Kam's Craniofacial Challenge

Hi! Thank you for taking the time to read Kam's story! This beautiful little boy had a tough time when he was born to my son and his wife, and had to stay in NICU for a month after he came into this world to try and get him strong enough to go home with mommy, daddy, and sissy. He was born with Metopic Craniosynostosis (pronounced crane-eo-sin-os-TOW-sis). A newborn baby’s skull isn’t a single, solid structure—it’s actually made up of several plates. Between those plates are fibrous joints called sutures.

Normally, the sutures in a developing infant’s skull fuse in a gradual process over time. However, sometimes the fusing occurs too early. Metopic synostosis (also referred to as trigonocephaly or metopic suture craniosynostosis) shows as a prominent ridge down the forehead from premature fusing of the metopic suture, creating a triangular shape to the forehead. They have a noticeable ridge along their foreheads. They will also have a pointed, almost triangular shape to the front and top of their skulls and eyes that appear too close together.  

Intracranial pressure (pressure inside the skull) can cause delays in development or permanent brain damage if not corrected. The surgery includes peeling forward the skin from the top of the head, cutting apart the skull, realigning the parts and attaching everything with plates and dissolvable screws!

Whew! That's a lot to digest! I (Namma Tootie) had never heard of this condition. I certainly needed to do a lot of homework. When Kam was born, his biggest challenge was the condition of his skull. He also had short "long bones" that may result in a much shortened stature. Now; a bulge on the forehead and being vertically challenged is not the end of the world. It's the possibility that this otherwise happy and healthy little boy will undoubtably develop mental and developmental  problems scares us.

So- why the asking of support from strangers?  My son, a Vet, and his wife are struggling financially right now. They were doing ok for awhile; he was working full time at a car stereo store and she was working at a local health care center and going to school full time. Unfortunately; a series of events and issues popped up, and they are at the end of their rope. My son came over last night, and had to explain that they were going to Seattle for testing and to meet with the surgeon, but didn't have enough money for gas, food or lodging. With a small personal loan from grampa, they'll make the appointment. What's next? The surgery. It's been known to cost anywhere from $20,000 to $200,000 and may not be covered by insurance. They are also looking to move to Seattle and find work there because it will be a drain on their finances to constantly shuttle back and forth plus the other costs (averaging $1500 a visit) for all of the followup work.

I'm asking for your help, for Kam and his mommy, daddy and big sister. Please help me to support them in this journey. I have the honor to watch my granbabies every Tuesday night; my little way of helping while mommy is in night school. Give this young family, and more importantly, this beautiful little boy a chance to overcome his challenge!