Model Amanda Booth Dares to Defy Down Syndrome Stereotypes

Cosmopolitan shares Model Amanda Booth’s candid look at her experiences raising a son with Down syndrome and the ways in which she is finding support and advocating for him. 

I still don’t understand why it’s assumed you’re going to have a typical, healthy baby. I did—and it took a while to let go of the blame for being so selfish and naive. When Micah was born, there were so many complications and doubts, but it was in those moments that I discovered his strength; and he taught me to see mine. I still know very little about Down Syndrome, really, but I know a lot about Micah.

Let me start from the beginning, where I had planned a natural delivery in my home with my midwife, Heather. My husband Mike and I had opted out of genetic testing, because it didn’t matter to us—we never would have “done anything about it”—but needless to say, we had no idea that Micah was going to have any chromosomal abnormalities. His heartbeat was, however, pretty weak at the end, so we did a lot of monitoring of him. Some specialists said it was because he was too small, or that my placenta had “given out” and started to calcify. Others said he was perfectly healthy. After two more weeks of monitoring later that one specialist said, “You have to go to the hospital. Now.” And just like that, my entire aspirations of a home birth were blown to smithereens.

When the on-staff pediatric doctor came to visit us for the first time, she asked if we had done any genetic testing. We confidently said, “No, it doesn’t matter to us,” just as we confidently denied the use of erythromycin (the antibiotic ointment applied to newborns immediately after birth to prevent blindness) which we were also judged for: “Why not? It doesn’t harm the baby,” said the doctors. Our approach was as little medical assistance as necessary. We were already on the defensive, training for our marathon race of defending our little guy. Who knew…