Cleft Lip / Palate Support Group
Cleft is a congenital deformity caused by a failure in facial development during gestation. It can be treated with surgery shortly after birth with highly successful results. Cleft occurs in somewhere between one in 600 and one in 800 births. Cleft occurs in several severities and is divided in two major categories: cleft lip and cleft palate.
I thought of a possible format for a book (or just a pamphlet, who knows) on CL/P yesterday. Just call it something like "50 Questions and Answers About Cleft Lip and Palate (For the Parent, the Patient, and the Person on the Street). It could be divided into sections to cover everything from the basic definition to a parent's concerns to the philosophical "why me?" and "why is life unfair?" type questions. The answers wouldn't be authoritative, except to the extent they came from qualified medical professionals or represented the subjective opinions of cleft people, but I think it could be a great way to show an intelligent, down-to-earth conversation about what the connotations of a cleft really are.
For example One of the basic questions might be "what is the preferred terminology?" We can spell out what it ISN'T, of course, but then say how there's not really consensus as to what the best term is. Often people might not even know what it is and it's not really talked about much outside of the relevant medical circles, so there's just not a lot of NEED for a more accessible general term than "cleft palate". I think a better, more accessible but still accurate term would be to summarize the CL/P continuum with "cleft lip" instead of "cleft palate". Because it's the cleft lip which is visible, right? And I would prefer to describe as something on the outside, rather than something with an uncommon name that's more on the inside.
Anyway.. I think the more feedback I could get the better this would be. Which includes every single one of you! Even if you don't have a cleft lip yourself, the perspectives of parents, friends, siblings, doctors, and merely curious people would be of value. So if you can think of any prospective questions, as well as any ideas for how to answer those questions relating to cleft that you or someone else might ask, I would be honored if you would share. It could be anything at all that somebody might ask someone else, themselves or even God or society as a whole if you wanted to take those routes.
For example One of the basic questions might be "what is the preferred terminology?" We can spell out what it ISN'T, of course, but then say how there's not really consensus as to what the best term is. Often people might not even know what it is and it's not really talked about much outside of the relevant medical circles, so there's just not a lot of NEED for a more accessible general term than "cleft palate". I think a better, more accessible but still accurate term would be to summarize the CL/P continuum with "cleft lip" instead of "cleft palate". Because it's the cleft lip which is visible, right? And I would prefer to describe as something on the outside, rather than something with an uncommon name that's more on the inside.
Anyway.. I think the more feedback I could get the better this would be. Which includes every single one of you! Even if you don't have a cleft lip yourself, the perspectives of parents, friends, siblings, doctors, and merely curious people would be of value. So if you can think of any prospective questions, as well as any ideas for how to answer those questions relating to cleft that you or someone else might ask, I would be honored if you would share. It could be anything at all that somebody might ask someone else, themselves or even God or society as a whole if you wanted to take those routes.
I think maybe the answer to "why me" might be well answered in a layman's scientific way, with reference to the fact that it is the most common "defect", and shared with many thousands. That would help, I think, with feeling like somehow there was something wrong with ME instead of having a relatively common medical condition.
I agree that presenting the best layman's explanation possible of cleft is important, and that it could help somebody place it in context. I do want to go a bit beyond the scientific explanations to the philosophical dimension, but to present that also in a "layman's" fashion, making it also as accessible as possible without oversimplifying.
I hadn't considered that cleft palate might be the more troublesome condition for some patients (or maybe even most, for all I know.) I do think that the majority of social and psychological issues can be traced to cleft lip, with the possible exception of speech impediment. Maybe "cleft" or just "scar" is the best general term for the moment, although I still question whether, if we're going to summarize both cleft lip and palate with "cleft palate", if we might not just as well say "cleft lip". However, maybe neither one is ideal. And maybe it's just the context and connotations that matter, not the words themselves.
