Monday, November 22, 2010

Cerebrocostomandibular Syndrome

This is the official title of Abby's syndrome, otherwise known as CCMS.  Quite a mouthful, eh?  Let me break it down for you.

Cerebro:  relating to the brain.  We have no idea how Abby's development will be at this point.  Only time will tell, but we are extremely thankful that her brain is structurally sound.

Costo:  relating to the ribs.  In Abby's case, about half of her ribs appear to be floating in pieces on an X-ray.  It's almost as if someone took a baseball bat to her ribcage.  The pieces are actually connected with fibrous tissue, but her ribs cannot protect her lungs and heart like they are supposed to.  Her spine is also affected by this.

Mandibular:  relating to the lower jaw.  Abby's jaw is very recessed and small.  Because of this, her tongue (which is normal sized) is too big for her mouth and causes an obstruction of her airway.

We aren't exactly sure what kinds of surgeries Abby will be having, but here's what we know right now:

Her cleft palate will need to be repaired around age 2.  The spine will most likely require multiple surgeries to correct.  Thankfully, a world-renowned pediatric spinal surgeon is right here in Baltimore at JH!  We will be taking Abby for an evaluation to see if she will be a candidate for titanium ribs.  Yep, I know.  That sounds ridiculous and sci-fi.  But it's true!  Check out this website for more information.  She'll have many outpatient surgeries to expand the ribs a little at a time until the ribcage is done growing (around age 14 or so).  We're looking at upwards to 30 surgeries, but who's counting?

I am joining Reagan's quest to help families dealing with this extremely rare syndrome to connect with each other and hoping that it will show up in Google.  If you're reading this and you're saying to yourself, that's what my baby has! PLEASE email me!  I would love to talk to you!

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