Medical outreach as cosmic justice

Your author with members of the Down Syndrome Family Connection, Bloomington, Indiana

This past weekend, I trained the Bloomington, Indiana-based parent support organization, the Down Syndrome Family Connection, on engaging in effective medical outreach. What I didn’t share at the training was how it was a bit of cosmic justice for what happened in Bloomington years ago.

In 1982, a baby boy was born in Bloomington, Indiana. Unfortunately, his esophagus was not connected to his stomach. Fortunately, this is an easily repairable condition–even then. Except, his never was.

Instead, on doctor’s orders, the boy laid in the corner of the nursery, with stomach acid bleeding into his thoracic cavity, ultimately eating away at his lungs, and causing him to spit up blood. He died six days later.

He died, though, not because his esophagus wasn’t connected.

He died because he had Down syndrome.

He died because his mother’s obstetrician, Dr. Walter Owens, advised his parents that even if they surgically repaired his esophagus–as they would’ve any other child–this boy would still be a “mongoloid.” In Dr. Owens estimation a “mere blob.”

And, so, Baby Doe, as he became known in the national media, died because his parents withheld care to him on the advice of his delivering obstetrician.

This is why this weekend’s training session with the Bloomington, Indiana parent support organization–the organization in the very town where Baby Doe was born–felt like a bit of cosmic justice to me.

For six hours, I trained these committed parents and volunteers on starting a medical outreach program. They will go out and visit their area birthing centers, OBs, pediatricians, and other medical professionals. They will provide the recommended information for parents receiving a test result for Down syndrome. And, these doctors and their parents will find out what a life with Down syndrome can be like, and that people with Down syndrome are so much more than “mere blobs.”

Some 30 years later, more than 10 years after my own daughter was born, and seven years after I learned about Baby Doe, I traveled to the town where Baby Doe was born and had the opportunity to hopefully prevent another case like Baby Doe’s from happening again.

If you would like to be trained on engaging in effective medical outreach, you can e-mail me at mleach@downsyndromeprenataltesting.com. In receiving the training, your group will make a commitment to providing accurate information for parents finding out their child has Down syndrome.