National Dwarfism Awareness Month

In 2005, my little bundle of joy was born. Unlike most births, two doctors delivered my son, Samuel. His potential diagnosis caused them considerable concern. His specific type of dwarfism was considered  “not-compatible-with-life” based on underdeveloped lungs. Within minutes of birth, Samuel was whisked away to the Neo-natal intensive care unit, needing help to breathe.

What happened in the days and months to follow awed doctors and nurses alike. In his first six months, he needed a tracheostomy and a feeding tube. Once home from the hospital and the years that followed, he weaned off of the ventilator, much to my surprise. Fast-forward fifteen years, and he is full of life, laughter, and love with adoring fans all over the world.

Basic Facts About Dwarfism

• There are over 200 forms of dwarfism.
• 80% of little people are born to average-sized parents.
• 30,000 people in the U.S. have dwarfism.
• The Americans With Disabilities Act protects the rights of people with dwarfism.

For more facts, go to http://www.udprogram.com/basic-facts/

Three Types of Dwarfism

Gary Coleman, Peter Dinklage, and Amy Roloff are a few famous people with dwarfism. These actors have the most common form of dwarfism called Achondroplasia defined by short arms and legs while the torso is normal length.

The average height of adults with Primordial dwarfism is around 33” tall. They are considered the smallest people in the world. Kenadie has this diagnosis. You can view her story here: http://www.barcroft.tv/tiny-kenadie-jourdin-bromley-born-with-primordial-dwarfism-defies-all-odds

Samuel’s type of dwarfism is called Thanatophoric Dysplasia which is considered a severe skeletal disorder characterized by a disproportionately small ribcage, extremely short limbs, and folds of extra skin on the arms and legs. “Thanatophoric” is a Greek term meaning “death-bringing” and is one of the most common lethal skeletal dysplasias with an incidence of 2 to 5 in 100,000 births.

Ask Me Anything

As a mom to a child with dwarfism, I have received a myriad of questions over the years. Here are a few.

Question: Is there dwarfism in your family?

There are no cases of dwarfism in our families’ genetic histories. Samuel’s type of dwarfism occurs as a random genetic mutation. Both my husband and I are of average height.

Question: Why does he need a tracheostomy (trach)?

I especially love getting this question from children because it offers an opportunity for a teachable moment. I explain that Samuel was born needing help to breathe. The children, so sweet and accepting, nod their heads and then run off to play. In truth, his little lungs needed help to stay open, so he needed a ventilator to help his lungs function. Now he doesn’t need the machine but still has the trach to give him oxygen occasionally at night.

Note: Not all children born with dwarfism need a tracheostomy; however, most children born with Thanatophoric Dwarfism need this device to help them breathe.

Question: How tall will he get?

To answer this question, I must look to others with TD. One boy grew to three feet tall. At age fifteen, Samuel is 28 inches tall. As you can see in this picture, he may be small in stature, but he is big in personality.

Question: What has Samuel taught you about life?

To be present and cherish every moment in life. We had so many close calls with Samuel over the years, that I found myself waiting for the other shoe to drop. Holding my breath, I waited to see what would happen next. Then Samuel’s health turned around and kept improving. I found I could relax and enjoy my son. This was a turnaround for me. And though, we’ve had setbacks, Samuel continues to surprise me.

Each day brings a set of challenges of its own; but, at the end of the day, seeing him giggle, laugh and smile, makes my heart full. Samuel was interviewed on Special Books by Special Kids and has 2.3 million views. (Samuel is 11-years-old in this video but he is now fifteen.) Check it out here: https://youtu.be/Ayt465ueRgM

For more questions and answers, go to my website to read Ask Me Anything Challenge: https://miraclemann.com/ask-me-anything-challenge/