flip up and “float”. (Joey had a bilateral cleft lip and palate.)
(insert picture of Joey as a baby, prior to first surgery.)
A palate can be unilateral or bilateral cleft too. If it is a unilateral cleft palate, it means that the palate did not attach to the vomer bone on one side. If it is a bilateral cleft, it means that the palate did not attach to the vomer bone on both sides.
A cleft lip is a complete cleft if it goes through the lip, and through the base of the nostril, and through the gums up to the incisive foramen (where the gums curve and become the palate). A cleft palate is complete if it splits the hard palate, the soft palate, and even the uvula.
Problems of cleft lip and palate:
There are many problems that happen when a baby is born with a cleft lip and palate. Right away, the first problem is how to feed the baby. Babies who have a cleft palate cannot suck well enough to eat. There are special bottles that can be used to feed a baby with a cleft. Those bottles are sometimes hard to find.
Another problem that can start right away with a baby who has a cleft is problems with the ears. The Eustachian tubes of a cleft-affected baby do not work right, and so the baby has a lot of ear infections. Those ear infections, or many sets of tubes, can lead to hearing problems, which is another problem that a cleft child can have.
Children who have cleft palates can also have speech problems. Most children with clefts get many years of speech therapy to correct nasal speech and articulation errors. I took speech for seven years. My brother took speech for five years. Most kids with cleft take speech for many more years than that.
Another problem for kids who have clefts is dental problems. Teeth can be messed up when you have a cleft. A cleft can make your teeth missing, or crooked, or twisted, or extra, or in the wrong places. They can also be poorly enameled, which leads to decay.
A child with a cleft will also have to have a lot of operations. They can have as few as three, or as many as twenty or more as they grow up.
Finally, a problem that kids with clefts can have is that they have to decide if they want to have babies when they grow up, if they know that the babies they have might have a cleft. Having a baby with a cleft is a one out of 700 chance if there was never a cleft in your family before, but if you have a cleft, the chance goes way up to three in one hundred!
Treatment for cleft lip and palate:
A cleft cannot be cured, but it can be repaired. There will always be some sign, like a scar, that there was a cleft.
A child might have many surgeries as they grow up. The three surgeries they know they will have are a lip repair, a palate repair and a bone graft. I was lucky, cause that is all the surgeries I had. But most kids with cleft have more. A lip repair is done when the baby is around 3 months old. The palate repair is done when the baby is about 9 – 18 months old. The bone graft is done when the child is about 8 yrs old. For many k ids, there will be more. Some of the other surgeries that a child with a cleft might have include lip adhesion, lip revision, rhinoplasty, secondary palate surgery (like a pharyngeal flap), fistula repair, myringotomy with tubes, LaFort bone advancement surgery, Abbey Flap, latham device insertion, oral/dental surgery, and many others. Some of those listed can be done more than once.
Orthodontia is also an important part of the cleft palate repair. Many babies with cleft see an orthodontist even before they have teeth! The orthodontist might use devices to move the gums around before lip and palate repair.
When they are older, most kids with cleft will begin orthodontia around age 8, with a palate expander. This is to correct a collapsed palate, which is common with kids who have cleft. Full upper braces are done to bring the palatal segments together in a nice dental arch before the bone graft. Braces on the lower teeth help to keep the upper jaw from being further in than the lower jaw because of what is called scar constriction. Most kids with cleft wear braces for 7 – 10 years.
Speech therapy is also used to repair a cleft. Sometimes they even start speech therapy before the child is one year old. The speech therapist will work on oral/motor exercises, feeding issues, and early speech development. Speech therapy usually lasts through elementary school.
Living with a cleft lip and palate:
I asked other families what they thought about having a child with a cleft and dealing with cleft issues. I asked them what they thought were some of the biggest problems. Some parents said that they had to travel long distances (sometimes hundreds of miles) to get treatment. Others said that they hate to deal with insurance, like when the insurance company says they won’t pay for a surgery on a child’s cleft lip because it is “cosmetic”. Some of the parents said that their kids get teased, and that that is the hardest part.
I have not been teased about being born with a cleft, and we have done all of our surgeries here in Stockton. None of my friends think that my cleft is any kind of a problem, and they don’t even ask about it. For me, I think having a cleft is not terrible. There are a lot worse birth defects than a cleft. I don’t even think much about it. I think, though, that if I was not born with a cleft, then I might not have been adopted by my mom and dad, so in that way, my cleft brought me good luck.
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