If we can get children to the age where they can hold their heads high and NOT worry about what others think, it's a cake walk but a long walk, to get there! How do we help children when they are young? Good question for me right now as I have been invited to serve as a consultant to a Cleft Palate team. So I invite any dialog on this point! I just suffered through and for the grace of God I arrived at this point.
And, of nose and lip and speech being different: of those, I suppose only "lip" is attributable to just cleft lip instead of cleft palate too. I have experienced those self-perceptions myself. So, that could be an argument for why "cleft lip" is not an adequate summation for cleft lip and palate. I continue to think, however, that "cleft palate" is too obscure of a term to for something that is so up front. I may refer to it as "cleft lip" at times just because I think it would be easier for people to remember and easier to describe, but I suppose my quest for a more usable term continues. (not sure if anyone else feels the same way I do on that score.)
These are some of the "question" topics that have flitted through my mind:
From the neutral bystander:
What is cleft lip/palate?
What causes it? (to the best of medical knowledge)
What is the treatment like?
What are common associated issues, medical and otherwise?
To someone with a cleft:
Were you teased much as a child?
How did the teasing affect you?
How did you deal with those effects?
Do you feel you like you have lower self-esteem or self-confidence because of your cleft?
How did you deal with this?
How important do you consider cleft lip / palate to have been in your life?
From the person with a cleft:
If I say that cleft palate has been a major influence in my life, does that diminish my individuality in some way?
How can I define myself beyond this attribute of my face and personal history?
Why did this happen to me? (or)
Why do unfair things like birth defects happen? Does this mean there is God, justice, or meaning in life?
and so on... this is just for brainstorming purposes, because I like reading what you all have to say.
When I do research, I find that a lot of the websites I visit contain the same generic information about treatment plans for CLPrepair surgery, orthodontics, nasal repair, etc. They make it sound so simple, but we all know that process is anything but simple. I think these sites should go more in-depth about these procedures as well as be up-to-date with any new, less invasive techniques that yield better results.
When my friends and peers would ask me about my CLP and what kind of surgeries I would be having, I had no idea what to say. A lot of them would ask why couldnt I just get some braces and a nose job to improve my physical appearance, but I didnt know how to tell people that it wasnt an easy fix.
A more in-depth approach to explaining the treatment process could help alleviate any fears that parents or kids with CLP may have.
Of course dealing with older patients themselves would be a different dynamic. Maybe some doctors are better at keeping the balance than others. I did try to describe the general issue of cleft patients feeling let down by their surgeries (and what they expected from them) and, even though they are great doctors and great people, I got the impression they didn't quite understand the point of view of somebody who feels after an operation that their doctor was unrealistic about the risks. So maybe a candid discussion of that would be helpful. I would certainly try to present them with that point of view and get some feedback from them, as well. How well do we really understand the doctor's point of view, as well? I think maximizing understanding between the doctor and patient about what each other's perspectives are like would be the best.
A good cosmetic repair is important to a parent of an infant. I had initial repair as an infant but my next surgery was not until the age of 19. It was life changing for me, just to look better and feeling better about what I saw when I looked in the mirror. They are somewhat different in their perspective but proactive parents want what is best for their child. I can't explain my parents' case but I have seen it from the side of a child who yearns to look and sound "normal" and not be teased. Having survived the first 19 years, I was motivated to do whatever it took to get what I needed. I spent time in medical libraries researching procedures and surgeons by way of study and interview. I was a college student and had a unique perspective.
I also had the good fortune of growing up a few miles from a small church based medical school who had professor on staff who allowed me access to all he had. He had a complete bilateral cleft and spoke very intelligibly with a prosthesis and directed me to a prosthodontist who made me a prosthesis to fill the opening in my mouth left after my initial palate repair. It allowed me to keep the food from going up and out my nose and helped with velopharyngeal closure. The process that keeps air from escaping out of the nose causing the "nasal" speech. There were a few more surgeries to repair the opening that still has some leaks but I can live with them.
