What I did after getting a fetal diagnosis of Down syndrome should be no one else's business | Opinion

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Not every parent is ready to raise a child with Down Syndrome.

 

State legislators in Harrisburg believe they are empowered to make decisions about what women can and cannot do during pregnancy. Legislation before both the state House and Senate would prohibit a woman to have an abortion because of a fetal diagnosis of Down syndrome.

This legislation – House Bill 2050 and Senate Bill 1050 – is unconstitutional, unenforceable, and wrong.

It is not possible to fully grasp what it is like to receive a prenatal diagnosis such as this unless you have experienced it — as my husband and I did during my second pregnancy.

We chose to have our daughter, Sophia, who is now a beautiful, charming 10-year-old living a full life and who happens to have Down syndrome. That was the right decision for us. And I would never want any politician to take away that decision from another pregnant woman.

When my husband, Mark, and I received the diagnosis that our daughter would have Down syndrome, it was the most difficult day of our lives, largely due to our ignorance and incomplete information provided to us. The doctors and genetic counselor shared messages of doom and gloom concerning possible health problems, a shortened life expectancy, and the emotional and financial toll it would take on our family.

It was a lot to absorb all at once.

But here is what our doctors failed to tell us. They didn’t tell us about the supportive community that exists for kids with Down syndrome and other cognitive disabilities and their parents. They didn’t tell us that the disability community would become an extended family that we would be proud to be a part of, and that membership would open us up to experiences and people we never would have known otherwise. They didn’t tell us about the resources that would be available to Sophia, and that many of her challenges could be successfully addressed through medical care, support, and services. They didn’t tell us that she would become a self-advocate, spreading a message of inclusion, respect, and belonging, and that we would stand by her every step of the way.

In short, they didn’t tell us the stories of children with Down syndrome living full lives, contributing to their communities with true friendships and a supportive social net. And they didn’t tell us about all of the joy our daughter would bring to our lives.

Giving birth to Sophia was the right choice for us. When we received her Down syndrome diagnosis, we chose the name Sophia because it means “wisdom.”  She has been our tiny teacher, and she has impacted our lives and others in beautiful, incalculable ways.

This was our decision to make. And we would not want a politician in Harrisburg making that choice for any other woman facing the same circumstances. A woman who receives a fetal diagnosis of Down syndrome, or any cognitive or other disability, is deserving of our compassion, not a command of what she must do in that situation. She is deserving of medical practitioners who are trained to give a prenatal diagnosis with current, accurate information and connections to our community so that she can make an informed decision without being in isolation.  Many Down syndrome groups have already created this information.

Unfortunately, children with Down syndrome have become another wedge to advance some legislators’ anti-abortion agenda. The government’s role in supporting people with disabilities should be to provide an equitable playing field in housing, education, health care, and other services. But politicians in Harrisburg and in Washington are willing to allow the safety net that supports many people with disabilities to wither on the vine.

Federal proposals to cap Medicaid expenditures, as well as a bill in the Pennsylvania General Assembly to impose work requirements on Medicaid recipients, would threaten the ability of people with disabilities to live in the community with independence and dignity. Meanwhile, the U.S. House passed a bill that would undermine the Americans With Disabilities Act and make it more difficult for people with disabilities to access public accommodations, like shops, clinics, and libraries.

Our daughter Sophia is a cherished part of our family who is loved and supported by her parents, her siblings, and our family and friends. We wouldn’t have it any other way. And we also understand that every pregnant woman faces her own unique circumstances and challenges. A woman’s decisions about her health care are best left with her, her loved ones, and her doctors, not politicians. I hope our state legislators will hear this message and defeat this legislation.

Jennifer Schrad writes from Bryn Mawr.