Prescription Parents (PP), a local Boston organization run by
volunteers,
has helped parents in Massachusetts, New Hampshire, Vermont, Maine,
Rhode
Island, and Connecticut for over 40 years. We have now merged with
Foundation
for Faces of Children (FFC), a New England-based, not-for-profit
organization,
which provides patients and families with the most accurate,
up-to-date,
and accessible information about facial conditions (including cleft
lip,
cleft palate, and other head and facial differences ) and advocates
for
the best care possible for these children. Please check out
their
website at http://www.facesofchildren.org/
Their
contact
number
is 617.355.8299.
Prescription Parents has attempted to meet the needs of parents
of
children
who were born with clef lip and cleft palate by helping each other
and
by offering resource material on specific areas of concern.
Presceiption Parents still meets on an as-needed basis; and our
information could still prove helpful. Hence we are keeping
this
information online.
The Q&A's below are, as before, in the present tense.
They
are included here because others interested in setting up similar
organizations
might find it helpful to know how Prescription Parents was set up.
Q. Who can be a member?
A. All parents of children born with these or related conditions,
or
anyone interested in cleft lip and palate is welcome. There is a
suggested
membership fee to defray printing, postage, etc.
Q. Does Prescription Parents endorse specific treatment
centers
of
plans?
A. Prescription Parents does not endorse any hospital or medial
treatment,
but only encourages parents to seek competent medical care from
specialists
with whom they feel comfortable. Professionals from all the major
treatment
areas serve on our Medical Advisory Board.
Q. Is Prescription Parents affiliated with a national group?
A. Prescription Parents is a member of the National Cleft Palate
Association.
Prescription Parents is one of the oldest continuously operating
groups
and also one of the largest groups in the United States.
Q. Why the name 'Prescription Parents'?
A. We want to be "good medicine" for our children. Our children,
like
all children, have many needs and require support and guidance. We
believe
our children's special needs are best served when parents and
professionals
work in a cooperative partnership.
Treatment of Cleft Lip & Palate
The medical treatment for a child with cleft lip and/or palate
usually
involves several medical specialists and auxiliary services.
Fortunately,
with professional care children born with cleft lip and palate are
successfully
habilitated. The center, hospital, or clinic where your child is
treated
will refer you to various specialists as needed. Prescription
Parents
has
supplementary literature available; if you wish to receive some
informational
material, indicate so on the membership form (below) or call
XXX-XXX-XXXX.
Briefly, the following specialties may be involved in the
correction
of your child's cleft. Since each cleft is unique and presents a
different
set of conditions, your child's doctor or team is best able to
chart
the
course for you.
Prescription Parents urges you to ask questions if you are
unclear
about
any area of your child's treatment. The specialists understand
that
this
information probably is new to you and welcome your interest.
Also,
your
understanding of and confidence in the treatment reassures family
and
friends
and makes them comfortable with the baby and his condition. Later,
your
knowledge and assurance is beneficial to the child.
1 SURGERY
Your baby should be evaluated by a plastic surgeon soon after
discharge
from the maternity hospital. The surgeon will be able to give you
general
guidelines as to the kind of surgery required and the timing. Usually
the lip and palate are repaired in several operations and occur anywhere
from six weeks of age (for the lip) to eighteen months (for the
palate)
depending upon the individual infant.
2 OTOLARYNGOLOGY
From infancy your baby born with a cleft palate should be followed
by a
specialist in ear, nose and throat care. Often children with clefts
of
the palate are susceptible to a problem with fluid in the middle ear
space
which is easily correctable, but which must be monitored to assure
normal
hearing, as well as to encourage normal speech and language
development.
3 DENTISTRY
Of course, oral hygiene is as important for the child born with
cleft
palate
as for any other; the older child is followed carefully as the tooth
and
gum structure often requires the specialties of prosthodontia and
orthodontia
to improve speech and chewing abilities.
4 SPEECH AND HEARING
Initially the parent receives counseling about possible problems and
corrective
exercises for the young child. Later, a therapy program, if needed,
may
be determined for the child. With the advent, in 1974, of the
Special
Education
Law, Chapter 766, many of these services are provided through the
local
school system from age three; Prescription Parents recommends that
all
services provided through the school be carefully coordinated with
the
medical treatment center.
5 GENETIC COUNSELING
The parents, and eventually your older child, usually have many
questions
about the causes, occurrence, etc. of clefts. A genetic counselor
can
best
answer these and help families evaluate their situations. You might
check
with your child's doctor for a referral or Prescription Parents
would
be
happy to provide you with a list of those counselors known to us in
the
Boston area.
ACTIVITIES AND SERVICES
Newborn Program
Public Education
Informational Meetings
Social Events for Families
Advocacy Positions
Printed Materials
MEDICAL ADVISORY BOARD
Prescription Parents has been most fortunate and is grateful for the
expertise
and advice of physicians and specialists who have agreed to serve on
the
Medical Advisory Board. Their active participation at the meetings,
in
public statements and appearances, and in other ways, as well as
their
endorsements have been deeply appreciated.
Our Medical Advisory Board is comprised of specialists form the
fields
of: Surgery, Otolaryngology, Dentistry, Speech Pathology and
Audiology,
Pediatrics, Genetics, Psychiatry and Psychology.