Cleft Lip and Palate
Over the next few weeks I'm going to try to provide some basic information about the medical conditions we chose for the Child of Promise program.
Let's start with taking a look at cleft lip and palate.
Here is a simple to understand description of both cleft lip and palate, via Wikipedia:
The main challenges with cleft lip and cleft palate are feeding problems for infants (easily remedied with a special feeding nipple for the bottle) and speech/development delays in older children. Cleft children also have more frequent ear infections (the Eustachian Tubes are usually affected by the cleft and do not drain the fluid from the middle ear properly) and a higher incidence of dental cavities. Thus, it's more than likely that even after surgery, the child will need orthodontia repair and speech therapy.
Fortunately, surgery has become quite proficient in this area. There are several different surgeries available, although I'm not clear on the chosen surgery that the craniofacial/cleft team at Dornbecker/OHSU or Emmanuel does (those will more than likely be the hospitals where the surgeries would take place for us). A typical surgical procedure, as described at www.widesmiles.org:
Sadly, there seems to be too many stories of children in these orphanages who are not adopted until they are 2 years or older and all the while they are not getting the surgery they need to aid in their development. I should point out that this is becoming less of an issue as many of the adoption agencies and non-profit medical groups are doing a good job of getting money and resources to the orphanages so that the cleft surgeries can be performed on the children who are in these situations.
My absolute favorite part in doing the research that went into this was being able to see some of the blogs of parents who have adopted children with cleft lip and palate from China and seeing the progress that their children have made throughout the process. It definitely helped in our decision making to read how other parents handled the entire process of adoption and surgeries (and the kids are all super-cute, to boot). You can read about Nora on oursprout.blogspot.com and Eliana at chinastork.blogspot.com.
Let's start with taking a look at cleft lip and palate.
Here is a simple to understand description of both cleft lip and palate, via Wikipedia:
Cleft lip (cheiloschisis) and cleft palate (palatoschisis), which can also occur together as cleft lip and palate are variations of a type of clefting congenital deformity caused by abnormal facial development during gestation.In our case, we have said we are open to a unilateral and incomplete cleft lip, thus it will not go all the way to the nose. Cleft palate has no such differentiation. Research I've seen shows that about 50% of the time, cleft lip and palate both occur in the child, and the other 50% is split evenly between either cleft lip or cleft palate, on their own. While the cause of the clefting is typically genetic in nature, recent research has attributed the high rate of cleft, amongst other birth defects, (4 to 6 percent of all children born in China have some form of birth defect) on the extreme pollution in China.
A cleft is a sub-division in the body's natural structure, regularly formed before birth. A cleft lip or palate can be successfully treated with surgery soon after birth. Cleft lips or palates occur in somewhere between one in 600-800 births.
Cleft lip is formed in the top of the lip as either a small gap or an indentation in the lip (partial or incomplete cleft) or continues into the nose (complete cleft). Lip cleft can occur as one sided (unilateral) or two sided (bilateral). It is due to the failure of fusion of the maxillary and medial nasal processes.
Cleft palate is a condition in which the two plates of the skull that form the hard palate (roof of the mouth) are not completely joined. The soft palate is in these cases cleft as well. In most cases, cleft lip is also present. Cleft palate occurs in about one in 700 live births worldwide.
Palate cleft can occur as complete (soft and hard palate, possibly including a gap in the jaw) or incomplete (a 'hole' in the roof of the mouth, usually as a cleft soft palate).
The main challenges with cleft lip and cleft palate are feeding problems for infants (easily remedied with a special feeding nipple for the bottle) and speech/development delays in older children. Cleft children also have more frequent ear infections (the Eustachian Tubes are usually affected by the cleft and do not drain the fluid from the middle ear properly) and a higher incidence of dental cavities. Thus, it's more than likely that even after surgery, the child will need orthodontia repair and speech therapy.
Fortunately, surgery has become quite proficient in this area. There are several different surgeries available, although I'm not clear on the chosen surgery that the craniofacial/cleft team at Dornbecker/OHSU or Emmanuel does (those will more than likely be the hospitals where the surgeries would take place for us). A typical surgical procedure, as described at www.widesmiles.org:
The timing for repair varies with the doctor and with the child. However, most of the time a cleft lip is repaired at around 10 weeks of age, if the baby weighs at least 10 pounds at that time. The cleft in the palate is repaired at about age 9 - 12 months. There will likely be a bone graft at around age 9. There is no guarantee that those will be the only surgeries your child will have to repair the cleft. Many cleft-affected children have revision work done as they grow. Rhinoplasty is also common. There may or may not be some speech-related surgeries or palate-lengthening surgery. Your plastic surgeon can give you a better idea as to what you might expect for your child. Just remember that it IS repairable, and that each surgery will only improve upon what is already there.Now, as stated above, in a typical situation, the first surgery on the cleft lip would occur when the child is 10-weeks old. However, it is not always a given that a child in a Chinese orphanage will have had the surgery done at that point. I haven't found the information on just what percentage of the children get the cleft surgery versus those who don't. However, assuming we arrive to pick up the child when they are near a year-old, there is a good chance that they will not be too far behind schedule in getting the cleft lip fixed (the cleft palate timeframe works out just fine in this example).
Sadly, there seems to be too many stories of children in these orphanages who are not adopted until they are 2 years or older and all the while they are not getting the surgery they need to aid in their development. I should point out that this is becoming less of an issue as many of the adoption agencies and non-profit medical groups are doing a good job of getting money and resources to the orphanages so that the cleft surgeries can be performed on the children who are in these situations.
My absolute favorite part in doing the research that went into this was being able to see some of the blogs of parents who have adopted children with cleft lip and palate from China and seeing the progress that their children have made throughout the process. It definitely helped in our decision making to read how other parents handled the entire process of adoption and surgeries (and the kids are all super-cute, to boot). You can read about Nora on oursprout.blogspot.com and Eliana at chinastork.blogspot.com.
- For a ton of information on cleft lip and palate, go to www.widesmiles.org.
- Here are some links to two pamphlets on cleft lip and palate: "The First Four Years" and "Cleft Surgery".
- And, just for fun, some famous people born with a cleft include King Tut, Doc Holliday, Stacy Keach, Cheech Marin, Tom Brokaw, and Joaquin Phoenix.
