In mere months, pregnant American women might be able to learn if their fetuses have Down syndrome with a simple blood test. The test will be perfectly safe, eliminating the small, but real, chance of miscarriage that comes with our current diagnostic options. If these tests do become a routine part of obstetric care, thousands of expectant parents will be receiving a phone call from their healthcare provider each year with this message: your fetus has Down syndrome.

That will be a panicked moment, according to women studied in previous research. But, what should healthcare professionals say about Down syndrome? What does it really mean to have Down syndrome? Six years ago, Sue Levine, Dr. Rick Goldstein, and I set out to find the answer to that question. Rather than let Rahm Emmanuel or GQ Magazine have the final word on what life is like with Down syndrome, we spoke to the people who truly understand.

We mailed surveys to families around the country, and 3,150 mothers, fathers, brothers, sisters and people with Down syndrome responded. Here is just a sample of what we found.

• 99% of people with Down syndrome said they were happy with their lives
• 97% of people with Down syndrome liked who they are
• 99% of parents said they love their child with Down syndrome
• 5% of parents felt embarrassed by their child
• 97% of brothers/sisters, ages 9-11, said they love their sibling

*All of the surveys’ results have just been published in the American Journal of Medical Genetics.

Prenatal decisions about Down syndrome present profound and deeply personal challenges to expectant parents. But for the first time, data about real families is available and can be considered by couples when they receive the diagnosis.

Our study may be complete, but my colleagues and I want to know more. What has been your experience with people who have Down syndrome? Do these statistics resonate with you? Send your comments, pictures, and videos here.

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