DIAGNOSIS AT BIRTH
P
arents are
encour-
aged to ask
their team of doctors
many questions to
help receive the prop-
er care for their child
with a disability, and
to have questions an-
swered in a way that
is clear. Physicians
and medical staff also
need to be clear when
they talk with parents
and patients, as well
as to use sensitiv-
ity while explaining
medical procedures
and processes.
— by Nicole Forgione
What
train-
ing/education is
provided to doc-
tors/nurses
on
how to relay a di-
agnosis?
Dr. Zambron:
Physicians are trained
on how to approach
families, often as part
of rotations in new-
born care, obstetrics,
or genetics electives.
Medical school fac-
ulty teach ‘how to
break bad news’ to
residents and medi-
cal students with
both formal lectures
and clinical encoun-
ters. There are many strong emotions,
which are expected when delivering dif-
ficult information to parents. Many ge-
netic specialists are known to drive in at
all hours to hospitals to counsel parents,
especially if birth defects or disabilities
were not evident with prenatal testing.
A Physician’s
Perspective
For another re-
source from a medical professional’s
point of view, Mark R. Zambron, MD,
clinical assistant professor of Internal
Medicine and Pediatrics of Department
of Medicine for University at Buffalo Ja-
cobs School of Medicine and Biomedi-
cal Sciences, shares some guidance for
parents who have children with develop-
mental disabilities:
What happens before birth
through all the prenatal testing
that’s currently available?
Dr. Zambron: Through prenatal
testing, parents are confronted about po-
tential diseases and developmental dis-
abilities. Depending on the results and
potential disabilities, parents may be ad-
vised to see specialists and to consult with
the Robert Warner Rehabilitation Center
at Oishei Children’s Hospital in Buffalo.
Besides
physicians,
who
steps in to counsel parents, di-
rect a course of treatment or
services? Who provides support
and education?
Dr. Zambron: Most conditions
have local and/or national support
groups available to provide helpful in-
formation. Genetic counselors are ex-
tremely beneficial to families. The Rob-
ert Warner Rehabilitation Center, as well
as Strong Memorial Hospital in Roches-
ter, have numerous resources.
How important is it for par-
ents to receive counseling?
Dr. Zambron: Counseling for par-
ents is critical — it is important to de-
scribe the probable impact of a disorder
or syndrome throughout their children’s
lives and differences in development.
When parents learn of a diagnosis, there
may be reactions akin to the stages of
grieving. It is similar to losing a family
member — you deal with strong emo-
tions and must manage different expec-
tations.
A Program of The Center For
Handicapped Children, Inc.
Together
We Make a
Difference
Do you advise parents on any
particular recommendations?
Dr. Zambron: Planning ahead is
very critical as a child grows. This in-
cludes from starting and transitioning
from Early Intervention to school, and
from young adulthood to employment.
Every effort should be made to strive for
helping them raise a child that becomes
as independent of an adult as possible.
It is important to know what resources
continued on page 47
• Providing educational and therapeutic
services to students with multiple
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• No tuition or transportation
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1085 Eggert Road
Amherst, NY 14226
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Learn More:
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April 2019 WNY Family 31