cleft care at UK HealthCare

Talking about touch-ups

Although we’d like to only have to do one surgery on the lip and palate, realistically most kids will need a “touch up” or revision. Usually this happens between 3 and 6 years of age when children become more socialized from day care or school. This also is when kids become more self-aware and notice differences between each other.

Why do we need revisions?

There are two main goals of cleft care:

  • Creation of a normal appearance.
  • Establishing normal function.

Since our social interactions are so important to us, both appearance and speech shape who we are and how we relate to people. As children grow, their own tissue and scars change, and they essentially grow out of their initial repair. I like to refer to the revisions as touch ups  – typically outpatient surgeries that consist of a few readjustments.

I find there usually are two times in a child’s life when we need to do touch ups. The first time is usually before kindergarten or at about preschool age. This is when kids begin to notice differences between one another, and they begin to make comments. In this age group, these often are not mean or hurtful comments, but questions stemming from curiosity. Parents of children with clefts often say it’s best to address this topic directly. Let your child know that when he or she was born, “they had a boo-boo (or whatever your equivalent term is) of their lip and nose.  Doctors fixed it, and now things are good.”  Multiple parents have told me this works well. Kids at this age usually just want an explanation, and once they have it, they’ll let it go without a second thought.

The other time we consider a touch-up procedure for children is during their preteen and teenage years.  As I’m sure we all remember, these are the awkward years where what happens socially is what defines the whole world. Unfortunately, this is also the age where kids can be mean to one another. It is difficult for “tweenagers” to see past residual traces of a cleft lip or the airy sound of the cleft palate. Revisions at this stage are dependent on the child’s wishes, as well as what can be reasonably expected. With current techniques and experience-based knowledge, I would expect a child with a cleft to live a healthy and happy life without having any limitations because of cleft lip and/or palate.

Touch ups

Touch ups tend to be grouped as such:

  • The lip
  • The nose
  • Speech

The lip: As a child grows, what can happen is his or her lip grows “apart.”  The sides don’t match up, and because of the imprecise nature of scarring, what originally looked great now looks off.  Also, depending on how wide the cleft is, the muscle layer can thin and look like it has pulled apart. These changes can result in a look called a “whistler’s deformity.” There is notching of the vermilion (or otherwise known as white roll) of the lip, and perhaps some degree of asymmetry of the entire lip itself.  It looks like one could “whistle” through this area.

There is no defined timeframe to do a lip touch up, but most families and patients prefer to do this before kindergarten and then later if needed.

The nose:  The full effect of clefting can be seen as a child grows older and the nose begins to achieve adult proportions. Not only is the lip involved, but so too are the nasal septum and tip cartilages (which gives the nose tip its shape). This presents two problems. One is the ability to breathe well from one or both nostrils. The other is nose asymmetry. At this point, we begin to see how much the nose really can change the appearance of the entire face. Traditionally nose operations didn’t happen until age 16, when the child’s bone structure was more like an adult’s. However, experience shows that operating on noses earlier doesn’t pose a problem later in adulthood. Not only can we improve breathing, but we also can help improve self-image and self-esteem, too. Typically, though, we would consider doing nose work around 12 years of age. Of course, this is subjective and differs from child to child. We have to take into consideration the jaw growth, level of breathing impairment, social pressure and the maturity of the child. This is why I like to take extra time to explore all of these issues and make sure we do what is right at the right time.

Speech:  As we all know, kids like to talk, and preteens talk even more! It’s at this age that our children begin to really develop their personalities and their ability to relate to others. Having poor speech becomes a barrier during this important time and can have a detrimental effect on the child. Speech is very complex because it’s affected by a number of variables, including: the ability to hear well, learned behavior, mechanical issues with the throat and palate, and the availability of resources such as speech therapy. Luckily at UK, we have a great speech pathologist, Rebecca Hancock, M.Ed., CCC-SLPwho specializes in Video Nasoendoscopy, or VNE. This procedure uses a very small camera that is guided down the nose to see the palate and throat work while the patient speaks. This helps us figure out whether it is a mechanical issue with the palate and throat, or whether more therapy is required.  Rebecca is vital in providing information for a clinical decision.

If we decide that the throat and palate are not working properly, there are two procedures available, depending on what is wrong. One is called a pharyngeal flap and the other is called a sphincterplasty. These will be covered in a future blog post.

As you can see, there are many decisions to make during a child’s transition into young adulthood.  These can be especially challenging times, as the child begins to develop his or her personality and self-identity. Although we know our kids are more than their appearance, it can be very hard for them to see that. I’m here to help coordinate and make sure everything is evaluated and treated accordingly. It’s my goal to address these issues, and then take care of them in the best way possible.      –   James Liau, MD

cleft care at UK HealthCare

Comment from a grateful parent

Thank you!

I will never forget the day doctors at UK told me that my baby had a cleft lip and possibly a cleft palate as well, I proceeded into the restroom to dress after the ultrasound and I dropped to my knees in that very restroom and asked GOD to just lay his hand on my baby and help me through the long road ahead and he did just that by sending a very passionate, caring and loving doctor to us and I would like to thank Dr. Liau for taking time out of his busy schedule to make my son whole again and I would recommend him to anyone. He has a special love for his work when it comes to children and thank you, thank you and thank you again Dr. Liau for everything you did for my son.  ….Sherry F.

We’d love to hear from you.  Send us your comments or questions.