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Dwarfism Q&A with Jean's Mom

Over the years, Jean's mom has been asked a lot of questions about dwarfism. Following are some of the most common questions that she has answered to inform friends and family of Jean’s progress!

What is dwarfism?

Dwarfism is defined as short stature that results from a genetic or medical condition. The average height among people with dwarfism is 4 ft, though it’s generally defined as an adult height of 4 ft 10 in or less. Dwarfism is neither an intellectual disability nor a disease that requires a cure. Most little people are very intelligent, and Jean is no exception!

What type of dwarfism does Jean have?

The most common form of dwarfism is achondroplasia, so that’s what you’ll see most. Achondroplasia is identified by a protruding forehead, short arms and legs, and a normal sized trunk or torso. Little people are tested at birth to see what type of dwarfism they have, that is how we found out that Jean is one of a kind! Her type of dwarfism is undiagnosed; she shares similarities with a few types, but she doesn’t quite match to any types that have been diagnosed. While the unknowns are a bit intimidating, the knowns are a blessing.

Why did Jean have to have the trach & vent?

Jean needed the trach and vent because when she was born, her chest was too small for her lungs. She would breathe as if she couldn’t catch her breath. When you have a little person, most of the time the thing that causes dwarfism to be fatal is that they have such a small skeleton and sometimes what needs to fit cannot fit. The trach and vent allowed Jean extra time for her chest to grow so her lungs could fully expand in her chest.

Does Jean have issues sleeping or positioning?

Jean sleeps through the night and normally takes a 2-hour nap. The nurses do rotate her through the night because it is good to do so. We’ve rotated Jean like a rotisserie since she was in the NICU and we were able to. Little people are known to have missing joints, joint issues, bowed legs and a lot of people with dwarfism also suffer from scoliosis.

Does Jean have weight issues?

Obesity is very common in little people! More than 50% of little people suffer from obesity. Due to their short stature, every bit counts. Jean sees a dietician routinely and they monitor her calorie intake. Jean eats normal, balanced meals during the day, and at night gets three feedings of a formula that provide all the proper nutrition she needs. Jean’s weight is on target for someone of her height. She is currently 22 pounds, and 27 inches tall.

Will she have any issues with hearing?

Little people often have recurring ear infections. Jean has had tubes put into her ears, but it is common for little people to need multiple rounds of tubes, and almost all have their tonsils and adenoids removed. Jean has passed all her hearing tests with flying colors.

Does Jean have any mobility problems?

Most little people take a bit longer to walk. Their bodies are usually a bit disproportionate and so their center of gravity is different from you or me. I know that it took Jean a bit just to gain head and torso control. She currently walks and balances and we are working on running, skipping and jumping. Jean currently wears SMO braces in her tennis shoes to help her balance.

How is dwarfism inherited?

Any 2 average height parents can have a baby with skeletal dysphasia or dwarfism. In fact, 80% of little people are born to average height parents with no history of dwarfism in their families. Now, that being said, if Jean does ever have children, she will have a 50% chance of passing the gene onto her children. She also carries a 50% chance of ever having children.

There are over 200 types of different dwarfism, Jean doesn’t match any of them. She is the only one with her type that doesn’t even have a name. In general, dwarfism is about a 1 in 5,000 occurrence.

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