July is National Cleft & Craniofacial Awareness & Prevention Month. I have been excited all year to write this post for some reason. And I'm sure most of that reason is my nephew. This little guy is seriously the sweetest thing. I love all of my nieces and nephews so much, but lets just say I hold a special place in my heart for this one. (I mean just look at this cute kid!)
Photo by: Kassie Crapo Photographer
He was born premature, with a complete bilateral cleft lip and palate. And his parents had no idea until the doctors laid this tiny baby in their arms. They were beyond shocked and overwhelmed. To care for a premie is hard enough, but one that can't latch easily and has additional medical needs can seem impossible at times, I'm sure. Me being the "helpful" younger sister right in the middle of graduate school, went to work getting services in place and providing [overwhelming] them with additional information and resources. They lived in an area where I had done developmental therapy for the early intervention program and one of my professors was on the craniofacial team in the area--so naturally I was the expert they needed to help them through this. ;) Truthfully they had wonderful hospital staff who provided them with most of the same information that I did.
Anyway, I share all of this because I think raising awareness is so important for people just like them. Everyone knows there are different degrees to a cleft lip and/or palate. Everyone knows that folic acid is crucial in the beginning weeks of pregnancy, specifically to help prevent certain birth defects including cleft lip & palate. Everyone knows that the doctors will specifically check for a cleft lip during your ultrasound at about 18 weeks. Everyone knows that most causes of a cleft lip and palate are a combination of genetics and environmental factors. Everyone knows there are early intervention programs in every state to help with therapies, family support, and other additional resources. But are these really things that everyone knows? No. My SIL didn't think to specifically ask if the tech could see that her baby had a cleft palate during that very special ultrasound. Others have no idea that they can receive services or support through their state when their child is under 3 years of age at no cost or reduced costs. And I'm sure there are still many who have no idea that not taking folic acid during pregnancy may lead to some birth defects.
There is a website specifically dedicated to spreading awareness this month- NCCAMP.org. They provide wonderful information on how to get involved, events happening, how to organize your own event, and other helpful resources for families. The Cleft Palate Foundation is another great resource if you are wanting to learn more. They have wonderful handouts and information for families and professionals. The Children's Craniofacial Association is one other website I would like to mention. This site has great information on different syndromes, qualified centers (listed by state), and events happening around the US. So this month check out an event in your area and get involved or better yet, organize one yourself to spread awareness!