I have been meaning all along to have a page where we explain a bit more about facial clefting in general and Simon's cleft in particular, so I will squeak it in under the wire here right at the end of September. I will continue to add to this page as I find out more, and as Simon's journey progresses. Let's start at the beginning:What is a cleft?
A cleft of the lip and/or palate occurs very early in pregnancy, between 7 and 11 weeks after conception. The face and head form from back to front, normally meeting in the middle and forming the two lines under the nose and the raised ridge running down the center of the palate as they fuse. If the timing is off for some reason, the lip and/or the palate fail to fuse completely, and the resulting gap is the cleft.
Simon was born with a complete unilateral cleft lip, meaning the gap extended into his nostril, and a complete unilateral cleft palate, meaning the gap in the palate runs all the way from his gumline in front, through his hard and soft palate, to his uvula in the back.What causes a cleft? Is it genetic or environmental, or just random?
The causes of clefting are only partially understood. In some cases it runs in families, and some ethnic groups have a higher incidence of clefting, but most of the time there is no family history and no connection to any other health problems. There are also some environmental factors which can increase the risk, such as maternal smoking, certain medications and high exposure to pesticides, but again most of the time it is just a random thing. We were completely surprised by the diagnosis, since we have no family history on either side, and I was extremely careful during the whole pregnancy, doing everything "right."
We didn't realize that clefts are the most common birth defect, affecting one in every 600 births in the U.S. We all know people affected by clefts, but most of the time don't realize it because of the wonderful success of repairs, which are performed so early most of us have never seen an unrepaired cleft lip.
Simon's timeline so far:
December 19, 2009:
19 week ultrasound reveals cleft lip and probable gumline involvement. We can't tell anything about the palate until birth.
February-March 2010:
Interview 3 cleft teams and select RUSH University Craniofacial Clinic
May 6, 2010:
Simon is born, and we see that he has a complete cleft lip on the right side, and a complete cleft palate, which means he will not be able to breastfeed, since he can't create a seal and get suction.
May 20, 2010:
Simon's first cleft team evaluation
May 25, 2010:
Remove a tooth that is erupting in the cleft site of the gumline
May 28, 2010:
Begin nasoalveolar molding (NAM) treatment
August 5, 2010:
Lip, nose and soft palate repair surgery, ear tube placement (age 13 weeks)
April 20, 2011:
Hard palate surgery and soft palate revision
TBD, 2017-2019:
Bone graft to complete gumline
More information to come...
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