Community Alliance Chair Spotlight: Haley Childs, Michigan

Community Alliance Chair Spotlight: Haley Childs, Michigan

Author: Haley Childs, CCA Michigan

During my second pregnancy, I started itching constantly, and it wouldn’t stop. I was immediately tested for cholestasis of pregnancy, and the results came back positive. My providers explained that my body appeared to be responding to something viral, so they completed a viral panel that identified an active CMV infection during pregnancy. At the time, I was pregnant with spontaneous triplets during the tail end of the pandemic, while also raising a toddler in daycare.

I kept wondering how I could possibly be sick. I had followed all the “rules” during pregnancy. I didn’t scoop cat litter. I avoided obvious risks. What I didn’t know was that my toddler likely carried a very common virus called CMV — one that is usually harmless in children but can be dangerous during pregnancy. I had never heard about congenital CMV before my diagnosis.

After the birth of our triplets, all three boys referred on their hearing screenings in the NICU and tested positive for congenital CMV at birth. That moment changed everything for our family. Although I had been diagnosed during pregnancy, I still knew very little about what congenital CMV could mean long term or what resources were available for families like ours.

I eventually discovered the National CMV Foundation after following our CMV developmental pediatrician, Dr. Megan Pesch, on Instagram. She shared information about the organization, and I was surprised to learn there was an entire foundation dedicated to CMV awareness and advocacy. Around that same time, I saw that the Foundation was looking for volunteer advocates through their CCA program. It felt like the perfect opportunity to share our story, educate myself further, and help advocate for other families navigating similar experiences.

Becoming involved in advocacy connected me with an incredible network of families, professionals, and organizations focused on CMV awareness and support. It also gave me the opportunity to connect with other parents of children with CMV — people who truly understood the uncertainty, fear, and constant advocacy involved in raising medically complex children.

Looking back, there is so much I wish I had known earlier. I wish I had known that CMV is often preventable. I wish I had known that congenital CMV exists on a broad spectrum and can affect every child differently. Most of all, I wish I had known that despite the uncertainty, things would eventually be okay.

I feel fortunate to live in an area with access to university hospitals and specialty providers who supported us throughout an already high-risk pregnancy. Because my CMV infection was identified during pregnancy, we were able to coordinate with the NICU team prior to delivery and create a testing plan for the babies at birth. The triplets were born at 31 weeks following a placental abruption and emergency cesarean section. They spent time in the NICU due to both prematurity and complications related to congenital CMV. At birth, both urine and cord blood testing confirmed that all three boys were CMV positive.

Even with strong medical support, there were still significant gaps in education and awareness. The only formal resource I initially received about congenital CMV was a March of Dimes pamphlet that primarily highlighted hearing loss. Like many parents, I turned to Google searching for answers, but it was difficult to know what information was trustworthy. That experience showed me just how limited public awareness around CMV still is, even among families directly impacted by it.

Over time, I became increasingly aware that geography plays a major role in the care families receive. Some states have implemented newborn CMV screening programs or require education for women of childbearing age, while others have not. I have watched states begin pushing forward legislation focused on universal screening and public education, and it has been encouraging to see momentum building across the country. To me, “geography shouldn’t matter” means that every family, regardless of where they live, should have access to the same information, testing, care, and support.

One experience that deeply reinforced this for me involved a case study developed by one of the universities caring for my triplets. The study focused on our spontaneous triplets with congenital CMV — one of only a few documented sets of triplets in the world with identified cCMV. Through that process, I learned that other reported sets of triplets with congenital CMV were not successfully treated or were unable to survive, likely due to differences in access to education, medical care, and advocacy. That realization has stayed with me.

While we do not always have immediate access to every resource we need, I have learned how to ask for support, seek second opinions, and advocate aggressively for my children. That is something I now try to empower other families to do as well.

Finding knowledgeable providers was thankfully not as difficult for us as it is for many families. We had strong support from our OBGYN, Maternal Fetal Medicine specialists, NICU providers, and developmental pediatricians. I remain especially grateful for Dr. Megan Pesch, who helped guide us through developmental concerns and long-term follow-up care as we navigated life with premature triplets affected by congenital CMV.

