Hi, I'm new to this group. I'm enlisted on another craniosynostosis group and
got this email address from one of those moms. My daughter was diagnosed with
craniosynostosis when she was three-and-a-half-months-old. The neurologist and
neurosurgeon who saw her decided it wouldn't be beneficial to open up her
sutures, though. They were all closed. Her brain wasn't growing as it should.
Her head is still very small--it's not even on the growth charts. She's
14-months-old now. She has many other problems--cerebral palsy, dysphagia,
cortical visual impairment, petit mal and grande mal seizures, myoclonic jerk,
and is developmentally delayed both physically and mentally. What is the
quality of life for children like her? I'm assuming it's about the same, she'll
just have a smaller head and be slow to develop in many areas. She's my first
child and the neurologists that she's seen theorize that she had a stroke the
day before she was born. The placenta had come lose (30%) before she was born,
but there was hardly any blood loss. If any of you parents out there have a
similar situation or know what I can expect I would like to hear from you.

Sue in New York



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