CLEFT TALK IN THE HOME - Parents' Reaction To The Cleft

by Dr. John Canady, Univ. of Iowa Hospitals & Clinics

 At the University of Iowa we are in the middle of a recall study of patients with cleft lip and palate who were treated here decades ago to see how they are doing and if we have done them any good.  One of the challenges in caring for these patients is that the final result is not known for a long time and, surprisingly, there have been very few LONG term follow up studies of patients with these conditions.

 We are fortunate in having a cooperative, stable patient population so we undertook this study to see what the outcomes (medical, marriage, job, etc.) were.

 After talking to several patients, one thing has emerged in my mind as crucial to how the patient does in life.  That thing is the parent's reaction to the cleft lip/palate. 

 I have talked to patients who were successful in their marriage, had successful, happy kids and were successful in their careers.  These careers included being a Navy SEAL in Vietnam (actually this was before they were called SEALS, but it was the same gig), and just about anything else you can imagine you would want your child to be.  THESE people always remembered being able to talk to their family about what had happened and what was going to happen.  It was a topic open for discussion anytime in the family and was treated very matter of factly and in an educational way.

 I have also talked to patients who cannot stay married, cannot hold a job, and are desperately unhappy, all "because I have a cleft."  On further questioning, the topic of the cleft was a taboo - never to be discussed in the family and the parents never discussed it with them privately.  "It was as if it never happened and it certainly was never to be discussed..." was a theme that was repeated again and again.

 It is hard to statistically prove that these two approaches are different, but I cannot help but believe that there is something real here.

 I believe this strongly enough that I now tell parents that "how this all turns out is much more up to you than to me..."  Maybe this is a strange thing for a plastic surgeon to say, but I really believe it.

 I should point out that there was very little difference in facial appearance between these two groups.  So as much as I would like to believe that a good surgical result makes all the difference in the world, I really think that Mom and Dad and brothers and sisters have much more of an impact on the final outcome than the surgeons do. 

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(c) 1996 Wide Smiles

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 Copied for Charleston Clefts, Inc., newborn survival kits and newsletter with permission from Joanne Green of WideSmiles and Dr. John Canady of University of Iowa Hospitals and Clinics.