Living with Down Syndrome

Key points

  • Down syndrome is the most common chromosomal condition diagnosed in the United States.
  • Families and healthcare providers in the United States have learned over time how to improve care for people living with Down syndrome.
  • Children with Down syndrome are living longer, many into their adult years.
  • Ongoing, appropriate medical care can help children and adults with a Down syndrome live as healthy lives as possible.
Teen with Down syndrome looking at their bike.

Down syndrome in the United States

Each year, about 5,700 babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 in every 640 babies.

Life expectancy

The life expectancy of people with Down syndrome increased dramatically between 1960 and 2007.1 In 1960, on average, persons with Down syndrome lived to be about 10 years old. In 2007, on average, persons with Down syndrome lived to be about 47 years old.

Many factors can affect how long a person with Down syndrome lives. Babies born with a very low birth weight or a congenital heart defect are less likely to survive their first year.23 There are also racial disparities, with Black infants having a lower survival past the first year. More research is needed to help understand why.

Other health conditions

Between 50–65% of all babies born with Down syndrome are also born with a congenital heart defect.24 Babies with Down syndrome can be affected by a wide variety of heart defects. Many of these conditions will need surgery, while some milder conditions might go away on their own as the child grows.

Compared to children without Down syndrome, children with Down syndrome are at higher risk for certain other medical conditions.5 Some of the most common conditions include:

  • Hearing loss (up to 75% may be affected)
  • Obstructive sleep apnea, where a person's breathing temporarily stops while asleep (between 50–75%)
  • Ear infections (between 50–70% may be affected)
  • Eye diseases, like cataracts (up to 60%)
  • Eye issues requiring glasses (50%)
  • Heart defects present at birth (between 50–65%)
  • Alzheimer's disease
  1. Presson AP, Partyka G, Jensen KM, Devine OJ, Rasmussen SA, McCabe LL, McCabe ER. Current estimate of Down Syndrome population prevalence in the United States. J Pediatr. 2013 Oct;163(4):1163-8.
  2. Kucik JE, Shin M, Siffel C, Marengo L, Correa A; Congenital Anomaly Multistate Prevalence and Survival Collaborative. Trends in survival among children with Down syndrome in 10 regions of the United States. Pediatrics. 2013 Jan;131(1):e27-36.
  3. Wright LK, Stallings EB, Cragan JD, Pabst LJ, Alverson CJ, Oster ME. Narrowing the Survival Gap: Trends in Survival of Individuals with Down Syndrome with and without Congenital Heart Defects Born 1979 to 2018. The Journal of Pediatrics. 2023 Sep 1;260:113523.
  4. Heinke D, Isenburg JL, Stallings EB, Short TD, Le M, Fisher S, Shan X, Kirby RS, Nguyen HH, Nestoridi E, Nembhard WN. Prevalence of structural birth defects among infants with Down syndrome, 2013–2017: A US population-based study. Birth defects research. 2021 Jan 15;113(2):189-202.
  5. Bull MJ; Committee on Genetics. Health supervision for children with Down syndrome. Pediatrics. 2011 Aug;128(2):393-406. doi: 10.1542/peds.2011-1605. Epub 2011 Jul 25. Erratum in: Pediatrics. 2011 Dec;128(6):1212.