Depending on the child and the severity of the cleft, some are wider and some respond better to initial surgery, the final surgery used to be a phayngeal flap, where tissue is taken from the pharynx and attached to the repaired soft palate. It takes intensive speech therapy to learn to use the new mechanism and it causes a lot of gagging at first! Good article:
http://emedicine.medscape.com/article/1279928-overview
I am suspect that many patients are not receiving this procedure, just by observing people I meet in stores, as clerks or fast food restaurants and I wonder if the reason they are not getting it, is because of advocacy. Speech of people in more white collar jobs tend to have better speech which leads me to think that they had better advocacy. I have to say, this really pisses me off! It is also an indication that there are social class reasons and that should never happen! Unacceptable! I also thing that with more limited funding, parents are not being direct to available services. Another unacceptable idea!
I had the good fortune to be near USC during vacations and school breaks and had an orthodontist who taught cleft palate orthodontics there. Then I had the very good luck of going to college in a town where the Lindamood Method began and I knew the Lindamoods. They have passed on and it is now the Lindamood-Bell system, used all over the country in speech therapy and in classrooms, because it covers all types of speech and articulation issues. I had to relearn the way I did everything when it came to speech.
As I see it, we need teams that include case manager/advocates and social and psychological services, for parents and patients. Without an advocate, there is never a "best" outcome. It is a long and arduous path filled with disappointment that needs to be redirected toward fulfilling the next goal, with the reality that in one head, there are only so many surgeries that can be done to maximize outcome. This takes years of balancing, planning and execution and having a new game plan when it becomes necessary. Not all therapies will meet with the same success, given the nature of clefting and its many possible combinations. Even with the most "simple", isolated cleft lip there is ideally, more than one surgery. The smile train pictures that show dramatic improvement, don't show more than a static photo. There is so much more than what a single photo can convey. What about speech and orthodontics and eating and social and psychological factors?
Jon, I think you have gotten yourself into a lot of work! I thank you for that! I am glad to do whatever I can to help. Have you solicited any of the smile.org pamphlets? I have not but I wonder if it wouldn't be a good idea to see what they have that might be added to and improved.
My undeniable conclusion is that outcomes are based, largely, upon advocacy and management. This also includes getting the best surgeons and clinicians for the jobs. That is another story but it is also the very best place to start! I wonder if there are blogs about parent input regarding surgeons and procedures and orthodontic and speech clinics who did the best work. Hell hath no fury, like a concerned mother!
I didn't have anyone advocating for my treatment plans except for my pediatrician, who of course could only do so much without overstepping her boundaries. She would always ask me about my treatment and she always seemed upset at the lack of progress and follow-up. I remember she would always pull my mom aside to "discuss" why I wasn't getting treated, but that's all she could do. I remember her issuing a ton of referrals and making sure her nurse would help us with anything we needed. She had to trust that my mom would be responsible enough to to oversee my treatment and surgeries, which she didn't.
In situations like these, a case worker could do more to ensure that a child doesn't have experience the hardships that barbieO and I experienced. If parents can't be responsible enough to get their child treatment, then I think there should be someone on the craniofacial team to advocate for the child because I really do think that denying a child medical treatment of any kind is neglect and should be considered a crime.
I just left the craniofacial orthodontist's office, and there was this young boy, about 13 or 14 years old, and his doctors were damn near yelling at him because he had a serious issue with his braces and they wanted to speak with his parents. Apparently his parents don't accompany him to his appointments and he kept giving his doctors excuses for why this parents weren't present. They saw through his attempts to cover up for his parents and they continued to grill him. He looked terrified and guilty and embarassed about the entire situation. I felt SO bad for this kid because I'm 24 and I still get nervous and scared at some of my appointments so I can't imagine bearing such a huge load at such a young age. I commend this kid for being courageous and responsible, but I strongly believe situations like this one could easily be prevented if there was some type of social services member on the craniofacial team.
There is a social worker on the craniofacial team where I volunteer. Perhaps I will invite her to join this forum and give her two cents.
I've been thinking some about the question of how to define yourself without cleft; whether you should feel like you have to. It's a tricky one for me, personally.