For many married couples, one question seems to arrive sooner or later: “When are you going to have children?”
For Charli Worgan and her husband, Cullen, however, the questions they encountered were often very different.
Instead of simply asking when they planned to become parents, strangers and online commenters sometimes wanted to know why they would choose to have children at all.
The reason was connected to something immediately visible about the Australian couple: both Charli and Cullen live with forms of dwarfism.
Yet their conditions are not the same. Charli has achondroplasia, while Cullen has geleophysic dysplasia. Their different genetic conditions meant that starting a family involved questions and medical considerations that most prospective parents never have to confront.
Their story would eventually become known to hundreds of thousands of people online. But behind the photographs of smiling children and ordinary family moments was a much more complicated journey involving genetic counseling, prenatal testing, uncertainty, public judgment, and the emotional realities of parenthood.
Most importantly, it became a story about a family that wanted people to see beyond height and genetic diagnoses.
Two Parents, Two Different Genetic Conditions
The word “dwarfism” can sometimes give people the impression that it describes one specific medical condition. In reality, short stature associated with dwarfism can have many different causes.
The U.S. National Library of Medicine notes that more than 300 conditions can cause dwarfism. Achondroplasia is the most common form of disproportionate short stature. It affects approximately one in every 15,000 to 40,000 newborns.
Charli lives with achondroplasia.
The condition is caused by variants in a gene called FGFR3, which is involved in regulating bone growth. Achondroplasia follows what geneticists call an autosomal dominant inheritance pattern. That means one altered copy of the gene is enough for someone to have the condition.
Many people with achondroplasia are born to average-height parents because the genetic change can occur spontaneously. When a parent has achondroplasia, however, the variant can also be passed to a child.
Cullen lives with a different and considerably rarer condition: geleophysic dysplasia.
According to GeneReviews, geleophysic dysplasia is characterized by short stature, short hands and feet, joint limitations and other features that can vary considerably among individuals. Some forms can also involve the heart, respiratory system and other parts of the body.
Researchers have linked geleophysic dysplasia to pathogenic variants in genes including ADAMTSL2, FBN1 and LTBP3. Importantly, the way the condition is inherited depends on the particular gene involved. Some forms are autosomal recessive, while others are autosomal dominant.
For Charli and Cullen, these genetic realities meant pregnancy could bring a level of uncertainty that extended far beyond the usual questions about names, nurseries and due dates.
Becoming Parents Under Public Scrutiny
When Charli became pregnant for the first time, the couple encountered curiosity and scrutiny from people around them and eventually from people online.
Some were genuinely interested in understanding the medical side of their pregnancy.
Others were far more judgmental.
Questions about whether they “should” have children became part of the experience.
After their first daughter was born, Charli began documenting the family's life on social media. What may have started as a way to share their experiences and educate curious people eventually developed into a substantial online following.
Her account grew to hundreds of thousands of followers.
Instead of presenting dwarfism only through medical terminology, Charli offered something more personal: everyday family life.
There were photographs of children growing up, parenting milestones, medical appointments, celebrations and ordinary moments recognizable to almost any parent.
At the same time, Charli was willing to discuss some of the difficult decisions behind those photographs.
That became particularly important when she became pregnant again.
Four Possible Outcomes
By the time Charli was expecting her third child, she already understood how emotionally complicated pregnancy could become for their family.
Her two daughters, Tilba and Tully, had each inherited one of the forms of dwarfism found in the family.
During her third pregnancy, Charli publicly explained that she and Cullen were waiting to discover which genetic outcome their new baby would have.
She described four possibilities.
The baby could be of average height.
The baby could inherit Charli's achondroplasia.
The baby could inherit Cullen's geleophysic dysplasia.
Or the baby could inherit genetic variants associated with both parents' conditions.
It was the fourth possibility that created the greatest anxiety for the family.
Charli described doctors telling them that inheriting both conditions was expected to have extremely serious consequences and could be incompatible with survival.
That possibility meant pregnancy milestones that are often associated with celebration could feel very different for her.