DSSW Outreach Presentation - 4-1

Changing Lives:
Relating to and supporting
families receiving a Down
syndrome diagnosis
Presented by:
Down Syndrome Society of Wichita
(DSSW)
Introduction:
What is the DSSW?
The Down Syndrome Society of Wichita (DSSW) is a not
for profit 501c3 organization and a local chapter of the
National Down Syndrome Society (NDSS).
Our mission is to enhance the lives of individuals with
Down syndrome and their families by providing
them with support and resources and by raising
public awareness about Down syndrome.
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Goals & Objectives
 To improve awareness of
resources, locally &
nationally, to support new
families
 To provide a deeper
understanding of Down
syndrome and what it is like
to raise a child with Down
syndrome.
 To provide pre-emptive
guidance on delivering a
diagnosis to support a
parents’ emotional needs.
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Welcome to Holland
Written by Emily Perl Kingsley
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Survey
 Have you had experience – medically or personally
with persons with Down syndrome?
 Have you ever had to deliver a diagnosis of Down
syndrome to a family?
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Education of Medical Professional
Self-reporting
Significant negative correlation between years in practice and and
rating of residency training
81% or medical students report they are not getting clinical training regarding
individuals with Down syndrome.
58% of medical school deans say such training is not priority
45% of ACOG fellows and junior fellows rated their residency training
regarding prenatal testing for fetal aneuploidy as “barely adequate or nonexistent”
28% of ACOG fellows felt “well-qualified” in general prenatal genetic
counseling.
Screening for Down Syndrome: Practice Patterns and Knowledge of Obstetricians and Gynecologists
Cleary-Goldman, Jane; Morgan, Maria A.; Malone, Fergal D.; Robinson, Julian N.; D’Alton, Mary E.; Schulkin, Jay
Obstetrics & Gynecology. 107(1):11-17, January 2006.
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S. 1810 (110th) - Prenatally and Postnatally
Diagnosed Conditions Awareness Act
It is the purpose of this act to --(1) increase patient referrals to providers of key support services
(2) strengthen existing networks of support
(3) ensure that patients receive up-to-date, evidence-based
information about the accuracy of the test.
Source: Govtrack.us. September 27, 2008
http://www.govtrack.us/congress/billtext.xpd?bill=s110-1810
Prenatally and Postnally Awareness Act - http://www.govtrack.us/congress/billtext.xpd?bill=s1101810
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Fact or Fiction
Most babies with Down
syndrome are born to
older mothers?
FICTION
Source: National Down Syndrome Society,
www.ndss.org
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Down syndrome

Most commonly occurring
chromosomal condition


1 in every 691 babies is born

Life expectancy has
dramatically increased from
25 in 1983 to 60 today.
More than 400,000 people
living in United States
Source: National Down Syndrome Society,
www.ndss.org, Date accessed August 15,
2011
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What is Down Syndrome?
 Three forms of Down syndrome:
Standard Trisomy 21 (90-95%)
Translocation (3-5%)
Mosaicism (2-5%)
 Ave. age of diagnosis – 18 mo to 3 year
 Support – International Mosasic Down Syndrome Asso.
 www.IMDSA.org
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What is Down Syndrome?
A few common physical traits of Down syndrome:
•
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•
•
•
•
•
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Hypotonia
Simian Crease
Microcephaly
Upward slant to eyes
Flatter nasal bridge
Small stature
Ears set slightly lower
Sandal Toes
People with Down syndrome experience cognitive delays, but
the effect is usually mild to moderate. They attend school,
work, function independently, and contribute to society.
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Fact or Fiction
A registry exists of couples interested
in adopting a child with Down
syndrome.
FACT
Down Syndrome Association of Greater Cincinnati has a National Adoption Registry of families
wishing to adopt an infant with Down syndrome
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Health Supervision for Children With
Down Syndrome
 American Academy of
Pediatrics
 Pediatrics Vol. 128 No.
2 August 1, 2011
pp. 393 -406
(doi:
10.1542/peds.20111605)
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Neonatal Period Considerations
Cardiac (50%)
Gastrointestinal (1-5%)
Hypothyroidism
Blood Disorders
Respiratory Tract Infections
Feeding Issues
Hearing & Vision
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Health Care & Development
Early Intervention:
 Critical in child
development
 Physical therapy,
occupational therapy, and
speech therapy
 Government programs or
private sector
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Teens and Adulthood
Full of Possibilities
 Educational Setting
 Careers
 Placement/Housing
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Survey:
Honest responses from those that truly
understand Down syndrome
99% of parents love their
child with DS
99% Happy with lives
97% brothers/sisters (911) love their sibliings
Skotko, BG, Levine SP, Goldstein R. 2011. American Journal of Medical Genetics.
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Presenting the
Diagnosis
Research shows that
mothers retain with great
accuracy the first words
their physician uses when
giving a diagnosis.
Source: Skotko, Brian G., P.G. Krishnani,
G.T. Capone, 2009. Prenatal Diagnosis of
Down Syndrome: How Best to Deliver the
News. American Journal of Medical
Genetics.
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Presenting the Diagnosis
Diagnosis in person and with baby present if appropriate
Begin with positive words; avoid negative connotations
Baby First, Diagnosis Second
Provide up-to-date information & resources
Provide connection to parent support
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Fact or Fiction
Connecting expectant parent(s) with other
parent(s) is the most helpful measure a
physician can do during this first
conversation.
FACT
Source: Skotko et al. 2009
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More Alike Than Different
I wish I would have known…
I wish I'd known life wouldn't be defined by the myths and misconceptions I had about
Down syndrome, but instead, it would be as "normal" as normal gets, and my son
would fill my life with love and joy beyond comprehension or measure.
—Sandy, mom to Lucas (19 months)
I wish I’d known that children with Down syndrome are just as loveable, kissable,
snotty, tantrum-throwing, bubble-blowing, huggable and milestone-making as their
siblings.
—Ava, mom to Daniel (3 1⁄2 years)
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Parent Reactions & Questions
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Resources for
Families & Physicians
 Down Syndrome Society of Wichita
 National Down Syndrome Society
 National Down Syndrome Congress - Physicians Guide
-Scenarios for presenting a diagnosis pre- and post-natally
 Lettercase
-digital/printed copies free for physicians
 Brighter Tomorrows
-English & Spanish
 Down Syndrome Pregnancy
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What is the DSSW?
 Frequent meetings and social events
 Support and resources for new and expecting parents
and medical professionals
 Annual Social Events – Annual Family Picnic, World DS
Day Celebration (March 21st), Buddy Walk (fundraiser)
 Lending library of books related to Down syndrome
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DSSW Outreach
Outreach Referral Process
Referral is made to DSSW Outreach
Co-Coordinators via email or phone call:
[email protected]
Lisa Umbehr & Susan May
Outreach volunteer makes initial contact and
delivers basket with resource materials, gift,
and books
New family added to roster to receive DSSW
mailings
Follow up with new family for 6 months if
desired
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