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Another Voice: Parents of Down syndrome babies need proper prenatal facts

By Emily Mondschein

What does “viable with life” mean on the most recent abortion rights legislation that was passed in New York State? I have real concerns about how OB-GYNs will interpret this language, given the broad umbrella this law encompasses. I want to share my prenatal diagnosis story.

OB-GYN: I’m sorry, your son has Down syndrome.

Me: Do you have any information or resources about Down syndrome so I can learn more?

OB-GYN: No, I’m sorry. Unfortunately, the prenatal testing companies do not include that information with the positive screens.

Me: What experience have you had with Down syndrome?

OB-GYN: Over the past five years, I’ve only delivered two babies with Down syndrome. Both died by the age of 2 and the mothers had a terrible quality of life. Up all night, no sleep, stress on the family.

According to the Centers for Disease Control and Prevention, the infant survival rate at 2 years of age was 88 percent for people with Down syndrome. This was taken in 2003. We have had major medical advances since this statistic, making the infant survival rate even higher.

OB-GYN: Also, puberty can be really rough on these people. My daughter had one in her swim class. She had her period. She smeared her pad all over the locker room walls. They should all get hysterectomies. The boys get really aggressive, too. They shouldn’t even be in schools.

Upon leaving our OB-GYN office, we had to question what type of existence our son would have based on the grim picture that was painted. Is it even worth bringing him into the world? It’s likely he may not even survive, given our OB-GYN’s past experiences.

People with disabilities are viable with life. Some type of protection needs to exist for families faced with making this decision. Many doctors may determine a child with Down syndrome to not be viable with life, based on outdated stigmas and a lack of education on current medical advances.

The expecting parents of New York State deserve to be equipped with education about these conditions that are detectable during the course of a pregnancy so that they may be able to make educated decisions. Many states have enacted the Down Syndrome Non-Discrimination Act to protect patients from this type of misinformation.

Until it becomes mandatory for noninvasive prenatal testing companies to include education on these conditions that can be detected during pregnancy or New York State can create clearer language in this piece of legislation, parents will continue to face this type of assault.

Emily Mondschein, of East Amherst, is co-founder of 21 Connect, focused on educating the community about individuals with Down syndrome.

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