New Study Details Development Benchmarks for People with Down Syndrome

It’s the 10-week appointment. Readying the fetal Doppler, your Ob-Gyn reassures you not to worry if you don’t hear a heartbeat immediately. Your body grows tense and your breath escapes you as the worst-case scenario crosses your mind for the first time.

It’s colder in the room than you thought. After a few tense moments, your child’s fast, rhythmic heartbeat whooshes in and out of the static. The relief sets in. Your Ob-Gyn reassures you that everything sounds normal and reminds you that you won’t need to come in again for another four weeks.

Feverishly keying into the chart, your Ob-Gyn casually invites you to learn your child’s sex earlier and to get a jump on detecting abnormalities. Meanwhile, she slips you an information packet about a low-cost blood test that provides early detection of your baby’s sex, risk of Down syndrome, and other chromosomal abnormalities.

The tension creeps back. Did my Ob-Gyn hear something unusual? Is my child at risk? Is it my fault? Does everyone else pay for the blood test? Am I a bad parent if I don’t do the test? Am I a bad parent if I do the test? Would the test results change anything?

Your phone rings, the lab results came back, and your child is at risk for Down syndrome.

As your Ob-Gyn’s voice fades, new questions begin to swirl. Will my child be okay? Will my child be happy? Will my child be able to walk, talk, and socialize? Will my child have friends? What will happen to my child if I pass away?

In the U.S., 206,000 people have Down syndrome (“DS”) and 5,000 babies with DS are born each year.[1] Blood tests to screen for the condition continue to rise in popularity. Physicians and parents are afforded unprecedented insight into an unborn child’s prenatal health and health risks. Parents who receive a DS diagnosis for their unborn child will undoubtedly have questions and concerns.

On January 2, 2019, Massachusetts General Hospital published a new study that provides meaningful answers for expectant parents of children with a DS diagnosis.[2] The largest of its kind, the study analyzes survey results from 2,658 families in the U.S. and the Netherlands. Moreover, the U.S. and the Netherlands are quality benchmarks because they provide similar supports and services to children and to adults with DS.

The study asked parents to assess 11 functional skills that closely mirror activities of daily living and instrumental activities of daily living. Moreover, the results provide actual benchmarks to assist treatment providers and to encourage expectant parents.

1. Walking. The majority of U.S. children with DS walk by 25 months. Among the Dutch, 36% of children with DS walk reasonably well by age two and 70% by age three. Overall, the difference in walking disappeared by age five.

2. Speaking. The majority of U.S. and Dutch children with DS spoke in a comprehensible manner by age 12.

3. Reading. 48% of U.S. adults and 63% of Dutch adults with DS read reasonably well by ages 21 to 30.

4. Writing. 37% of U.S. adults and 52% of Dutch adults with DS wrote reasonably well by ages 21 to 30.

5. Eating. Nearly all U.S. and Dutch adults with DS ate reasonably well by adulthood.

6. Meal preparation. 45% of U.S. adults and 30% of Dutch adults with DS prepared their own meals by age 31.

7. Self-hygiene. The majority of children with DS took reasonable care of their own self-hygiene by 13 years of age. The number rose to about 70% by ages 21 to 30.

8. Employment. 71% of U.S. adults and 65% of Dutch adults with DS worked jobs by age 31.

9. Dating and going out. 25% of US adults dated by age 31. 61% of Dutch adults would go out (including with friends) by age 31.

10. Independent travel. 30% of U.S. adults and 17% of Dutch adults with DS traveled independently by age 31.

11. Independent living. 34% of U.S. adults and 30% of Dutch adults with DS lived independently by age 31.

The study’s findings underscore the importance of Mark Bradford’s research and proposals in “Improving Joyful Lives: Society’s Response to Difference and Disability.” In the report, Mr. Bradford highlights that individuals and families living with DS are unusually happy. In fact, 99% of people with DS are happy with their lives[3]; 97% of people with DS like who they are[4]; 99% of parents said they love their child with DS[5]; and 97% of siblings ages 9 to 11 said they love their sibling with DS.[6] Overwhelmingly, reports continue to show that individuals and families living with DS are satisfied with their lives and that early intervention improves functional skills.

In sum, these findings represent a tremendous leap forward for parents, physicians, therapists, and educators. Now expectant parents can obtain powerful information about the quality of life for persons with DS. The study empowers expectant parents and treatment providers to provide targeted therapeutic and medical services as early interventions to maximize functional skills.

For more information, please check out the entire study here.

Charles A. “Chuck” Donovan is president of the Charlotte Lozier Institute. 

[1] de Graaf, G., Buckley, F., & Skotko, B. G. (2016a). Estimation of the number of people with Down syndrome in the United States. Genetics in Medicine, 19, 437–447.

[2] de Graaf G, Levine SP, Goldstein R, Skotko BG. Parents’ perceptions of functional abilities in people with Down syndrome. Am J Med Genet Part A. 2018;1–16. https://doi.org/10.1002/ajmg.a.61004

[3] Brian G. Skotko, Susan P. Levine, Richard Goldstein, “Self Perceptions from People with Down Syndrome.” American Journal of Medical Genetics Part A 155 (2011) 2360–2369.

[4] Id.

[5] Id.

[6] Id.