PURPOSE:
My belief in all of this is that the small little bits of information
related to a child's surgery and experience are a hugh deal to a parent considering a procedure. Personally, I know
many of the questions covered in this website were racing through my mind ---plus I didn't even think of some of these things
and would like to have known. Many of the items listed here are beyond the role of the MD ---there just isn't time to
discuss all of this with each parent. I would have wanted another parent's perspective anyway. Often as a parent,
one is intimidated by the MD (just because - not for any good reason) and won't ask these questions. Plus some parents,
my self included, need to know the whole picture ahead of time whereas often the medical professional's role is to fill parents
in on the essentials and include additional items on a need to know basis. The reason I chose to do this website was
to try and help parents like me. I would have loved to have had access to a web page like this where I could get the
information I was desiring when I wanted to have it, and could pursue it further on a personal level if/and when I desired.
This web page will work best if other parents share what they have experienced as well so perspectives can be woven into this
ongoing experience that we all share.
MISSION:
To promote awareness to families of potential pediatric spine surgery
candidates of the surgical experience; and, to serve as a forum to openly share "parent-to-parent" regarding the procedure
and its effect on a child and his/her family.
TARGET AUDIENCE:
Parents/Families of children that are preparing for, or considering
surgery for a young complex spine deformity; and, parents/families of children that have already had the procedure.
OBJECTIVE/GOALS:
A. To provide opportunities for parents to educate themselves
on various young spine deformity procedures; the various diagnoses associated with spinal deformities; and Shriners Hospital
of Philadelphia.
B. To provide a supportive environment for parents of children
that are candidates for, or who have had spinal procedures, to share emotions, feelings, and experiences parent-to-parent
in order to foster a sense of fellowship and potentially assist in calming fears of the procedure and its effects.
C. To provide practical advice on how to manage the hospitalization/post-hospitalization
experience through tried-and-true ideas and techniques of parents and their families.