Our family continues to follow closely with audiology to monitor for hearing loss, one of the many ongoing uncertainties associated with congenital CMV. Every audiology appointment feels emotionally heavy. I find myself holding my breath until the providers walk in and tell me the boys passed their tests again. That lingering uncertainty is one of the hardest parts of this journey — constantly waiting to see whether another complication will emerge.

Beyond hearing concerns, our family also navigates autism, sensory processing disorder, bronchopulmonary dysplasia, hypermobility disorder, type 1 diabetes, and previously CMV-related lung complications that have since resolved. Many of these diagnoses came gradually over time, making it feel like we are constantly adapting to “one more thing.” Still, having time to process each challenge individually has helped us move forward step by step.

Support from family and friends has been invaluable, but the National CMV Foundation and the CCA program have also provided an entirely different level of understanding. Sometimes, when speaking with friends, coworkers, or extended family, it can feel difficult to fully explain the emotional and medical complexities of CMV without sounding overly worried or ungrateful. Connecting with other CMV families removes that barrier because they already understand the unknowns and anxieties that come with the diagnosis.

I do wish there was greater understanding among clinicians about the parent experience. While some providers have been incredibly supportive, there are moments when concerns feel minimized because my children may not fit the most severe presentation of congenital CMV. CMV impacts every child differently, and I believe clinicians would better support families by understanding the full scope and variability of the condition while also taking time to truly listen to parents.

As a Michigan CCA representative, I work alongside advocacy groups and families to support CMV awareness efforts throughout the state. I also help organize Michigan’s annual Strides4CMV event during CMV Awareness Month each June. In addition, I try to be available for Michigan CMV families who need resources, encouragement, or simply someone safe to talk to.

Advocacy efforts in Michigan have already led to meaningful progress. In 2024, I participated in a postcard initiative supporting Michigan HB2204, where photos and stories from CMV families were shared with state representatives to help raise awareness about congenital CMV and the families impacted by it. Being able to personally deliver those postcards to legislative offices was incredibly meaningful.

For families who want to become involved in advocacy but feel overwhelmed, I always encourage them to start small. Reaching out to a state CCA representative or connecting through the National CMV Foundation can be a great first step. Advocacy does not have to be huge to matter. Even sharing a social media post, attending a Strides4CMV event, or simply talking openly about CMV helps raise awareness.

What gives me hope right now is the growing momentum behind universal screening and public education initiatives across the United States. More states are introducing legislation related to CMV screening, education, and follow-up care, and it is encouraging to see so many advocates pushing for change.

To me, a truly equitable system would include universal newborn screening for congenital CMV, ensuring that all babies have access to early diagnosis and intervention regardless of where they are born. I also believe every pregnant woman and family should receive CMV education during pregnancy. OB/GYNs should routinely discuss CMV prevention and awareness with patients, and schools and childcare centers should educate staff and families about the virus as well.

Pediatricians also play a critical role in supporting long-term follow-up care and advocating for services. CMV-related needs vary greatly from child to child, and families often know exactly what support their children need to thrive. Public health systems should also become more involved in legislation, advocacy, and public education surrounding congenital CMV.

To parents who have just received a CMV diagnosis, the first thing I would want them to hear is: “It’s not your fault.”

And to clinicians, I would simply say this: listen to families. Continuing education around CMV matters, but feeling heard matters too. When families feel dismissed, advocacy becomes even harder. Parents carry an enormous amount of knowledge about their children, and taking the time to truly listen can make a tremendous difference.

During CMV Awareness Month, every person can help make an impact by sharing information, attending awareness events, or simply starting conversations about congenital CMV. Awareness can be small or large — every effort matters.

At the heart of all of this is one belief: geography should never determine the quality of care a child receives. Every family deserves access to education, screening, early intervention, and compassionate support no matter where they live.

Being a CMV mom and advocate is not easy, but it is absolutely worth it. CMV looks different for every family. For me, it looks like three resilient boys who would not be who they are today without early intervention, advocacy, and the support of those who believed in them from the beginning.

 

Elliot, Ian, and Oliver are going to be 5-years-old and starting Kindergarten in the fall. They love playing rough with their big brother and digging in the dirt. CMV has given our family the ability to educate and advocate to #stopCMV.