When you learn your child has Down syndrome, you may experience a range of emotions, including anger, fear, worry, sorrow and guilt. You may not know what to expect, and you may worry about your ability to care for a baby with a disability. The best antidote for fear and worry is information and support.
Consider these steps to prepare yourself and to care for your child:
April 19, 2014
- Find a team of trusted professionals. You'll need to make important decisions about your child's education and treatment. Build a team of health care providers, teachers and therapists you trust. These professionals can help evaluate the resources in your area and explain state and federal programs for children with disabilities.
- Seek out other families who are dealing with the same issues. Most communities have support groups for parents of children with Down syndrome. You can also find Internet support groups. Family and friends can also be a source of understanding and support.
- Expect a bright future. Most people with Down syndrome live with their families or independently, go to mainstream schools, read and write, and have jobs. People with Down syndrome can live fulfilling lives.
- What is Down syndrome? National Down Syndrome Society. http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/. Accessed Nov. 14, 2013.
- Down syndrome fact sheet. National Down Syndrome Society. http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/. Accessed Nov. 14, 2013.
- Learning about Down syndrome. National Human Genome Research Institute. http://www.genome.gov/19517824. Accessed Nov. 14 2013.
- Down syndrome. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/down-syndrome. Accessed Nov. 14, 2013.
- Facts about Down syndrome. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/birthdefects/DownSyndrome.html. Accessed Nov. 13, 2013.
- Ostermaier KK. Down syndrome: Clinical features and diagnosis. http://www.uptodate.com/home. Accessed Nov. 14, 2013.
- Messerlian GM, et al. Overview of prenatal screening and diagnosis of Down syndrome. http://www.uptodate.com/home. Accessed Nov. 14, 2013.
- American College of Obstetricians and Gynecologists (ACOG) Committee on Practice Bulletins — Obstetrics. ACOG Practice Bulletin No. 77. Screening for fetal chromosomal abnormalities. Obstetrics & Gynecology. 2007;109:217. Reaffirmed 2011.
- Frequently asked questions. Pregnancy FAQ094. Genetic disorders. American College of Obstetricians and Gynecologists. http://www.acog.org/~/media/For%20Patients/faq094.pdf?dmc=1&ts=20131118T2245557486. Accessed Nov. 14, 2013.
- How do health care providers diagnose Down syndrome? Eunice Kennedy Shriver National Institute of Child Health and Human Development. https://www.nichd.nih.gov/health/topics/down/conditioninfo/Pages/diagnosed.aspx. Accessed Nov. 18, 2013.
- Ghidini A. Chorionic villus sampling: Risks, complications, and techniques. http://www.uptodate.com/home. Accessed Dec. 4, 2013.
- Hoecker JL (expert opinion). Mayo Clinic, Rochester, Minn. Dec. 5, 2013.
- Patterson MC (expert opinion). Mayo Clinic, Rochester, Minn. Dec. 22, 2013.
- Harms RW (expert opinion). Mayo Clinic, Rochester, Minn. Jan. 16, 2014.
- American College of Obstetricians and Gynecologists Committee on Genetics. Committee Opinion No. 545: Noninvasive prenatal testing for fetal aneuploidy. Obstetrics & Gynecology. 2012;120:1532.
- Second trimester: Cordocentesis (percutaneous umbilical blood cord sampling, PUBS). Lab Tests Online. http://labtestsonline.org/understanding/wellness/pregnancy/second-trimester/cordo/. Accessed Jan. 17, 2014.