Sept is Craniofacial Acceptance Month

September is Craniofacial Acceptance Month!  I guess I prefer Awareness to Acceptance, or Craniofacial Education Month would be even better, but whatever the title, the point is to educate others.  So thought I would educate the 2 people who may read this ; )  Feb. '09 my son was born with an incomplete bilateral cleft lip.  This was a shock surprise at birth.  We had the usual 20 week ultrasound, she got a great, full on, unobstructed facial shot and still somehow completely missed the diagnosis.  It was probably a blessing that it was missed, I would have worried myself sick for the remainder of the pregnancy.  Like most people I thought this was something that happened only to those unhappy kids in the Smile Train ads featured in the back of the magazines.  I had never seen a child with a cleft even though it is one of the most common birth defects in the United States, occurring in @ 1 in 700 births (this figure is dependent upon where you are getting the info, ethnic origin and type of cleft).  So if it's so common, why don't you see more cleft affected kids here?  Because typically the lip is repaired at @ 3 months old.  If you look, really look, at people you will see many that have the telltale faded scar!  Unless a person is looking for it though, it would never be noticed.  
Some things I wish people knew:
- If a mother has a child born with a cleft it DOES NOT necessarily mean the mother smoked, drank, did drugs, ate terrible, had no prenatal care, didn't take her vitamins, or any other reason people use to blame the mother.  We have no family history and I did everything "right" - stuff just happens sometimes.  Dr's don't fully understand what causes clefting.  It is caused by a gene mutation either passed down through generations, through an environmental exposure or just a random unexplained incident.
- Being cleft affected does not affect development or mentality therefore it shouldn't be surprising that the child can crawl, walk, ect. at the expected time.  If the palate is involved there will most likely be some speech therapy needed, but other than that all other milestones are met the same as any other child.  There are many syndromes associated with clefting that can result in delays, however an isolated cleft does not.
- When the lip (and/or palate) is repaired, that is not the end of treatments for that child (or his/her parents).  As they grow, there is often nose adjustments, lip revisions, laser scar treatments, MUCH orthodontic work, ear tubes to replace, and speech therapy.  When you ask "is he done with surgeries now" the answer is no - he will not be done until his teen years. We don't know how his face is going to grow, so we don't know when additional work will be needed, but it's looming out there .  Each year we will go back for a check-up and our perfectionist surgeon will see how his nose is growing and scar is fading and determine what, if anything, needs done.  Then when he is 6-12 yrs the orthodontic work will begin.
- The lip is formed @ the 7th week of pregnancy, the palate @ the 11th week.  So many clefts are developed before a person even knows they are pregnant.
-  Mothers of  cleft affected babies think their babies are just as beautiful as non affected babies!  We also have feelings!  So if you are one of those nosy people who feel the need to pop their heads into a new moms stroller/snugli/cart and you happen to see a baby with a birth difference - be polite - "oh what a cute - long pause - outfit" does not qualify as polite.....
- Harelip is a bad, bad, derogatory term that should be stricken from the English language - don't use it.....Ever............ 
- Yes, he has a scar, it will fade as all scars do.  No, he will not have to forever hide it with a mustache.
-  The cleft itself doesn't hurt, surgery is the part that hurts.  Those kids in the Smile Train ads look so sad because if they photographed them looking happy then no one would send donations.  Don't get me wrong, Smile Train and Operation Smile are incredible organizations and they are wonderful charities, I just feel that the way the children are depicted could be misleading.
- Finally, most importantly, we love him EXACTLY the way he was born!

There are many famous people who are cleft affected!!!  This is a very short list of those that are more well known -
King Tut is believed to have a cleft palate
Cheech Marin
Doc Holliday
Tom Brokaw 
Peyton Manning
Tad Lincoln - Abe Lincolns 4th son
Jesse Jackson
Joaquin Phoenix (microform cleft lip)