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.
Not Your Fault
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. And, I’d 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.
Having one of the six surviving children with Thanatophoric Dwarfism (TD), I receive messages from people worldwide. 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.
Thanatophoric Dwarfism Defined
Thanatophoric Dysplasia Dwarfism is categorized as of a lethal form of dwarfism and is generally considered not compatible with life. This diagnosis was discovered in 1967 by Pierre Maroteaux and his coworkers who used the Greek term “thanatophoric” meaning death-bringing. (MedicineNet.com) At nine years old, my son’s young life has already defied the odds. He is my little miracle Mann.
Characteristics: Samuel’s rib cage is so small it fits in the palm of my hand. He is twenty-five inches long and weighs twenty two 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 twenty six years old. Will my son exceed this threshold? My momma’s heart says yes. But only God knows.
As we meet people and are peppered with questions, 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.” (See video below.)
Click Below to view video of Samuel laughing playing with blocks.