Friday, May 23, 2014

"Cleft Lip and Palate? Oh, they can fix that."

Throughout our adoption wait, and especially when we received our referral, many well meaning people in our life would say this...."Cleft Lip and Palate?  Oh, they can fix that."  While I know most people meant well, there was and is a lot of ignorance that went into that phrase.  What I would normally say was something polite like:

"Yes, it's incredible what they can do surgically now for these children." 

But here is what I really want to say, now that I am a mama to a cleft child:

"Yes, they can fix the large gaping hole that is so evident in their beautiful faces but just so you know:
  • The average cleft child will endure seven surgeries to create just the right aesthetic and functional mouth they can possibly have by the time they have fully matured.
  • If they are lucky enough to still have an intact eardrum after all the ear infections they had while institutionalized, nearly all cleft children will need PE tubes.  Should they not have them put in, then 25% of cleft children will develop a growth around their eardrum that must be surgically removed.  Let's also talk about what all this does to their hearing, resulting in further  delays in mastering expressive speech and sometimes requiring them to get hearing aids.
  • Did you know that many institutionalized cleft children are malnourished?  They have difficulty getting the oral mechanics needed for sucking to get good nutrition.  Imagine what this does for early brain development and cognition. 
  • So, what about the teeth?  They are at greater risk for cavities. Their teeth often have small, weak or defective areas in the enamel that are more prone to decay. Their saliva can be thicker, which reduces its natural washing action in the mouth. Their teeth can be crowded, which can make it hard to brush well. These children also have a high risk of some tooth irregularities such as missing or extra teeth, abnormally shaped teeth or teeth in unusual positions. Most of us are told to (at the minimum) expect orthodontic work, but some children at around 6-10 years of age will need to prepare for bone graft surgery.  The cleft of the tooth-bearing part of the jaw needs to be repaired with an alveolar bone graft if this had not been done at an earlier age.  To prepare for this bone-graft surgery, it's often necessary to put the tooth-bearing segments in better position in relation to each other so the jaw has a more normal shape. The front teeth in the upper jaw may need to be aligned if they are irregular. Oh, and by the way, children with a cleft are also at risk of having less growth of the maxilla (upper jaw) than of the mandible (lower jaw). If this growth difference is large, the child might develop an under bite. An under bite at an early age may need further orthodontic treatment.
  • Now, let's talk about what looking different and sounding different might do to a child's self esteem.  Even one of the most popular cleft lip and palate foundations has resources on their website for anti-bullying strategies.  Surgery might help our children's faces look more symmetrical, but never will all evidence be removed that they were born different.  Many of our children will struggle with low self-esteem and figuring out how to navigate in a world where they look different. 
  • For our family, almost 16 months after out first major cleft lip and palate repair, our son is still not able to chew solid foods.  Almost a year after initiating Physical therapy to assist in the motor aspect of chewing, I am still pureeing almost all of my child's food, seeing no evidence that he will begin chewing anytime soon.  Many cleft children have difficulties with food.  If not chewing than difficulties with consistency and textures.  Many have to learn how to keep their food away from fistulas in their oral cavity so food doesn't escape into the nasal canal. 
  • Speaking of fistulas, did you know there are some families whose cleft children have had four surgeries to try to "plug" a fistula in the mouth without success?  Any fistula in the mouth is an area where precious airflow can escape which will then negatively affect speech output. 
  • Can I just tell you about the debate that still exists on surgeries?  Some have potential side effects of sleep apnea and difficulty breathing.
  • And no one tells you, in this "they can fix that" society, that there will be days where you open up the photo books and see pictures of "before the surgery", and wish that you could go back and spend one more day with that cleft baby.  (You see, many cleft Moms see their unrepaired children as perfect just the way they are.  To indicate to a Mother that "they can fix that" feels a little like they aren't acceptable until that is done.  We know that they are.)
So, yes, it can be fixed, but it is a journey of a cleft child's entire youth; until they are fully matured.  We will wax and wane between periods of surgeries, recoveries, and lots and lots of therapy in between.  It is not a quick fix nor a "one and done surgery."  It is the journey of a family united, working through the long haul to achieve the best possible functional outcome.  To say, "It can be fixed", minimizes the work, the sacrifices, the courage, and the joys that come from parenting a cleft child.  

That's what I would say. 



1 comment:

  1. Jennifer, What thought-provoking statements. I am so sorry about making assumptions without knowing the true situation. Maybe most of us just don't know what to say & think you want us to be positive. Much more thought needs to go into my comments in the future. Thanks for sharing.

    ReplyDelete