National Foundati l Foundation for Fa cial Reco ... - Project Design

18 N AT I O N A L F O U N D AT I O N F O R FA C I A L R E C O N S T R U C T I O N
lower jaw, and improve breathing and speech. This
device improves a child’s appearance dramatically
and can be done at later ages as well. Hand Surgery:
Children with Aperts Syndrome are born with
syndactyly (webbing or fusion of hands and feet).The
hand surgeon separates fingers and can create a thumb
from the toe. Nerve Creation:A static sling uses a leg
muscle to enliven the immobilized face of a child with
Mobius syndrome.Vascular Anomalies: Schlerotherapy
can harden a vascular anomaly and inhibit growth,
while laser can lighten a deep red hemangioma.
A Nevus, a dark hairy patch, can be improved through
tissue expansion and excision and can be done at
any time. Orthodontics: Bone grafts replace bone
in the gum if growth was inhibited by a cleft palate.
Psychological: Children first become aware that they
are different during this period. Other children may
make fun of their face, and strangers may stare and
ask insensitive questions in their presence.The Social
Worker discusses financial, practical and emotional
issues with parents including school entry, academic
planning, educational needs, marriage conflicts and
sibling issues.The psychologist encourages parents
to speak to the school directly and may intervene
personally on behalf of the child. She may work
privately with the child or find a counselor in the
family’s immediate area who can help the child
through this period.
What Care is Received in Latency?
Ear Reconstruction: At age 9 or 10, children with
partial or malformed ears can have Stage1 ear
reconstruction. There is a huge change in a child
when they no longer have to hide their deformed
ear. Prosthetics: Prosthetic eyes, ears and other parts
of the face can be created at this age but must be
redone every two years because of facial growth and
wear on the device. Pharyngial Flap: At 8-10 years,
our cleft team orders a naso-endoscopy video to
ascertain if a pharyngeal flap (a flap at the back of
the throat to push against to create proper sounds)
is necessary or if additional speech therapy will
suffice. Hemangioma & Vascular intervention:
Persistent anomalies may need numerous procedures,
can defy medical intervention and cause appearance
and functional problems. Orthodontic: Braces and
palate expanders are used to remedy malocclusions
(uneven bites). Complicated dental and orthodontic
problems go hand-in-hand with almost all
craniofacial malformations. Psychological: The
psychologist may suggest behavioral and/or cognitive
testing for the child at this age. She interprets for
parents the lengthy neuro-psychology reports and
may become the emotional lifeline to parents who
are struggling at work, in their marriage, or with their
child. The Senior Social Worker continues to help
parents find resources and navigate the healthcare
system, often intervening in foster care situations,
abuse cases, housing, legal and visa issues not
specific to our patient population.
What Care is Received in Adolescence?
Secondary Surgeries: Final major surgical repairs
are done at this time if the child has reached full
skeletal growth. Children with multiple anomalies
go through a surgery every few years during this
period. Ear Reconstruction: The second stage of ear
reconstruction is done at this age. Orthodontics:
Orthodontics continues with retainers, braces, bone
grafts and dental implants. Psychological: The
teenage years are a very painful, sensitive time for
a child that has to wait until his/her face is fully
matured for final reconstruction. Children can
gain weight, refuse to attend school and become
increasingly isolated, uncommunicative and
depressed. Even if schoolmates have been inclusive in
earlier years, they will noticeably separate themselves
from a child with a facial difference as they concentrate
more intently on their social lives. The Psychologist is
able to differentiate normal “teen” behavior from
aberrant behavior that is likely the result of the child’s
facial difference. She may speak directly to the school
if the child is having difficulties emotionally or
academically or suggest ongoing local counseling,
working closely with that counselor to explain that
even though the child does not have a non life
threatening disease, their lives are dramatically
impacted nevertheless.
What Care is Received in Early Adulthood?
Final Orthodontics: a last secondary surgery or major
facial distraction is able to be scheduled. The face
must be fully developed before a final skeletal
reconstruction can be lasting. Psychological: The
psychologist may step in to keep a young person
feeling positive about their future, the Social worker
will help with job counseling and financial aid, and
the genetic counselor may be called in at this time
to talk to the teenager about his/her chances of
passing on the anomaly to his/her child.
C A B A R E T F O R M E D I C I N E
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