When People Ask About My Son’s Dwarfism, This Is My Best Response

Have you ever watched “Little People, Big World” or “The Little Couple”? The popularity of these programs demonstrates the public’s fascination with dwarfism. This rings true when I go out in public with my son, Samuel. People frequently ask about his diagnosis.

Dwarfism is defined as a person who has an adult height of 4 feet, 10 inches or shorter. There are an estimated 200 types of dwarfism. Most people are aware of this condition but know little else, giving rise to the curiosity.

Samuel’s dwarfism is not inherited but rather the fate of a random genetic mutation. His condition was through no fault of my own. Drinking soy milk while I was pregnant didn’t cause it. Falling heavily and landing on my knees didn’t cause it. I’d also venture to say that my advanced maternal age (or my husband’s age) didn’t cause it, although some theories on the Internet state otherwise.

I receive messages from people worldwide about thanatophoric dwarfism (TD, also referred to as thanatophoric dysplasia), which is what my son has. One dear lady whose child had TD believed for months it was her fault. My heart broke for her. She experienced great relief when I shared the truth with her.

The mutation causing thanatophoric dysplasia dwarfism is described as “lethal.” This diagnosis was discovered in 1967 by Pierre Maroteaux and his coworkers; they used the Greek term “thanatophoric,” which means “death-bringing.” At 9 years old, my son’s young life has already defied the odds. He is my little miracle Mann.

Samuel’s rib cage is so small it fits in the palm of my hand. He is 25 inches long and weighs 22 pounds. His short arms and legs, portly belly and trident hands are as soft as a baby’s skin. His flat button nose is utterly kissable.

The primary concern at birth was his inability to breathe. And though he needed a ventilator, we were blessed to bring him home after six months. Several years later, to my great surprise, he no longer needs a ventilator to breathe.

My son’s life expectancy is a bit of a mystery, which I believe is determined more by the miracle of his life rather than by what a textbook states. I’ve had the blessing of meeting other TD families who have blazed a path to hang my hopes on. The oldest survivor I know lived to be 26 years old. Will my son exceed this threshold? My momma’s heart says yes. But I believe only God knows.

As we meet people and are asked questions like, “Who is Samuel?” how do I respond? I can offer statistics like the occurrence of TD being 1 in 20,000 to 50,000 newborns or throw around Greek words and definitions, but I’d say the answer is in his smile. “Here I am,” his smile suggests. “Watch me thrive.”

A version of this post originally appeared on A Miracle in My Living Room.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Dwarfism

Why We Weighed Our Baby in Grams During Her First 18 Months

When you’re pregnant, you have amazing dreams about your roly-poly baby with cute baby fat rolls and chubby cheeks. But when reality sets in, those dreams change. Bella was born tiny. In fact, she was one of the smallest babies on the neonatal intensive care unit floor. When you’re in the NICU and have a baby who [...]

When My Kid’s 3 Words Revealed More About My Mistake Than Her Autism

There I was, sitting at my son’s baseball game, watching my 7-year-old daughter dig through the grass with purpose. She was picking through small white flowers, her face inches from the ground, inspecting each one carefully, crawling, digging and leaving behind any that were not the exact shade she had set her mind on. This [...]

3 Things That Happen When You Date Me and My Disability

It’s not always easy being the man in my life. I’m sure every woman can say that with some modicum of truth. I am no different. But I can say that dating me, a person with an obvious physical disability, is sometimes an adventure in ways that dating someone else might not be. 1. Strange [...]

Going to College With a Rare Neurological Condition Made Me Stronger

There are years I feel like I will never get back. I slacked off in high school, never put myself out there to get a job, make new friends or volunteer and wasted too many years after high school before finally going to college. But there was a reason. I have a rare neurological condition [...]