My parents trusted the Dr.
That’s what haunts my mom & dad to this day. My Parents trusted the doctor, who told them the pills were safe. “Just something to help with the nausea,” he told them. “Perfectly harmless.” They were young and believed him. My Mom swallowed the pills. She followed every instruction. She did everything she was supposed to do.
And then Lori Jean Kay (Ruberg) was born on September 9th, 1962.
My Mom said the room went silent. Nurses exchanged glances. No one said anything at first, just a heavy, suffocating quiet. Then they called my dad into the room, and they both saw my tiny body, the deformities of my arms and left leg. The significant deformity in my left leg, my parents had the painful decision that my leg ultimately had to be amputated. Over time, the full extent of the internal harm became clear.
But when they asked what happened, the Dr. lied.
He told them it was “one of those things.” Something “no one could have predicted.” He had never seen any birth like mine. The doctor responded with such confidence, knowing all the while at least 3 other babies were born with very similar birth defects under his care and provided the same medication; All born near the same timeframe as well in the same hospital. My parents doubted their own instincts. They blamed themselves. They searched their minds for something they did wrong. To this day they carry guilt that doesn’t belong to them.
All the while, the Dr. knew he lied.
He knew he delivered those other babies with very similar deformities. He knew about the reports of deformities connected to use of this medication. He ignored the warnings! He knew that thalidomide was harming babies around the world. He didn’t inform any of the parents, mine included of the dangers to the babies, worse the doctor didn’t stop providing it.
The doctor never told my parents what he knew about thalidomide, and because of his silence, protecting me—or any of the other babies under his care—was never even an option! The doctor stole that choice from our parents. He was too busy making money to warrant caring for those born harmed. Betrayal of this physician patient trust is a wound that will never fully heal. My Mom and dad felt and still feel guilt over a lie that is not theirs. When I asked why my body is different, they felt that they must swallow the truth because I was too young to carry the weight of a doctor’s purposeful dishonesty. A quiet rage that rises within every time they watch me struggle to do something other children, and now as adults do without thinking.
Mom and Dad say raising me has been both the hardest and most rewarding thing they have ever done. They spent years teaching me how to navigate a world that wasn’t built for me. My Parents fought for equipment, for surgeries, for therapy, for dignity. They celebrated victories that others would overlook, a fastened button, a step taken, a moment of independence.
Mom and Dad said on top of the guilt and devastation, they still had my two older sisters to raise, love, and care for, and 9 years later a younger one to raise, love, and care for. Raising a disabled daughter while caring for my sisters was like living two lives at once both real, both demanding, both filled with love, and both constantly pulling in opposite directions.
On one side, my needs were immediate, The appointments, the surgeries. therapies, medications, equipment, the emergencies that come without warning. The emotional labor of watching me struggle, of holding me through pain, of fighting systems that never cared to listen. Once born my Mom and Dad and I as a new baby were suddenly invisible , All hospitals refused to treat me. Thank God my great Aunt knew of Shriners Lexington who stepped up and willingly provided care .
My parents have said they felt grief and guilt for what was taken from me and my family, grief for the life that I might have had without these unnecessary disabilities.
On the other hand, there were my older sisters who needed their parents just as much, they needed attention, reassurance, normalcy. They needed to feel seen. They needed to know they mattered too. But so often, their needs get pushed to the edges because the crisis in front of them is louder, more urgent, impossible to ignore.
To this day at age 63 they watch me endure pain no one should ever know. Because of my family, Husband David and son Josh and friends I am strong. Stronger than the doctor who lied. Stronger than the system that failed us.
Thalidomide Survivors were all lied to. And that lie changed everything in our lives