SPRINGFIELD, Ill. — Jessica Hurley looked at the pile of medical bills in her bag as she held one of her twin babies, blue from lack of oxygen, in the neonatal intensive care unit.
She prayed that the boys, Perry and Kinser — born prematurely at 32 weeks — would survive.
About a month had passed since a traumatic birth in which she had delivered Kinser naturally, then Perry by C-section. She and her husband, Jimmy, had two other children to care for, ages 2 and 13. On top of that, there was another source of anxiety: How would they pay for the mounting costs of childbirth? And why were the bills so high when they had insurance?
“I was getting bills from the lab, I was getting bills from the hospital, I was getting bills from the medical group, I was getting bills from radiology,” Jessica said. “It was a full-time job trying to figure it out, and I’m trying to keep my babies alive.”
The Hurleys’ income was too high to qualify for Medicaid in Illinois, where they live. But their insurance plan — provided through Jimmy’s union — has a deductible of up to $28,500 for in-network services.
That puts them in a vulnerable category of middle-class families: those who earn too much for Medicaid but can’t afford or don’t have access to insurance plans that adequately cover expensive childbirth.
That group has been left behind by major health care reforms in recent years. Medicaid expansions for new parents that many states have enacted since 2022 don’t apply to them. The No Surprises Act, which went into effect that same year, hasn’t entirely prevented surprise bills. And the Affordable Care Act still allows for high out-of-pocket costs.
In interviews, more than 20 experts on medical debt, insurance and health care policy pointed to systemic flaws in the private insurance system that leave families like the Hurleys with huge bills after giving birth. High deductibles — the amount people have to pay before their insurance will cover some of their medical costs — are a primary problem. More than half of private-sector workers with insurance through their jobs had high deductibles (at least $3,200 for a family, according to the IRS definition) last year, compared with just over a third in 2014, according to the Bureau of Labor Statistics.
The risk of medical debt during childbirth is therefore high for such families, especially if complications arise. Pregnancy, by its very nature, is both common and risky. Pregnant patients typically visit multiple providers over the course of nine months, during which time deductibles often reset. Childbirth and postpartum care come at a cost to both parent and baby. And in the first weeks of a newborn’s life, parents have little time or energy to scrutinize insurance claims or dispute charges.
“The people who really get the highest out-of-pocket costs relative to their income are low- and middle-income individuals with private insurance,” says Dr. Nora Becker, a health economist at the University of Michigan.
Kinser Hurley was discharged from the NICU in January 2023 at 40 days old, followed by Perry at 68 days the following month. But that was just the beginning of the Hurleys’ struggle to reduce their medical bills — a challenge that continues to plague them nearly two years later.
Jessica owed various health care providers for her pregnancy, delivery, and the twins’ NICU stay totaled nearly $38,000, nearly a quarter of her family’s income.
“I just didn’t think it was fair. I have to file for bankruptcy. They tried to tell me I had to pay all of this in a year, but that’s impossible,” she said.
The Hurley family..
The Hurleys are among the families who spoke to NBC News about the medical debt they incurred after giving birth, even though they had private insurance. The families shared more than 180 documents detailing a maze of bills and claims, all of which made it nearly impossible to know for sure what they owed and why.
Debt has threatened their ability to survive, strained their marriages, made it hard to afford clothes and toys, and encouraged them to avoid doctor visits.
“It keeps me from going to the doctor because I’m afraid of the bills I might get,” Jessica said. “I go when I really have to.”
When the ACA Doesn’t Protect You
Jessica works as a dental hygienist and Jimmy runs an asphalt company. Their Springfield, Illinois, home is decorated with family photos and messages like “Today I’m going to be thankful and make memories.”
On a recent afternoon, while the children were still in school and daycare, Jessica crossed her legs on the couch and cried.
“I feel guilty that I have twins, and then I feel guilty because I love them,” she said. “You think, ‘What if none of this had happened, these horrible things?’ But then I think, ‘I have these beautiful boys, and they’ve made my 4-year-old so happy.’ But yeah, I can see why people don’t want kids.”
The Hurleys eventually had their bills reprocessed and received financial assistance from the hospital. But they were still responsible for nearly $11,500, of which they paid about $3,300.
The family’s high medical bills stemmed in part from the nature of their insurance plan, which had a low deductible of $375 but an unusually high deductible — the total amount a family must pay in a year before the plan covers 100 percent of medical expenses. After a deductible is reached, an insurance company typically pays a portion of subsequent medical claims (known as co-insurance) until that maximum is reached.
The Affordable Care Act requires insurers to cover maternity care and limits a family’s deductible to $18,900. But that limit does not apply to plans that are short-term or considered grandfathered because they existed before the law was passed.
The Hurleys’ plan fell into that latter category.
The ACA also does not prevent insurance companies from denying coverage for services they deem unnecessary, although patients can appeal. Jessica’s insurance company, Central Laborers’ Welfare Fund, denied coverage for a costly service that helped the twins transition from feeding tubes to bottles in the NICU. The fund said it does not respond to media inquiries as a matter of policy.
In addition, Kinser and Perry were born in late 2022, so the family’s annual coverage began again while the twins were receiving care. According to a June study, patients whose pregnancies, deliveries or hospital stays last two years pay an average of $1,310 more than they would have if all the costs had been incurred in the same year.
Bills, diapers and wipes lie on the counter at the Hurley home.
Hospital Sisters Health System, which runs the hospital where Jessica gave birth, said it does not comment on specific patients but is “committed to transparency and accuracy in our billing practices.”
SIU Medicine, a medical provider that partners with the hospital, reduced Jessica’s bills by about $3,700 after NBC News contacted her. SIU said the discount was given to match the rate of financial assistance Jessica received from the hospital.
