Académique Documents
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Leforte 1 is a max
illary advancement
which corrected the
ahgnment of my upper jaw.
My upper jaw was de
pressed about twelve milli
meters and, as a result, I
had an underbite. This was
the part of my face which I
hated because, to me, it was
the ugly part. But as time
slipped away and the opera
tion approached I became
more and more scared. It
was not simply pre-surgery
jitters; it was a powerful
and irrational fear that ex
tended into other areas of
my life not related to the op
eration.
It had only been less
than twenty-four hours
since I had undergone a
Leforte 1 with a bone graft
when I saw myself in the
mirror in the hospital bath
room. I did not recognize my
swollen face. The reflection
surprised me, despite the
fact that I knew I was going
to look strange. I was told
that over the next twenty
four hours the swelling
would get worse. It did. I
crept up my face tojust be
low my eyes. My entire face
turned a yellowish hue. My
lower jaw on either side of
my chin lost its roundness
and took on an angular
form. It did not look like me.
My hip hurt from where
they took the bone. I drooled
uncontrollably. I could not
sleep comfortable. I could
not talk. I communicated
through my own version of
sign language and eye
movements, which I mostly
.If
Forward Face
A Newsletter For
Craniofacial Disorders
Spring 1995
Advisory Board:
Betty Bednar
Diana Cassidy
Caren Crane
Hope Charkins Drazin, M.S. W
David Drazin, Ph.D.
Patricia Flanagan, M.S. W.
Lorraine Gibbons
Tony Gibbons
Jack Gross
Gisela Joseph
Joan Robertson
Caroline Rubino, R.N.
Cathy Sharkey Sarubbi
Edith Schneider
Audrey Sosis
Tina Steinbeck
Robert Surles
Charles Thorne, M.D.
Pam Tower
Carol Wolff
Page 2
CT
Apert Syndrome-NY
Debbie Bottiglieri
(516) 6899235
Edith Schneider
(718) 8377320
Veronica OOOr
(914) 947-4008
Trudy Attenberg
(203) 374-8199
Corey Torres
(718) 2715499
Craniofacial
Microsomia-VT
Orbital
Hypertelorism-NY
Mary Baldwin
(802) 482-3481
Nancy Bartlett
(516) 7952609
Debbie Smith
(908) 364-3384
Hemifacial
Microsomia-NY
MI
CT
Linda/Joe Bonventre
(516) 798-2271
Cathy Joyce
(203) 3259766
NJ
NJ
Moebius Syndrome-CA
Vicki McCarrell
(818) 9089288
Craniofacial Synostosis
NY
Nancy Bartlett
(516) 7952609
NJ
Pam Tower
(908) 9647726
Gloria Verdi
(313) 8553474
Barbara Robertson
(914) 2456121
Treacher Collins
Jamie Anton
(814) 455-5857
Emily Lustine
(215) 4872360
Betsy Old
(201) 7615438
PA
Hemangioma-CT
Jamie Anton
(814) 4555857
Emily Lustine
(215) 4872360
Pam Wiker
(203) 9723043
11111111
NJ
FACE
James Brown:
By: LIZ BROWN, Belfast, Ireland
n the 16th of
March 1992, after
a normal, healthy
pregnancy and a straightfor
ward labour and delivery
lasting just five and a half
hours from start to finish,
our second son, James was
born. At first sight, looking
at the top of his dark, curly
nutrition.
James spent six weeks in
the Neo-natal Unit at
Belfast City Hospital as we
learned to handle his tube
feeds and care for his trach
and began to organize our
home to accommodate the
medical equipment which is
an essential part of life for
James. During this time
James sawall the top doc
tors in Northern Ireland in
the fields of Audiology,
KN.T., Plastic Surgery, etc.
His health was stable and
though we were by no means
sure what the future held, at
the age of six weeks and one
day, James came home! His
brother was just over two
years old himself at that
time but he accepted James
undoncitionally and loves
him dearly. If he has every
been jealous of the attention
his brother receives, he has
never shown it.
Although James was
seen by the best doctors in
Northern Ireland, in a coun
try with a population of only
11/2 million, conditions like
T.C.S. are not seen all that
often and we were desperate
to ensure that everything
that needed to be done form
him was being done. We
were in the fortunate posi
tion ofhaving connections in
America in the form of my
brother and his family, and
of course from the moment
they heard of James' birth
and his condition, they
worked hard on our behalf to
find out as much as they
could about the syndrome
and its treatment. Through
them the contact with For
ward Face was established
and, in July 1992, we re
ceived a letter from Betsy
Old offering us the opportu
nity to bring James across
the Atlantic to N.Y.U. to be
assessed by Dr. McCarthy
and his team!! We had no
hesitation in accepting and,
in October 1992 after many
letters and phone calls we
James Brown:
As time went by we men
tioned this procedure to our
doctors here in Belfast. They
had heard ofit and were very
Continued
"
QUESTION...
As a young adult I'm trying
to put behind all the insecu
rities that past experiences
of looking different have
brought me. The one area I
have the hardest problem
with is meeting guys/girls.
How do I get past my face
and feel comfortable enough
to let someone get to know
me?
ANSWER#!
My face has never been an
obstacle when it comes to
forming relationships. How
Atresia
repair
and
Canalplasty, Dr. Lawrence
Brecht on Ear Prosthetics
and Ear Reconstruction.
Elsa Reich, MS, the Genetic
Counselor presented excit
ing new developments in ge
netic research in the field of
Craniofacial Conditions.
Families from the
tristate area benefited from
the doctors presentations
while their children enjoyed
the entertainment provided
by Part Magic with Bob and
Ferris.
Q&A
Q: Our daughter
A FINAL WORD:
In general, children
with craniofacial
conditions do not
necessarily need
counseling just be
cause they have thiB
condition. Some
youngste,.. are resil
ient and self-confi
dent and cope well
with the strenes
they encounter, even
though life JrUJy be
harder in SOIlU! ways
for them than for an
unaffected child. So
don't assume that
your child must be
experiencing self
doubt and worry
just because she has
a different face.
However, if you feel
you have reason to
be concerned about
her, or she requests
it, counseling could
be a very positive
growth experience
for your child.
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Forward Face
$--
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Address
City
Daytime Phone
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Zip
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Page 7
JJ
Your support will help change how a child sees the world
and how the world sees a child
Name
Address
_
State _ _ Zip
City
Daytime Phone
_
_
Send To:
Forward Face
317 East 34th Street
New York, NY 10016
Page 8