My Quest to Understand What Caused My Children’s Birth Defects

A journey into my family history, the chemical industry, and genetics

Amy Roost
Human Parts
Published in
19 min readMar 27, 2019


Illustration: Sara Wong

IIt’s 1989. I’m 26, 19 weeks pregnant, and I really need to pee. The technician calls my name and I follow her to the examining room where I undress and slip under the cold white sheet on the examining table. After some discussion about morning sickness, she applies gel to the wand and places it on my small baby mound. She gently presses the wand over my full bladder. I feel a slight release of warm urine between my legs. She presses the wand a little harder, then takes another pass around my mound before returning it to its cradle and telling me, “Wait here, I’ll be right back.”

“Is everything okay?” I ask.

“The doctor will explain.”

I’m frightened and alone, no longer worrying about needing to pee.

Is my baby alright?

The answer is no. What the technician saw, my doctor explains, is a sign that my baby is developing with numerous birth defects. Namely, my baby is developing spina bifida — a neural tube defect in the upper lumbar region where the baby’s spinal cord hasn’t closed — and anencephaly, meaning a major portion of the baby’s brain, skull, and scalp was missing.

Long hours turn into endless days. My husband, Steve, and I meet with a geneticist who asks questions about our family history — most of which I can’t answer because I’m adopted — and lays out the baby’s dire prognosis and our options for addressing it.

We ask what caused the baby’s neural tube and brain defects. The geneticist offers no clear answer, only speculating that the “anencephaly was likely caused by things mom came into contact with.” Something I ate or drank, or perhaps a chemical I was exposed to during pregnancy. She means these words to be reassuring. She means my future pregnancies probably won’t be at risk.

I’m far from reassured. All I can hear is: You did something wrong to cause this.

Abortion is not always a simple case of wanting or not wanting a child.