"For us, communication is about giving her as much autonomy and voice as possible," Jess Markins tells PEOPLE of her 2-year-old daughter Caroline
Credit: Laura Worrell Photography
NEED TO KNOW
- Jess Markins’ daughter Caroline was just one week old when she was diagnosed with congenital CMV
- Now 2 years old, Caroline undergoes several different forms of therapy a week and communicates via an eye-gaze device
- Markins tells PEOPLE about her daughter’s journey and explains why it’s important to her to share their life online
Jess Markins' daughter was just a little over 24 hours old when her whole world was rocked.
The mom and content creator, who has been sharing her 2-year-old daughter Caroline's journey on TikTok, tells PEOPLE that she first learned that something might be wrong with Caroline during her pregnancy at her 20-week anatomy scan.
"Doctors noticed growth restriction and some abnormalities on the ultrasound," she explains. "We went through additional testing and very close monitoring for the rest of my pregnancy, but I was mostly told that she was just small."
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Credit: Laura Worrell Photography
Markins says that she was told Caroline would be evaluated more thoroughly once she was born, since nothing stood out strongly enough to give a clear diagnosis. And for the first 24 hours of Caroline's life, everything was relatively normal.
"After that, everything changed. A routine brain ultrasound showed calcifications, and she was diagnosed with microcephaly," says Markins. "That led to an MRI, which revealed more extensive abnormalities in her brain."
"Around the same time, she failed her newborn hearing screening. Because of [the state of] Virginia's guidelines, that meant she needed to be tested for congenital CMV — something I had never even heard of before."
According to the CDC, cytomegalovirus (CMV) is a common virus that infects people of all ages. However, when a baby is born after being infected with CMV during pregnancy, it is called congenital CMV. About 1 in 200 babies are born with congenital CMV infection, and about 1 in 5 babies with congenital CMV infection will have birth defects or other long-term health issues.
"When Caroline was one week old, we got the results: she tested positive for congenital CMV," says Markins. "My first reaction was fear — there were so many unknowns. I clung to the hope that she might be one of the children who test positive, but remain asymptomatic.
Credit: Laura Worrell Photography
But as Markins and her partner Chris began meeting with specialists, it became clear that Caroline was symptomatic and would need significant medical support. She began antiviral medication during her first weeks of life, and early intervention began shortly after. Caroline had physical therapy at 2 months old, occupational therapy at 6 months and speech therapy by her first birthday.
"At first, I think I was in a bit of denial, hoping things might not be as serious as they seemed," she says. "But I also knew that giving Caroline every available resource could only help her. Early intervention became something I was incredibly passionate about right from the start. Even in the middle of fear and uncertainty, I knew action was something I could control."
Now two years later, Caroline's days are very structured. Markins says her daughter gets up very early — sometimes around 2 a.m. — and will watch a few TV shows while she tries to sleep a little more. They officially begin the day at 6:30 or 7 a.m., where Caroline gets her first G-tube (gastronomy tube) of the day.
"Caroline sees multiple specialists and has therapy every week, so some days are very busy and involve a lot of driving and time at clinics," says Markins. "On days we're home, we focus on movement and play. She spends time stretching, using her swing and doing floor activities like assisted sitting and rolling."
"She also uses supportive equipment like her activity chair and stander, depending on her energy level that day. Throughout the day, we incorporate her eye-gaze device so she can communicate and make choices," she continues.
Credit: Laura Worrell Photography
Caroline is able to communicate through her eye-gaze device, which is a form of augmentative and alternative communication (AAC) that uses eye tracking. She can select words or phrases on a screen by just looking at them.
"Her communication journey has been incredible to watch. We started when she was about a year old with simple buttons, which gave her very limited ways to express herself. But the more she worked in speech therapy, the more we realized she had a lot to say," explains Markins.
"We moved to picture boards, where she began communicating with her eyes, and as she got older, she had a formal eye-gaze evaluation. She did so well that she now uses her eye-gaze device as her primary way to communicate."
Markins says that Caroline's vocabulary is "constantly growing" and that they are always adding new words and updating her device to match her growing interests and personality.
"And trust me, she has a big personality. Caroline is funny, sassy and very opinionated," says the proud mom. "If you don't understand what she's saying, she will absolutely repeat herself until you do."
Credit: Laura Worrell Photography
Right now, Markins says some of her daughter's favorite things to say are "watch" followed by the name of a television program, and she's been asking for "drink water" because she enjoys taking small sips by mouth.
Caroline also has an About Me page on her device, where she can share her name, age and birthday. Markins says Caroline loves to tell people all about herself, and adds that her favorite button right now is "big news." She's set to become a big sister this summer.
"She tells anyone and everyone, and she is so proud and excited," says Markins.
When they don't have the eye-gaze device, Markins and her family use head taps to help her make choices. But even without any tools, she says that Caroline is incredibly expressive.
"You can see what she's feeling just by watching her face. Her smile is warm and contagious, and she makes it very clear what she thinks," says Markins. "For us, communication is about giving her as much autonomy and voice as possible — and watching her personality shine through has been one of the greatest gifts."
Throughout this journey, Markins says she and her husband have been very fortunate to rely on a strong support system around them. Both of their families live within 30 minutes, and they've been leaning on their local community recently.
@jessmarkins22 I’ve been getting so many questions about eye gaze — what it is, how it works, and how Caroline uses it to communicate. Caroline is nonspeaking, and eye gaze gives her access to language, choice, and connection. This is what it looks like for her and the words she uses most in her everyday life. Representation matters. Communication matters. 🤍 #EyeGaze #AACAwareness #Nonspeaking #DisabilityRepresentation #CommunicationForAll
♬ original sound – Jess | Medical Mom
"We’re currently fundraising for adaptive equipment and a wheelchair-accessible van for Caroline, and the way people have rallied around her has been overwhelming in the best way," she says. "Seeing how much love and care people have for her truly blows me away."
"Day to day, my husband is my biggest teammate. He works incredibly hard — seven days a week — to support our family financially so I can stay home and be Caroline’s full-time caregiver and be present for both of our girls," she continues. "That kind of partnership makes everything we do possible."
Caroline also has a big sister named Emersynn, who is only 13 months older than her. The two sisters have grown up together, and Emersynn has never known life without medical equipment, therapy visits and extra care for Caroline.
"What amazes me most is how naturally Emersynn has adapted. From the time she was very little, we never had to constantly tell her 'don’t touch' or worry about her interfering with Caroline’s equipment," says Markins. "When Caroline had feeding tubes taped to her face, Emersynn didn’t pull at them. With her feeding pump or medical supplies, she’s always been curious but respectful. Even with Caroline’s hearing aids, she asks questions but doesn’t try to grab or remove them."
"Emersynn just wants to be involved. She watches closely, asks questions, and cheers Caroline on in the sweetest ways. When Caroline uses her eye-gaze device, takes a sip of water, or activates a toy, Emersynn is right there clapping and cheering her on. She is truly one of Caroline’s biggest supporters."
Since sharing Caroline's story on TikTok, Markins says she's found a community online from other parents who are walking the same path as her. She's also been able to advocate for her daughter and provide an example of a medically complex and disabled child.
@jessmarkins22 Watching Caroline reach, track, and engage during moments like this is everything. Having supportive items in our home makes such a difference in how she’s able to move, play, and show us what she can do—while still keeping it comfortable and fun for both of us. @Muscle Mat #MedicalMama #SpecialNeedsMama #AdaptivePlay #MuscleMat #DisabilityRepresentation
♬ original sound – Cityboydavid
"When Caroline was first diagnosed, I found myself searching for other parents who were living this kind of life. Watching medical moms and disability parents share their experiences made me feel less alone," Markins tells PEOPLE. "Seeing how they adapted their homes, routines, and expectations to give their children full, meaningful lives was incredibly powerful for me."
"At some point, I realized I wanted to be that person for someone else. I wanted to be the mom I wish I had been able to watch when I was newly navigating diagnoses, equipment, and a completely different version of parenthood than I had imagined," she says. "There’s also such a lack of representation for medically complex and disabled children. Our world is built for able-bodied people, and families like ours often have to fight and advocate just to access basic opportunities."
Markins says she feels a responsibility to share their family's story to help create more awareness, more understanding and more inclusion for kids like Caroline.
"I want people to see that disability is not something to hide away — it’s a part of life, and these children deserve to be seen, supported, and celebrated," she says. "I would choose Caroline in every lifetime, a hundred times over. What I would change is not her — it’s the way society views and supports people with disabilities. If sharing our story helps even one person better understand or shift their perspective, then it’s worth it."
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