Friday, December 3, 2010

Paige's Cleft Journey

I will continue to add to this page as I find out more, and as Paige's journey progresses:

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.
Paige will be born with a complete unilateral cleft lip on the right side, meaning the gap extends into her nostril, and most likely she will have a complete unilateral cleft palate, meaning the gap in the palate runs all the way from her gumline in front, through her hard and maybe her soft palate, to her 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."

Clefts are the most common birth defect, affecting one in every 700 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.
View a video that shows one baby's story at a Detroit Hospital:
Cleft Lip Surgery Video - Detroit Medical Center
Paige's timeline so far:
August 30, 2010:
22 week ultrasound reveals cleft lip 
September 27th, 2010:
26 week ultrasound shows probable gumline involvement. We can't tell how extensive the palate is involved until birth.
December 2, 2010:
Interviewed cleft team at Children's Hospital of Orange County and will select surgeon from recommendations. 
January 2, 2011: 
Paige's estimated due date.
Lip and nose repair surgery, ear tube placement (About age 10 weeks)
Hard palate surgery and soft palate (About age 8-10 months)
Possible lip and nose revision (About age 4 years)
Bone graft to complete gum line (About age 8-9 years)

No comments:

Post a Comment