**Mother Shares Journey of Hope and Communication for Daughter with Congenital CMV**
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Jess Markins, a dedicated mother and content creator, has taken to social media to share the heartfelt journey of her two-year-old daughter, Caroline, who was born with congenital cytomegalovirus (CMV). Diagnosed just a week after her birth, Caroline’s story is one of resilience and the pursuit of autonomy in communication, highlighting the challenges and triumphs faced by their family.
The path to Caroline’s diagnosis began during Jess’s pregnancy when a routine 20-week anatomy scan revealed some growth restrictions and abnormalities. Markins recalled, “Doctors went through additional testing and close monitoring during my pregnancy, but initially, I was simply told that she was small.” Following Caroline’s birth, everything changed dramatically within the first 24 hours when a brain ultrasound identified calcifications, leading to a diagnosis of microcephaly.
Compounding the early challenges, Caroline failed her newborn hearing screening, triggering additional tests which eventually confirmed the presence of congenital CMV. This virus, affecting approximately 1 in 200 babies, can result in serious long-term health problems. “My first reaction was fear — there were so many unknowns,” Markins admitted. Despite initial trepidation, she remained hopeful that Caroline might be one of the asymptomatic children.
As specialists began evaluating Caroline, it became clear that she required extensive medical support. By the age of two months, she started physical therapy, followed by occupational therapy at six months and speech therapy by her first birthday. Markins passionately embraced early intervention, feeling it was a crucial step towards giving her daughter the best possible start.
Now, at two years old, Caroline navigates structured days filled with various therapies. “She wakes up very early—sometimes around 2 a.m.—and engages with a few TV shows until she officially starts her day at 6:30 or 7 a.m.,” Markins explained. The daily routine involves numerous specialist visits and therapy sessions, demanding considerable time and effort from the family. On quieter days, the focus shifts to play and movement exercises, where Caroline uses adaptive equipment to facilitate her progress.
Caroline’s ability to communicate has evolved tremendously thanks to the use of an eye-gaze device, which allows her to select words on a screen just by looking at them. Markins reflected on this development, stating, “Her communication journey has been incredible to witness. We started with simple buttons and gradually advanced to picture boards and, finally, her eye-gaze device, which has become her primary communication tool.”
As Caroline’s vocabulary continues to grow, so too does her vibrant personality. Markins joyfully remarked, “She has a big personality—she’s funny, sassy, and very opinionated. If you don’t understand what she’s saying, she’ll repeat herself until you do.” Caroline has even expressed her excitement about becoming an older sister this summer, proudly announcing her “big news” through her device.
Despite the challenges they face, Markins has emphasised the importance of communication, stating, “For us, it is about giving her as much autonomy and voice as possible.” Together with her husband, they have created a supportive environment for Caroline and her elder sister, Emersynn, who has known life filled with medical equipment and therapy visits since birth. The bond between the siblings is evident, with Emersynn being a staunch supporter and cheerleader for Caroline’s progress.
Markins has found camaraderie and shared experiences within an online community of parents navigating similar paths. By sharing her family’s story on platforms like TikTok, she hopes to highlight the realities faced by families with medically complex children. “I realised I wanted to be that person for someone else; the parent I wished I had seen when I was grappling with these issues,” she expressed.
Reflecting on societal attitudes towards disability, Markins is clear about her mission: “Disability is not something to hide away; it’s a part of life.” She aims to foster understanding and inclusivity, encouraging everyone to see the value and contributions of children like Caroline. “If sharing our story helps even one person understand or shift their perspective, then it’s worth it,” she remarked.
Through both her advocacy and her personal journey, Jess Markins exemplifies the strength of families facing medical complexities, and her commitment to ensuring Caroline’s voice is heard serves as an inspiring reminder of the power of love and perseverance in the face of adversity.