Charli Worgan and her husband Cullen, both living in Sydney, Australia, have long faced public curiosity due to their unique forms of dwarfism. But when Charli, already a mother of two, announced her third pregnancy, the spotlight intensified, with many questioning not just “when” but also “why.” Yet, through it all, Charli has remained bold, unapologetic, and inspiring, even sharing intimate moments like posing with her baby belly on the beach despite the potential dangers her pregnancy poses.
A Family in the Spotlight
Charli and Cullen, both of whom have different forms of dwarfism, have become public figures, especially after welcoming their first child. Like many mothers, Charli turned to social media to document and share her family’s journey. What started as a personal chronicle quickly garnered a massive following, with Charli amassing over 300,000 Instagram followers who eagerly tune in to her updates on family life, parenthood, and the unique challenges they face.
However, unlike most parents, Charli and Cullen’s pregnancies come with significant risks. Their genetic makeup means that each of their children could inherit a variety of outcomes, some of which could be life-threatening. With each pregnancy, the Worgans have had to navigate the uncertainties of genetic testing, hoping for the best while preparing for the possibility of the worst.
The Risk of Double Dominant Dwarfism
In a heartfelt Instagram post, Charli recently shared that she was fourteen weeks pregnant with her third child. The announcement, while joyful, was also filled with tension. Charli explained the complexities of her pregnancy, revealing that genetic testing was a crucial part of their journey. Due to the couple’s different forms of dwarfism, their children have a unique set of genetic possibilities, each carrying different implications.
Their two daughters, Tilba, 4, and Tully, 2, have each inherited one form of dwarfism from their parents. Charli’s third pregnancy brought the possibility of four outcomes: the baby could be of average height, have the same form of dwarfism as Charli (achondroplasia), inherit Cullen’s form of dwarfism (geleophysic dysplasia), or—most dangerously—inherit both conditions. The last outcome, known as “double dominant dwarfism,” is considered fatal.
Charli candidly shared the emotional toll of waiting for genetic test results, knowing that the outcome could drastically alter the course of her pregnancy. “Our child could have a chance of ordinary height, or inherit either my or Cullen’s form of dwarfism,” she wrote. “But there’s also the chance that the baby inherits both genetic traits, which doctors tell us would be fatal.”
Navigating Genetic Testing
While many expecting mothers celebrate the 12-week mark with joy and announcements, Charli faced something far more daunting. At 12 weeks, she underwent Chorionic Villus Sampling (CVS), a procedure similar to an amniocentesis, where a sample of the placenta is taken to analyze the baby’s genetic composition. The procedure comes with a 2% risk of miscarriage, adding another layer of anxiety to an already complex pregnancy.
In her social media posts, Charli expressed the heartbreak of not being able to celebrate milestones in the same way many mothers do. “Instead of joyfully announcing my pregnancy, I was preparing for a procedure that carries a risk to my baby,” she said. “But it’s necessary to understand what we are facing.”
Strength Amid Uncertainty
Through all the uncertainty, Charli’s strength and resilience shine through. Her social media presence is filled with honesty, vulnerability, and determination. She has used her platform to raise awareness about the challenges of dwarfism and to highlight the importance of genetic testing for families in similar situations. Her posts, filled with candid moments and updates, inspire thousands of followers, many of whom praise her for her courage.
But Charli also emphasizes the beauty and joy in her family life, even amid the challenges. Recently, she boldly posed with her baby belly on the beach, a moment of defiance and celebration in the face of the risks she’s navigating. The image resonated with her followers, symbolizing her determination to embrace life’s moments, no matter how uncertain the future may be.
A Difficult Choice
As Charli awaited the results of the genetic testing, she openly discussed the difficult decisions that could lie ahead. If the baby were diagnosed with double dominant dwarfism, Charli would face the heartbreaking choice of whether to continue the pregnancy or terminate it, knowing the prognosis would be fatal. “If the results come back showing the baby has double dominant dwarfism, I could decide to terminate or continue and see how things turn out,” she explained.
Despite these potential outcomes, Charli remains hopeful and focused on cherishing every moment of her pregnancy. “For now, we wait,” she said, emphasizing that the love and joy of her family remain at the forefront, regardless of what the future holds.
The Power of Community
Charli’s story has not only raised awareness about the realities of living with dwarfism but also built a supportive online community. Her followers, many of whom face their own challenges, find solace and inspiration in her journey. Through her posts, Charli demonstrates the power of vulnerability and the importance of family, no matter the odds.
As Charli continues her pregnancy journey, she remains a symbol of strength, love, and resilience. Despite the dangers and uncertainties, she faces each day with bravery, sharing her story in the hopes that it will encourage others to do the same.