Rebekah and Chris: Achondroplasia (Dwarfism)

Jul 3, 2018 | Achondroplasia, Dwarfism, Prenatal diagnosis, Stories

Barlow Family

Rebekah and Chris both have achondroplasia or dwarfism.  They have two amazing children, a son who is typical and a daughter Ella who also has achondroplasia.  Even though she is small, she is making a big impact in her family. 

Little but Mighty: A Story of Dwarfism

Planning for the Baby

Rebekah and Chris knew they had a chance of their children having achondroplasia or dwarfism like them.  When Rebekah was pregnant with her second child they did an amniocentesis. This is a genetic test done using the amniotic fluid to screen for developmental abnormalities in utero. 

Rebekah said, “I don’t like surprises; I have to be prepared..we would have taken any type of diagnoses we got as we were going to take this pregnancy all the way, but we just wanted to prepare because I didn’t want the unknowns.”

Getting a Diagnosis

The amniocentesis showed that their baby Ella did have achondroplasia like Rebekah and Chris. Chris shared his first reaction, “I was scared to tell you the truth, because during my life, I was small..I don’t know why, but I thought that Ella might get made fun of a lot and stuff like that.”

Chris had some past experiences in high school and junior high that made him afraid for Ella.  Rebekah shared how her parents helped her in her school aged years. “What prepared me the best is both of our parents who were involved with other parents who have kids with dwarfism.  Little people of America is a great organization, and they got us involved in that, so we were able to make friends with our peers who were people with dwarfism our age.”

A Child with Dwarfism Draws Attention

Rebekah shared what challenges they have faced with Ella who is five, “When Chris and I were walking down the street with a baby stroller, I would put the curtain down, because when people saw us, they would turn around and look in because they wanted to see the child.” As parents, they felt like they were on display.

She then shared what would have been helpful in that situation, “If they did have questions and if they did come up and start asking questions about us, wanting to know about our dwarfism and who we are, of course we’d show you the baby.” 

Differences in Children

Rebekah shared what is great about having a child with dwarfism. Rebekah said, “The good thing about it that they don’t walk until around two years old, and by the time they are that age they know..what they cant touch.” 

“It has been nice that we didn’t have to baby-proof at all.  That was the stark difference between our son and her; I didn’t have to baby-proof anything.” Rebekah added.

Advice for Others

“Find as much information as possible as you can and seek out other people who have the diagnosis, parents as well as adults who have the diagnosis; that’s going to be your best bet because you’re able to see where they are and how they got there and what to expect.” Rebekah stated.  

She also gave great advice for the siblings of someone who has dwarfism, “Just seek out Little People of America and get your child and your family to be a part of that organization.  My average-sized brothers and sisters have benefited from that siblings were able to make friends with other siblings and other little people, and they were able to share their stories and how their siblings with dwarfism get all the attention.”


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