Down Syndromein Florida

Down syndrome is…a genetic condition that occurs in about 1 of every 769 babies born inFlorida and in about 1 of every 700 babies born in the United States.Babies with Down syndrome are born with three, instead of two, copiesof chromosome number 21. The extra chromosome 21 tends to affecteach person with Down syndrome in different ways. Throughout theirlives, individuals with Down syndrome may need tailored support tomeet their unique developmental, educational, medical, and socialneeds.

Children with Down syndrome are athigher risk for…uHearing loss (75%) uObstructive sleep apnea (50–75%)uEar infections (50–70%)uEye diseases (60%) like cataracts (15%) and issues requiring glasses (50%)uHeart defects present at birth (50%)uIntestinal blockage requiring surgery (12%)uHip dislocation (6%)uThyroid disease (4–18%)uAnemia (3%) and Iron deficiency (10%)uLeukemia (1%) and Hirschsprung disease (<1%) later in life

Individuals with Down syndrome usually have some of these conditionsduring their lifetime. The majority of these conditions, includingconditions of the heart and digestive problems, can be surgically treatedduring the first years of life.

Support with caring for your child…Families can benefit from programs that help identify infants andchildren at risk for developmental delays. For children, birth to 36months of age, Early Steps, Florida’s early intervention program helpsfamilies and others involved in the child’s life develop the needed skillsto nurture their child’s growth and development.

Visit www.cms-kids.com/families/early_steps/early_steps for moreinformation.

Most families of children with Down syndrome find connecting withother families of children with Down syndrome helpful. Please see thelist of parent support groups on the reverse side.

More people with Downsyndrome are living happy,

productive lives well intoadulthood

95% of babies born with Downsyndrome happen to families

who have no history of thecondition

All women are at risk of havinga baby with Down syndrome andwomen over the age of 35 have a

significantly higher risk

About 280 babies are diagnosedwith Down syndrome each year

in Florida

Florida Department of Health, Florida Birth Defects Registry

Florida Department of Health, Florida Birth Defects Registry

Down Syndromein Florida

Children, adolescents andadults with Down syndrome willneed specialized assistancewhen…uEntering school for the first time ormoving to middle and high schooluTransitioning to adulthood and—Finding an adult doctor—Identifying a guardian—Renting an apartmentuDeciding/trying to live aloneuBeing in adult relationshipsuStarting families of their ownuOutliving their caregivers

Many students with Down syndromegraduate from high school, and go on toreceive higher education includingattending college and working in jobswhere they are valued.

Additional state resources for familiesaffected by Down syndrome:uFlorida Birth Defects Registry (FBDR): www.fbdr.org,(850) 245-4444uChildren’s Medical Services (CMS): www.cms-kids.comuFlorida Directory of Early Childhood Services:www.centraldirectory.org

For parent support groups and advocacyorganizations in your area, visit:uCentral Florida Parent Center: www.cflparents.orguDown Syndrome Association of Central Florida:www.dsacf.orguDown Syndrome Foundation of Florida:www.dsfflorida.orguHope Haven: www.hope-haven.org uNational Down Syndrome Society (lists support groupsthroughout Florida): www.ndss.orguThe Arc-Florida: www.arcflorida.org

For more information visit:uAmerican College of Medical Genetics:www.acmg.net/GIS/Default.aspxuAmerican Academy of Pediatrics: www.aap.orguDown Syndrome Research and Treatment Foundation:www.dsrtf.org

uFlorida’s Early Steps Program: www.cms-kids.com/families/early_stepsuMarch of Dimes: www.marchofdimes.comuNational Birth Defects Prevention Network:www.nbdpn.orguNational Center For Prenatal and Postnatal DownSyndrome Resources: downsyndromediagnosis.orguNational Center on Birth Defects and DevelopmentalDisabilities: www.cdc.gov/ncbddduNational Down Syndrome Congress:www.ndsccenter.orguNational Dissemination Center for Children withDisabilities: www.nichcy.orguNational Society of Genetic Counselors: www.nsgc.org

Down syndrome can be detected prenatally andpostnatally. If a family receives a diagnosis of Downsyndrome it is important that an echocardiogram beperformed to detect if a heart defect is present. 50%of children with Down syndrome have a heart defectand about 1/3 may require surgery. Families with ahistory of Down syndrome or other birth defectsshould seek guidance from a genetic counselor beforeplanning a pregnancy to assess their risk ofrecurrence.

Research is currently being conducted to improveoutcomes for people with Down syndrome. Infants,children and adults with Down syndrome will benefitfrom programs that help to improve their physicaland mental functioning disabilities. These includespeech, physical and occupationaltherapy, exercise for physicalcoordination, receiving extra help orattention in school and having a workcoach to help them on the job.