Cleft Lip and Palate -- some facts + what's ahead for Madelyn

(Sorry, no updates yet on a travel date. Tricia and I received our visas for travel, but we are still waiting for Madelyn to receive her visa. People are likely preparing for Chinese New Year, which starts on the 14th and means the country all but shuts down for a few weeks. We are incredibly anxious to get an update and I'll post it IMMEDIATELY here and everywhere once we do.)

About a year ago I posted some facts about cleft lip and palate and discussed the likely surgeries that Madelyn would be going through once she came home. Since many are new to the site since then, I thought I'd update and repost the information.

First off, a family we met at one of our adoption classes went to China around two months ago and brought home their new daughter, Meili. She had cleft lip and palate as well and just a few weeks ago went to Doernbecher Childrens Hospital to have the first of her surgeries done. Quite frankly, it's absolutely amazing at what they are able to do with this surgery, as you can see in the following posts of before/after and then one week after surgery:

(Warning -- music plays when you open these links, so mute your speakers if necessary)

Before and After
One Week Later

Pretty awesome, huh.

Alright, so let's go over the facts of cleft lip and palate first and then we can discuss the likely timeline of procedures once Madelyn is home.

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.

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).

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.

One of the main challenges with cleft lip and cleft palate is feeding problems for the infant. This is easily remedied with a special feeding nipple for the bottle -- we have been giving one called a Haberman Feeder -- which allows the feeder to control the flow of liquid to the baby and also allows the baby to only suck as much as they are capable of (and not waste too much energy in the process).

The other major challenge is speech and development delays, especially in older children who haven't had surgery. 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, Madelyn is going to need orthodontia repair and speech therapy. Tricia and I should be able to offer up some support from experience there, as Tricia had braces and I had to do speech therapy (awe-thum).

As for the surgery itself, as those pictures above show (and others, showing the result of the surgery years down the road attest too as well), the doctors have become amazingly proficient in this area. There are several different surgical methods available, and I'm not yet clear on the method that the craniofacial/cleft team at Doernbecher does, but I'll be sure to find out. 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.

We know that Madelyn has both cleft lip and palate, but due to the lack of detailed medical information, we don't know how serious the cleft palate is (the cleft lip is obvious in pictures and isn't much of an issue beyond cosmetic reasons).

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 unlikely that a child in a Chinese orphanage will have had the surgery done at that point. It's looking like we will arrive in China when Madelyn is just over a year-old, so she shouldn't be too far behind schedule in getting the cleft lip fixed (the cleft palate timeframe should work out just fine).

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.

Before Madelyn gets home, we are going to pick a doctor for her at Doernbecher and once we have a travel date, we'll setup an appointment for a couple of weeks after she's here. At that time, she gets to run the gauntlet of their Cleft Lip/Palate team, getting diagnostic tests from each of six specialists in what will likely be a very long day for her. Then, about a month after that, the first surgery will take place. We both feel sad for her already, having to go through all these changes so soon, but are quite confident she'll be resilient through it all (and hopefully the same can be said for Tricia and myself!).

In addition to the blogposts from above, there are some other blogs I've found of parents who have adopted children with cleft lip and palate from China where you can see the progress that their children have made throughout the process.  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.

Labels: Cleft lip and palate, madelyn, Surgery