Considering cleft

As promised, I intend to write several times in November, National Adoption Month, about Ruth’s medical conditions.

Today I am starting with her cleft lip and palate. Ruth was born with a unilateral (meaning one side) right, cleft lip and palate.

Ruthie at 7 months old

 Cleft lip and palate is the most common birth defect, occurring approximately 1 in every 700 live births. If you are on Instagram I encourage you to search the hashtag #1in700 to see many beautiful people from around the world, and read their cleft stories.

Not all clefts are created equally. Clefts can occur as just the lip or just the palate or together. They can vary widely in severity. They can affect the gumline, but do not always. Children can have missing teeth, malformed teeth, and be prone to cavities. Some children have hearing difficulties or multiple ear infections which are frequently solved by putting tubes in their ears. Feeding difficulties are also common. Occasionally clefts occur in conjunction with another birth defect. 

What should you expect when adopting a child with cleft lip and palate? From our personal experience I would first of all say, joy! Second, a strong spirit of determination and will. From a medical standpoint I would prepare for multiple surgeries throughout your child’s life. 

When adopting from China it is very common that your child will have had at least one lip surgery before you bring her home. Depending on the success of the surgery and the severity of the cleft, your child may need revision surgeries as she gets older. Sometimes the nostril collapses after a lip repair so that will again be something addressed by a plastic surgeon. The soft tissue of the palate can generally be repaired with one surgery. If any fistulas develop post-op your child will need to undergo the palate surgery again. If the cleft goes through the gumline, your child will need to have a bone graft. This typically takes place when your child is school aged. Basically you can anticipate at least two surgeries, but very likely it will be more than that, plus orthodontics. 

If your child has cleft palate, you can anticipate years of speech therapy. I met someone recently while at the Lancaster Cleft Palate Clinic who was adopted at age 3 from China. She is now a lovely 8th grader and this is the first year she has not needed speech therapy. I joked recently that I will gladly endure 12 years of speech therapy since Ruthie potty trained so quickly and easily.

When I have it typed out like this it seems like a lot, but keep in mind all these things are spaced out over the years of their childhood. It is helpful to have a cleft clinic nearby. After surgery, most children will only need to see the cleft specialist once a year. 

At this point, I would say that Ruthie’s cleft lip and palate are not a big deal. Like many children with medical conditions, she is strong and determined. While she may at some point be self-conscious of her scar, we intend to fill her so full of confidence and self-respect that it is not an issue. 

Close up of Ruth’s scar. 

We love our Ruthie! The next post will share more specifically about Ruth’s cleft.