B
eing a parent can
be one of nature’s
greatest joys and ac-
complishments. But it also can be
overwhelming when hundreds of
questions pop up and the newborn
baby that you dreamed about does
not come home with an instruc-
tion manual.
DIAGNOSIS AT BIRTH
— by Nicole Forgione
A Local Mom Shares
Her Family’s Experience
There are thousands of book
titles at local stores and online
sites filled with tips and resources,
but is there truly a book for every
answer or situation? Perhaps more
concerning, what if the guidance,
support and answers you are seek-
ing are for a child with a disabil-
ity? How do you know which an-
swers or resources are the best for
your child?
Whether a parent knows pre-
birth or once a baby is born if
there are difficulties due to birth
and limb defects or conditions,
like Down syndrome or Cerebral
palsy, each situation is unique.
How medical diagnoses are an-
nounced and processed are not
the same as how they were shared
decades ago, when doctors would
inform a mother (and father) that
a child would need to be institu-
tionalized. People may now tend
to lean towards their own Internet
research; the range of scenarios may
now be openly discussed in parenting
forums.
These examples could include such
incidences as having babies be in the
neonatal intensive care unit (NICU) for
initial weeks or months, potential full-
time medical care for their lifetime or,
which is hoped for, a world of inclusion
no matter what a person’s abilities are.
Even with all of the medical advances,
there’s not a guaranteed way of knowing
if a child will be one of the worst or best
cases for severity of health problems,
or how a child succeeds in life. Being
told there is something wrong with your
baby is upsetting, whether it’s before the
birth or after.
Thankfully, there is medical science
on a family’s side, and an abundance of
diverse services available for children
born with various conditions.
Often times, news stories report that
parents must be “special moms or dads”
30 WNY Family April 2019
Did you know in advance
that Jack would be born with
Down syndrome?
Amy: We did not know in
advance. I was 33 when Jack was
born and 30 with our first child.
We opted not to have a blood
test, which could have detected
defects. I had an early ultrasound
where initially it was thought that
I might be having twins, but was
told there was some extra amni-
otic fluid and there was nothing to
be concerned about.
When I was seven months
pregnant, I was told the baby was
not gaining enough weight and
there was some type of blank spot
on the baby’s brain. I also had a
3D ultrasound and was told the
baby did not have Down syn-
drome.
It must have been a very
scary and emotional time.
for having a child with a disability or
“children with a disability are a bless-
ing.” Whether a news story elaborates
about conditions and life situations, each
person with a disability and each family
have their own story to share. Each story
may include positives and negatives, life
lessons, challenges and triumphs. Many
families who have similar connections
provide support to each other.
Here’s one summarized story — the
Monson family of four. Amy Monson
of West Seneca, NY, took time from her
busy day to share aspects of her family.
Amy, 46, and her husband, John, 47,
have two children together, Emma, 15,
and Jack, 13. Jack was born with Down
syndrome. One thing that Amy empha-
sized is that each person’s story is dif-
ferent — not all families are similar, but
she says her experience has been con-
sidered a positive one. Let’s hear more
about this particular family:
Amy: It was very upsetting
because we could not be told any-
thing definitive. It was extremely
stressful. The only thing we could
know for sure was the sex of the
baby. We didn’t find out the first
time with Emma, but decided to
this time. We found out it was a
boy and wanted to give him a
strong name that has been part of both of
our families for decades – Jack.
What happened when your baby
was born?
Amy: My husband and I decided it
would be best for delivery to be at Wom-
en’s and Children’s Hospital in Buffalo
(now John R. Oishei Children’s Hos-
pital). I had a C-section scheduled, but
went into labor three weeks early.
After Jack was born, his face turned
blue — so scary — and he needed oxy-
gen. While I was being taken care of,
Jack was brought to NICU for care and
tests.
How did you and your husband
find out about your child’s diagnosis
of Down syndrome?
Amy: While I was recovering, the
doctor asked John if he had heard about
Down syndrome. Plus, the medical staff
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