Down Syndrome is the most common chromosomal disorder that new parents face every year. Since 1979, the number of children born with Down Syndrome has risen by more than 30%.
Every 1 in 700 babies born in the United States today will be diagnosed with Down Syndrome in some level of severity.
There are certain risk factors that are known to affect the chances that a chromosomal disorder will be present in a newborn. Down Syndrome becomes more likely as the age of a mother increases. Mothers who have a newborn when they are 40+ have nearly 12x the risk of having a child born with this disorder compared to mothers who have a newborn between the ages of 20-24.
Medical Advancements Have Improved Quality of Life
- The average life span of a newborn with Down Syndrome in the US in 1960 was about 10 years. In data from 2007, the average life span was 47 years.
- For a reason that is unknown, children with Down Syndrome who are born to African-American/Black mothers have a lower chance of survival beyond 1 year when compared to Caucasian children.
- Children with Down Syndrome are more likely to have a congenital heart defect than newborns in the general population. Children with this defect are 5x more likely to not reach their first birthday.
- Between 1983 and 2003, about 93% of babies born with Down Syndrome survived to one year of age. In the same time period, about 88% of babies born with Down Syndrome survived to 20 years of age.
- These advancements come at a cost. When using data collected from private insurance carriers, the healthcare costs of children 0-4 with Down Syndrome are 12x higher when compared to children of the same age without the disorder.
- The successes that have come about in the last 50 years are remarkable considering that Down Syndrome is the least funded major genetic condition for research.
Having a child born with Down Syndrome can be a blessing. It can also be a very costly experience, especially for households that are either self-employed or running healthcare insurance that has a high deductible. Screening tests are available in advance to determine the likelihood of this disorder being present and is often recommended for all parents. The information is sometimes used to question the viability of the pregnancy, but is also used to begin the financial planning process. Down Syndrome can affect anyone from any race, any income level, and any age demographic even though it is more prevalent in older mothers.
Challenges The Down Syndrome Demographics Face
- About 40% of households that have at least one child with Down Syndrome state that they face financial problems on a regular basis.
- 3 out 5 households with children who have Down Syndrome use home-care methods for treatment, including feeding and breathing equipment, to cut down on financial costs.
- About 40% of households who have a child with Down Syndrome have at least one member of the family stop working to help care for the child, further reducing the income being brought in.
38% of US citizens know at least one person who has been diagnosed with Down Syndrome. This percentage is expected to increase as the current population is able to take advantage of evolving medical practices which further improve the length and quality of life for this demographic. The global life span may be 47 years on average, but in the United States it is currently at 60 years. With more newborns being diagnosed with this Trisomy 21 disorder, this demographic will become an important part of our society.
What is Changing For the Down Syndrome Demographic
- Nearly 40% of those born with Down Syndrome fall into the mild intellectual disability category in terms of IQ, averaging a score between 50-70.
- About 1% of those in this demographic have an IQ that is above 70.
- Individuals born with Down Syndrome are protected by law in the US and are required to receive a free public education.
- With supplemental services, individuals with Down Syndrome are able to begin living on their own, form their own relationships and marriages, and even have their own children.
- It is considered rare for an individual with Down Syndrome to have cardiovascular disease or a solid tumor malignancy.
- In survey after survey, the general population believes that everyone is better off when everyone pitches in to help those with this disorder.
Much of the information that is online about Down Syndrome isn’t entirely accurate. A commonly quoted statistic is that 90% of mothers who find out their child has this Trisomy 21 issue will choose to have an abortion. The real figure is about half of this quoted statistic. With further research and improved supports for independent living, having Down Syndrome will continue to be less of a stigma than in days before.