Managing the stressors of health insurance coverage for their infant, families with children in Neonatal Intensive Care Units across the nation cite drawn out and traumatic experiences.
When my infant son was just a few weeks old in early January 2020, I was starting to settle into my role as a mother of two. There still wasn’t enough sleep to go around and we were managing classic toddler behavior with our oldest son. We were all enamored by our newest addition though—a bright-eyed baby who graced us with his presence a few weeks ahead of schedule. Like many, we looked forward to the new year and the adventures ahead.
My rose-colored new year glasses shattered quickly when I rushed my 27-day old baby to Children’s Hospital Colorado. I didn’t wait for the nurse to return my frantic call about what I should do. My maternal instinct kicked in, primed by my oldest son’s previous hospitalizations for respiratory distress. My infant displayed all of the signs—wheezing, head bobbing and labored breathing. He was working too hard to get oxygen.
The Costs of NICU Hospitalization
After an emergency room evaluation, my baby was admitted to the Neonatal Intensive Care Unit (NICU). I was told very nonchalantly that we were headed to the NICU. I had yet to fully grasp the severity of my son’s illness. At the time, I was working on a research study in the very NICU my infant son and I were about to live in for 12 days and I still didn’t realize how profoundly life-altering the experience would be for me.
The NICU is a tough place—emotionally wearing and full of uncertainty. As a parent, you wait for the next medical device to beep and watch your infant’s oxygen levels erratically shift up and down, not knowing when a nurse might need to rush in to intervene. When my son was well enough to go home, I sighed some relief. I only say some because deep down I experienced compounding anxiety about the impending medical bills and the inevitability of my son’s next illness.
Before my son was born, I knew the cost of my husband’s employer-sponsored plan was simply out of reach for our family financially. As a graduate student with limited household income and familiarity with Child Health Plan Plus (CHP+) income guidelines, I knew my son would qualify for the low-cost public insurance plan. I was grateful for access to lower premiums and out-of-pocket expenses offered through CHP+. I expected that we might owe several hundred dollars in co-pays for the NICU stay and felt assured when Kaiser, our CHP+ HMO, made payments to the providers. Our billed charges for medical services rounded out to about $180,000.
Unfortunately, my anxiety about the medical bills wasn’t unfounded—it was almost as if my maternal instinct kicked in again the moment we left the NICU, preparing me for the next exhausting chapter in our already traumatizing NICU experience: insurance claims and the coordination of benefits during an infant’s first 31 days of life.
The Mire that Is Newborn Health Insurance Laws
Two months into the pandemic, I was struggling to stay afloat. Both of my children were home full-time and indefinitely, while my husband and I attempted to work from the dining room table. I didn’t need another layer of stress and I didn’t need more added to my mental load—the new demands of pandemic life already made me feel like a pressure cooker about to explode. I also didn’t anticipate that today, 10 months later, I would continue to deal with health insurance issues for my infant son’s NICU hospitalization the previous year.
In May 2020, I first received notification that Kaiser had taken their payments back and I began to receive notifications for a “coordination of benefits.” I called the providers and the insurance company, unclear as to what benefits I was responsible for coordinating. This must be some mistake.
I did everything I was supposed to—I called the CHP+ line before my son was born to make sure he was eligible. I called them the from the hospital to add him to the plan and then I called Kaiser to select them as his CHP+ HMO. I was confused when I kept receiving coordination of benefits demands, even after I asserted that we had not elected any other health insurance plan for our infant.
I was thrust into a burdensome web of time-intensive customer service phone calls that led to more confusion and questions. No one could give me a straight answer and fault was always shifted one way or another—the insurance company who wasn’t processing the claims or the provider who wasn’t billing correctly. I was in the middle, desperately trying to figure it all out in fear of the dreaded possibility of being sent to collections for significant medical bills.
To be clear, I have the privilege of being a student right now with a flexible work schedule. I have the time to call and advocate for our rights. I’m also steeped in health policy in my academic work, so I’ve picked up some of the language needed to interact with a jargony health insurance system.
Many mothers manage their children’s health care needs and by extension engage in the emotional labor of navigating complex health insurance policies and medical billing. Some mothers may lack the time or capacity to engage in a system intent on making them cave. What does that mean for them?
After nearly six months of calls bouncing from one customer service representative to the next, we finally had an explanation for the other health insurance policy Kaiser’s investigator discovered. At the time of my son’s birth, my husband had an employer-sponsored plan offered through UnitedHealthcare—the very plan we did not elect for our newborn because of its high out-of-pocket costs and our family’s eligibility for CHP+.
Why would we elect a more expensive plan for our child when we could access the same services through a low-cost option?
Some states mandate newborn health insurance coverage for the first 31 days of life whether or not the family elects that health insurance beyond those 31 days. Colorado is one such state. Though this policy is intended to protect families financially and ensure newborns receive insurance-covered medical services in their earliest days of life, it also has unintended consequences that fall on the shoulders of consumer.
The first five days of my son’s NICU hospitalization occurred during his first 31 days of life. By law, my husband’s employer-sponsored insurance plan was responsible to be the primary payer simply because my son was eligible for it. It didn’t matter that we didn’t elect the coverage ourselves. By default, this bumped his CHP+ plan through Kaiser to secondary payer status—public health insurance will never be the primary payer if there is an existing private health insurance plan.
I felt some relief knowing that at least a part of the puzzle was resolved. I also thought the rest would fall into place and that providers would be paid appropriately by both primary and secondary insurance plans. While UnitedHealthcare has paid their contracted rate with all involved providers, I continue to receive bills for my son’s NICU care and I continue to advocate for the proper billing of our secondary insurance to cover outstanding charges. I’m finally hopeful the matter will be resolved soon—nearly a year after it began.
A Call for Health Policies that Support Families First
We aren’t the first family or the last family to be impacted by this little-known law about how insurance claims are handled during a baby’s first 31 days of life. Another couple in Kansas City recently shared their year-and-a-half long ordeal with NPR. Though not an identical experience, they shared a similarly drawn out and traumatic experience as a NICU family managing the stressors of health insurance coverage for their infant. And like us, they were trying to make the best financial decision for their family without a clear, upfront explanation of how insurance works for newborns.
I reflect on this experience as a mother first and foremost, and also as a health policy researcher and teacher who has been caught in an indecipherable system that I attempt to break down through my work. Many families will continue to end up in the NICU needing care for an infant born preterm, with congenital health conditions, or experiencing an acute illness. None of them deserve to experience both the trauma of that NICU hospitalization and the emotional distress of figuring out how to navigate health insurance coverage for their sick baby.
I’ve spent the last day reading the Colorado Revised Statutes in hopes of finding a clear answer for an incredibly exhausting and frustrating health insurance experience. Surely, I must have missed something. I still haven’t found that answer and we need to stop expecting that consumers can find an answer when the health insurance system was built for corporate bottom lines.
We need new policies to support families as they navigate health insurance for their newborns—not more weight added to the mental load of already overburdened and exhausted mothers just trying to make it through the day.
You may also like: