A Mother's Voice for Change: Clarks Summit mom spearheads legislation after newborn daughter loses hearing to virus

May 14—The instant Kassandra and Ryan Romanaskas heard "Nova," they knew it made for the perfect name for their daughter.

"Nova" is "new" in Latin and it's also used to describe stars that burn bright. A supernova, for example, happens when a star contains so much energy inside it that it bursts, causing a bright explosion in the sky. While some look at this as the end of a star's life, supernovas can actually trigger thousands of new stars that will burn bright across the galaxy.

When Kassandra thinks back to the beginning of her daughter's journey, it felt like their world was caving in. Now, she realizes Nova's world was actually just expanding to be bigger and brighter.

"It directly aligns with who she is," Kassandra, who lives in Clarks Summit with her husband, Ryan, and their children, Nova, now 6, Hudson, 5, and Ledger, 3, said. "There couldn't be a better name for her because we always say, she really is the brightest star in the sky."

New baby and diagnosis

After an easy pregnancy and delivery, Kassandra gave birth to Nova on Dec. 9, 2016. After failing her newborn hearing screening, Nova continued to lose hearing, though doctors couldn't figure out the cause. Thanks to Kassandra's tenacity, Nova was diagnosed with Congenital Cytomegalovirus (or CMV), a virus that can cause serious medical issues or even death in babies infected before birth.

One per every 200 children is born with congenital CMV in the U.S., making it the most common congenital viral infection affecting newborns, according to the National CMV Foundation, and infants can only be diagnosed with a blood sample from the first 21 days of life. However, at the time of Nova's birth, there were no mandatory CMV screenings for Pennsylvania babies. After searching for answers and advocating for her daughter in the community, Kassandra took things to the state level and worked with a group of women to help pass the CMV Education and Newborn Screening Act in June 2022, which requires that every infant who fails a newborn hearing screening in the state be tested for CMV.

It was a long journey to get to where they are today, but that's because Kassandra's love for her children knows no bounds.

"She is not going to back down from something, especially if it's for the kids. If something's wrong, she's going to go after it and she's going to try to figure out why," her husband said. "That's just who she is. She really made this her mission. I'm so incredibly proud of the wife and mother she is. We're so lucky to have her."

Over the moon

Kassandra always longed to be a mom. So when she and Ryan found out they were going to have a baby, Kassandra was over the moon. Their first child also felt sentimental as Nova's name was connected to Kassandra's father, the late Randy Kordish, who died in 2005. Growing up, the Kordishes spent time on horse farms, and Kassandra's dad cared for a beloved horse named Nova. It felt like the stars had aligned and Kassandra couldn't wait to meet this beautiful new addition. Immediately with Nova's birth, the world was a different place.

"My whole focus shifted," she said. "Whatever my life was before her was before and she was now the center of my universe."

Kassandra was in a blissful state during her time at the hospital, in love with their new baby. That's why when nurses mentioned that Nova had failed her newborn hearing screening, the couple wasn't too worried. Hospital staff assured them it was probably nothing, and even a few weeks later when they arrived at a follow-up appointment with an audiologist, neither Kassandra nor her husband were thinking of permanent hearing loss as a possibility.

About an hour later, the audiologist walked out, holding Nova's results in his hands. Before he even said a word, Kassandra sensed something was wrong. Her knees felt weak, her heart sank and her body temperature started to rise as the doctor began to read Nova's official diagnosis, which was severe hearing loss in her right ear and mild hearing loss in her left. Everything was a blur and Kassandra only made out buzz words, like "severe," "lifelong" "hearing aids" and "sign language," as she imagined how difficult her daughter's life was going to be.

"The tears just started pouring down my face," she said. "But the reality of life is, you can't plan for it. You just have to take what you're given and do the best that you can. And that's where you'll find that silver lining."

Early intervention

Still reeling from the diagnosis, she and her husband brought Nova to Children's Hospital of Philadelphia (CHOP), where doctors gave a more positive prognosis. Because Nova was born with some hearing, there were technology and services available to help her. So, the couple also sat down and discussed goals for Nova, as the Romanaskases wanted to do the necessary steps for their daughter to have access to sound.

"This is who she is and how she was born. She's absolutely perfect in every which way, but if we can give her it, we will do anything in our power to give her access to sound. She can experience the gift of hearing that we all have," she said, noting that this was the best decision for their family as both she and her husband come from hearing backgrounds.

Nova needed to begin interventions immediately, and her team at CHOP consisted of an audiologist, who identifies auditory disorders, an otolaryngologist (aka an ear, nose and throat doctor, or an ENT), an ophthalmologist, who specializes in vision care, and a genetics team, Kassandra said.

These days were filled with appointments, tests and early intervention therapies as their loved ones, including Kassandra's mom, Robin Reno, and mother-in-law, Patty Romanaskas, rallied around them. Kassandra, Ryan and Nova began to learn American Sign Language, and the toddler also was fitted with a pair of hearing aids to help amplify sounds. Between their medical team and their own research, the family learned a lot, including that Nova's hearing loss was not genetic. The couple wanted a big family and second child, Hudson, was well on his way at that point, so they weren't worried about any of their other children having hearing loss. Still, no one could explain why Nova was progressively losing hearing. By the time she was 2 years old, tests showed that she was profoundly deaf in both ears.

With her hearing aids not benefitting her anymore, the Romanaskases made the decision that Nova would receive cochlear implants. While they can be controversial to some, the Romanaskases knew this was the best decision for their family. Cochlear implants are surgically implanted devices that bypass damaged portions of the ear and directly stimulate the auditory nerve, generating signals that the brain recognizes as sound. While it was hard to watch their toddler go through this, plus be parents to newborn Hudson, the couple felt more educated and empowered this time around.

"I didn't feel as worried or vulnerable because we knew better," she said. "We were involved in the communities. I had seen the kids with cochlear implants and we were surrounded by all kinds of families ... so it was a much different experience then."

Getting answers

While speech therapy and other interventions were proving to be successful for Nova, there was still a lingering question as to what happened in the first place. Since the genetic tests came back negative, it was considered a fluke, but that answer wasn't good enough for Kassandra, who was determined to get a diagnosis for her daughter.

She's always been a natural leader, Robin said. She's also incredibly nurturing and, the oldest of three, Kassandra always stepped up to help her mom with her younger siblings, Kourtney and Mason. It was no surprise to Robin that Kassandra immediately took to being a mom herself. When Nova was diagnosed, it was difficult for the whole family, but Kassandra stayed focused on what Nova could do, rather than what she couldn't.

"Nova is who she is because of Kassandra," Robin said. "Nova is confident and self-assured because Kassandra has empowered her to be that way. Nova advocates for herself because Kassandra showed her the way."

Through her own research and working with Nova's ENT at CHOP, all of the evidence pointed to CMV as the cause behind Nova's hearing loss. A failed hearing screen is a telltale sign of the virus in newborns, and worse, CMV and its complications can yield different serious medical issues and even cause death. CMV can only be diagnosed from a blood or urine sample from the first 21 days of an infant's of life. Nova was over 2 years old at this point, so her hospital blood card was seemingly their only hope. But the hospital did not keep blood cards longer than one year, which felt like a dead end.

In the meantime, the family was moving and while Kassandra was packing up some of Nova's things one day, she found a box under her bed filled with all kinds of newborn items, including the plastic clamp once attached to Nova's umbilical cord that fell off at seven days old. As Kassandra picked it up, she saw the tiniest speck of blood on the plastic clamp and felt a surge of hope rush through her body.

She immediately notified the ENT, and, the next day, drove the clamp down to Philadelphia to deliver it to him. From there, it would be sent to his colleague at University of Minnesota, who would test it for CMV. Results took a few weeks, but Nova's blood tested positive for CMV. And not only that, but that tiny speck of blood contained 10 times more traces of CMV than any hospital blood card. Kassandra took it as the ultimate sign that she was moving in the right direction.

"I did not save that for Hudson and I did not save that for Ledger. Why did I save that for her? And why did it still have blood on it?" she said. "That to me is the universe being like, 'I got you. I got you and I'm gonna get you the answers you need.'"

Moms for change

The story of Nova's diagnosis was miraculous, but Kassandra also understood how easily someone could contract CMV. The diagnosis likely meant that Kassandra had CMV when she was pregnant with Nova and the virus passed through the placenta and damaged Nova's hearing as it was developing. CMV can present like the common cold or with no symptoms at all. She wondered how many other women this would happen to. That's when Kassandra got involved with the National CMV Foundation and realized there was no required CMV screening for newborns in the state of Pennsylvania.

Early diagnosis of CMV is critical, according to the foundation. There are ongoing antiviral drugs in development that may prevent or lessen the severity of CMV in newborns, and hearing and vision can be checked regularly to identify any early onset of hearing or vision loss. One way to ensure this is by babies being tested for the virus at birth, so Kassandra got involved with state policy work. After giving birth to the couple's youngest child, Ledger, Kassandra was juggling her duties as a mom of three. Still, she had to do her part to help other moms and their families facing CMV.

Through this process, Kassandra met Lindsay Lawless. Lindsay, who lives in Abington Twp., near Philadelphia, was about 35 weeks pregnant with her late daughter, Wynne, when at a routine prenatal visit, something was wrong. After an emergency C-section, Wynne was taken to the neonatal intensive care unit where doctors confirmed the infant had CMV. After fighting for her life, Wynne died in her mom's arms nine days later from a virus Lindsay had never heard of. She rushed to get involved to honor her daughter's legacy, and she and Kassandra clicked over their advocacy efforts. They joined forces with other women who either had legislative experience or had children with medical issues that could have been prevented.

"We were all just moms fighting on behalf of our children and families across the state," Lindsay said. "This is what's come out of my love for (Wynne), Kassandra's love for Nova and all of the love we have for all of our kids. That's what's motivated us to get this done."

The moms worked for about two years and on June 27, 2022, the CMV Education and Newborn Screening Act was signed into law by Gov. Tom Wolf. It was amazing and fulfilling because it took a lot of hard work, Kassandra said, and was well worth it for all of the babies and families it will benefit. After this milestone, the goal is to make universal CMV screenings mandatory for all infants across the country, Kassandra said.

Finding community

While her sights are set on creating change on a larger scale, the best thing she and her husband did for Nova was to fully immerse themselves in the community, Kassandra said. The Romanaskases found outreach that benefited their entire family, like services, events and programs, including Choices for Children, where they can connect with families like them. They've also met amazing doctors, speech therapists, teachers and other advocates along the way.

Today, Nova's surrounded by hearing children, kids with cochlear implants, friends who come from culturally Deaf families who don't use any technology and others who make up her group of friends, Kassandra said. Nova's spoken language is fabulous, but the family also continues to keep up on their ASL, which they utilize whenever Nova's technology is off. No matter the outcome, their goal was to give Nova the resources so that she can succeed in whatever way she wants.

"It's so fulfilling and rewarding as a parent to be working so hard to give her access to all of these things, and then watching her take it and run with it and absolutely just become this inspiration to all of these kids and families," Kassandra said.

She also noticed a shift in Nova's self-advocacy over the last year. Things once reserved for her mom, Nova is now taking the lead, like explaining her cochlear implants to new friends or telling them about her journey. She's proud of herself and her story and she wants to share it with the world.

That's because Nova's differences are what make her shine so bright.

"Whatever difference your child is faced with, we as parents should be talking about it, we should be embracing it and we should really be helping them to feel proud of who they are by being proud of them and believing in them," Kassandra said. "Never set limits to what you think they can or can't do, because any time I've ever in my head been like, 'I don't know if she can do that,' she's always proved me wrong. ... She's exceeded so many goals. She is a rock star. She's amazing."

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Contact the writer:

gmazur@timesshamrock.com; 570-348-9127;

@gmazurTT on Twitter

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