Joined: Jul 2010
Posts: 188
Cleft Awareness Week
5/10/2016 at 8:34 AM
This week is cleft awareness week, so I wanted to spread some positive cleft awareness. A cleft refers to a separation of the two sides of the upper lip. A cleft palate refers to an opening in the roof of the mouth. We all had a cleft at some point in our mother's womb. 699 times out of 700 that cleft fully closes as the fetus develops.
Our son is almost 5 years old now and he surprised us by being born with a cleft. The ultrasound didn't catch it. To this day, I'm actually thankful that it didn't because it would've just stressed me out too much.
Upon finding out about the cleft, many parents feel saddened. They mourn the loss of that perfect baby they hoped and expected. Parents may feel alone, angry, or guilty.
Mostly, these feelings quickly fade once meeting their little one, holding them in their arms and realizing that their baby is beautiful and unique in their own special way. There is no love like that of a parent. This love and acceptance is so strong and life changing that it is often hard to see their face change once it's time for surgery to repair the cleft.
My son had the privilege of having two first smiles. I still love that first cleft baby smile and adore looking back on those pictures.
So, what questions do you have about clefts?
What causes clefts?? Honestly, the scientific community doesn't know. There are a variety of things that could POSSIBLY cause clefts, but the majority of the time, the cause is unknown. In our case, we have no family history and none of the known possible causes applied to us. Some of those possible causes i:nclude medications, drugs, alcohol, chemical or virus exposures and other possible genetic and environmental factors.
What are the struggles?? The most common setback is feeding. Imagine not being able to close your mouth to eat or having food get in your nose all the time. Cleft babies often need specialty bottles to help them get the nutrition needing to gain weight. Even then, some babies are diagnosed as failure to thrive and may need a feeding tube. Many babies suffer acid reflux. Children with a cleft palate have a higher chance of suffering ear infections. Obviously, dental issues is a lifelong struggle. Children have increased risk of cavitities as well as missing, extra, malformed, or displaced teeth. Our son has an extra upper tooth and his one tooth is higher than the rest because of a notch in his gumline. It is very hard to brush his teeth. Finally, speech is another lifelong issue for some. I recently read a tweet about a lady who was threatened to be kicked out of an establishment because she was slurring her words (no, she wasn't drunk. She just had a cleft palate)
Recently, 4 children born with a cleft got together at the Souris School to do a photoshoot for a new book of cleft stories titled "I Wish I'd Known Clefts Create Courage." I'm so proud to represent this area in a worldwide effort to bring cleft awareness. These children represented Brandon, Souris and Hartney.
Do you know anyone born with a cleft? Do you have any questions for me about clefts? Were YOU born with a cleft? If so, how many surgeries have you had and who has been a big influence in your cleft journey?