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. 2
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. 3
Welcome to Holland Written by Emily Perl Kingsley 4
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? 5
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 non - existent” 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. 6
S. 1810 (110 th ) - 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=s110- 1810 7
Fact or Fiction Most babies with Down syndrome are born to older mothers? FICTION Source: National Down Syndrome Society, www.ndss.org 8
Down syndrome Most commonly occurring chromosomal condition 1 in every 691 babies is born More than 400,000 people living in United States Life expectancy has dramatically increased from 25 in 1983 to 60 today. Source: National Down Syndrome Society, www.ndss.org, Date accessed August 15, 2011 9
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 10
What is Down Syndrome? A few common physical traits of Down syndrome: • 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. 11
Fact or Fiction A registry exists of couples interested in adopting a child with Down syndrome. FACT 12 Down Syndrome Association of Greater Cincinnati has a National Adoption Registry of families wishing to adopt an infant with Down syndrome
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.2011- 1605) 13
Neonatal Period Considerations Cardiac (50%) Gastrointestinal (1-5%) Hypothyroidism Blood Disorders Respiratory Tract Infections Feeding Issues Hearing & Vision 14
Health Care & Development Early Intervention: Critical in child development Physical therapy, occupational therapy, and speech therapy Government programs or private sector 15
Teens and Adulthood Full of Possibilities Educational Setting Careers Placement/Housing 16
Survey: Honest responses from those that truly understand Down syndrome 99% of parents love their 97% brothers/sisters (9- 99% Happy with lives child with DS 11) love their sibliings Skotko, BG, Levine SP, Goldstein R. 2011. American Journal of Medical Genetics. 17
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. 18
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 19
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 20 Source: Skotko et al. 2009
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) 21
Parent Reactions & Questions 22
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 23
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 21 st ), Buddy Walk (fundraiser) Lending library of books related to Down syndrome 24
DSSW Outreach Outreach Referral Process Referral is made to DSSW Outreach Co-Coordinators via email or phone call: outreach@dsswichita.org 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 25
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