A Cleft What?

A bilateral cleft lip and palate. 

While in growing inside a warm belly Daniel's upper lip and palate didn't fully come together! This is one of the most common birth defects, affecting about 1 in 700 children in the USA, and closer to 1 in 500  newborns in Utah. Nobody knows what causes it, though it is linked to smoking and genetics. 

Basically there is a gap in Danny's lip and gum line, and there is no palate. You can pretty much see straight up into his nose when he opens his mouth. It can be pretty cool to look at.

You can easily see the septum dividing his nasal cavities.
 His front gum line is protruding forward with his lip on top of that

Here are some links if you want to read more about clefts:

http://www.medicinenet.com/cleft_palate_and_cleft_lip/article.htm

http://kidshealth.org/parent/medical/ears/cleft_lip_palate.html

This is a cosmetic defect only, and does not affect brain development, learning, or any other aspect of regular growth or development anywhere else in the body. With our wonderful modern medicine, it can be repaired through plastic surgery and orthodontic interventions - almost to where any scarring or abnormality is undetectable. His lips and mouth do not hurt Daniel, though he sometimes has raspy breathing and gets mad when he spits up if milk gets up into his sinuses. He will probably need some speech therapy at some point as his mouth changes with the various surgeries and repairs.

We knew that there was a possibility of a cleft before our son was born, so we were prepared, however it ended up a little worse than we were hoping for...

          Some kids are born with just a cleft lip on one side. 

          Some are born with a cleft lip on both sides. 

          Some with just a cleft palate on one side, others with a cleft palate on both sides. 

          Some kids have both a cleft lip and palate, but just on one side. 

          Daniel has a cleft lip on both sides (though one side is quite minor) and pretty much has no palate to speak of! However he only has a gap in his gumline on one side. Yay!

Not the prettiest picture, but here you can see up into his sinuses - pretty crazy
The small white blob in the middle is a lovely boogie. Ick.
Again you can see how his gum line and part of his lip comes too far forward

Surgeries Galore!

Because of the severity of Daniel's cleft  he is in for quite a few surgeries the first 5 years in his life, starting with a minor surgery January 4th to get a prosthetic palate that will be adjusted and replaced as he grows. It will also be attached to his protruding gum line and help bring it in, kinda like braces for teeth. He will have his lip closed at 4 months on March 3rd. After that comes a surgery to get a soft palate around 9 months, another surgery between 18-42 months for another soft palate repair. He will get his hard palate repaired around 4 years old, and a bone graft to fix his gum line around 6 years old. Around 6 to 7 years he will get any neede nose and lip revisions and after that there will be various orthodontic procedures to align his teeth and keep his jaw aligned. The hard palate prosthesis is also frequently adjusted until the reapir at 4 years.


UGH!


But we are very, very grateful that we have such great surgeons so close with so much experience repairing clefts. We have heard great things about the team at Primary Children's Medical Center and are happy that we are in good hands with them.