Makayla H.

Pennsylvania

Birth Date - November 05, 2008

Main Diagnosis - Arnold Chiari Malformation and Crainiosynostosis, FOX C1 gene

THEME:  dark bears, either back or brown, and moose

Quilt Deadline: 1/15/2014

Biography

My 4th baby was born with a condition called Craniosynostosis. This

occurs when the "soft spots" in our skulls close too soon. In her case she

developed torticollis (or tight muscles in her neck) because of this. She

underwent a major operation at 5 months old (to the day!) where they had to

remove her skull and re shape it, then put it back on her head like a mosaic

leaving gaps to allow her skull to grow as her brain grew.

Because she had a deformed skull it caused her brain to grow a little off to one

side during her first few months of life. (the surgery is risky and they have to

find a balance between pushing it off as long as possible vs doing it sooner)

Because of the deformation it pushed her brain stem over a little bit. This

caused an Arnold Chiari Malformation type 1 to occur. This is where part of the

brain stem slips down into the spinal column and blocks the flow of cerebral

spinal fluid to and from the brain.

At 11 months old she had to have a second surgery to to in, remove the portion

of her brain stem that was clogging the flow of CSF and a portion of the top 3

vertebra, they then patched the area up, creating a wider path and an adequate

flow to CSF could resume.

She has healed up very well and is doing nicely. She did not even qualify for

special education pre school last year!!! YAY! She's doing that well!

She LOVES to draw, and for a 4 year old draws an amazing Pikachu! She does still

have head aches, limb pain, and wide gaps in her skull that will probably need

to be fixed.

She's been dealing with chronic head pain and still see's a neuro surgeon to see

when her next surgery will be.

We currently see a wide range of doctors, specialists, and researchers to help

get to the bottom of everything, and while the kids are all doing very well from

my standpoint, they still require constant appointments, medical care, and trips

for studies.