“Patients may be eligible for financial assistance regardless of whether they have insurance or not, and eligibility is based on family income and family size,” Lauren Crocks, communications director for SUI Medicine, said in an email.
To cover their medical bills, childcare costs, and Jessica’s reduced income from being unemployed during the final stages of her pregnancy, the Hurleys began making minimal payments on their credit cards, which has resulted in them racking up about $18,000 in credit card debt since the twins were born.
Better off with Medicaid
People with insurance through their employer pay an average of about $3,600 out of pocket for prenatal, delivery, and postnatal services, according to data provided to NBC News by the Health Care Cost Institute. But for about a quarter of the births analyzed, the cost exceeds $5,000.
People with Medicaid, on the other hand, generally have no out-of-pocket costs, as the program prohibits cost-sharing, including deductibles, for pregnancy-related services until 60 days after delivery.
Pregnant people nationwide are eligible for Medicaid if their income is 138 percent or less of the poverty level — up to $36,000 a year for a family of three. But 34 states and Washington, D.C., have set the threshold for Medicaid or Children’s Health Insurance Program coverage at or above 200 percent, according to KFF, a nonprofit health care organization. And all but two states have adopted Medicaid coverage that lasts for a year after birth.
Becky Munge, a mother of three in Morton, Illinois, was on Medicaid when she gave birth to her first two children and can’t remember paying a single bill for the health care she received then.
But that wasn’t the case when she had her daughter, Jovie, in 2021. After a life-threatening delivery, Becky went into cardiac arrest and suffered internal bleeding after her placenta, which was stuck in her uterine wall, was removed. She was intubated and underwent multiple surgeries. When her organs began to fail, doctors asked her husband, Cole, and older children, Gavin and Ava, to say goodbye.
Jovie was in the NICU, but doctors let her see her mother.
“They wanted her to at least have skin-to-skin if I died,” Becky said.
Becky recovered, and she and Jovie were discharged within a day of each other. But while she was in the hospital, Becky developed a bone infection that ultimately required nine arm surgeries.
The Munges pay $1,300 a month in premiums for an insurance plan with a $3,000 deductible and a maximum of $12,500 out of pocket.
For the complicated delivery and Jovie’s NICU stay, they ended up paying the hospital $8,000, after insurance covered about $1 million in medical expenses.
Separately, Becky received treatment for her bone infection at the Mayo Clinic in Rochester, Minnesota; they still owe nearly $4,000 after paying about $1,000 so far.
The Mayo Clinic said it has no authority over insurance coverage decisions. In a statement, Blue Cross and Blue Shield of Illinois, the couple’s insurance company, said, “we work directly with members and do not comment publicly on their cases.”
Becky Munge holds Jovie in the hospital.
By putting their medical expenses ahead of other expenses, the Munges have racked up about $55,000 in credit card debt and drained their retirement accounts.
“If we don’t get the debt under control, we’re going to have to file for bankruptcy right now,” Becky said. “That’s a huge burden on our shoulders.”
Like the Hurleys, the Munges are middle class. Cole is a self-employed insurance agent. Before her health problems kept her from working, Becky was an orthodontic assistant. The family lives in a three-bedroom ranch-style home.
“We’re not poor, but we’re certainly not rich, and we’re still struggling,” Becky said. “I wish I made less money so I could get more benefits, because I’m actually more in debt now.”
The Challenge of High Deductibles
Of all the reasons a family might face medical debt from childbirth, high deductibles are one of the most common.
“In the past, many employees had health insurance with a zero deductible, but that’s less true today. Most private employer health plans have a general deductible,” says Dr. Adam Gaffney, a critical care physician at Cambridge Health Alliance in Massachusetts who studies medical debt. In the early 1980s, only 30% of private insurance plans had a deductible for hospitalizations, his research shows.
Wesley Bruce and Ashley Perez’s plan had a $7,000 deductible and a $13,000 deductible when she got pregnant. They knew the delivery would be expensive, so they put money aside in a health savings account.
But they didn’t anticipate how complicated their medical needs would be. Their twin girls, Isla and Juno, were born prematurely in June, both with holes in their hearts, and spent about a month in the NICU. The couple’s insurance did not cover some specialty care during Perez’s pregnancy, leaving them out more than $10,000 in total.
Wesley Bruce and Ashley Perez hold their twins
Bruce, a mental health counselor, and Perez, a Ph.D. candidate in clinical psychology, are still paying off their student loans.
“I just said, ‘What can we do? We don’t have a choice,'” Perez said. “I’m never going to pay off all of our debt, so add the hospital debt on top of that. I don’t even know, just pile it on top of that.”
The couple raided their health care savings account and asked for donations from family members to help pay for their medical bills.
But then in September, a stroke of luck: Perez qualified for financial assistance from the hospital system, Sanford Health, and their balance dropped to zero. NBC News contacted Sanford Health this month and the couple was subsequently reimbursed about $7,000 they had already paid.
“We are committed to ensuring that patients receive high-quality care regardless of their ability to pay, and to providing financial assistance to those who need it most,” Nick Olson, Sanford Health’s chief financial officer, said in a statement.
Nonprofit hospitals like Sanford Health are required by law to provide “charitable care” in the form of discounted or waived fees. Eligibility varies by hospital, but many require patients to have incomes of 400 percent of the poverty level or lower. Because some of those patients are on Medicaid, it’s unclear how many people benefit from the policy.
Becker called the system the “Wild West.”
Imposing a federal requirement for hospitals to offer a minimum threshold for financial assistance could make childbirth more affordable, she said. Another policy on her wish list: requiring employers to offer insurance plans with varying coverage based on people’s income.
“In principle, we could solve this problem if we as a society decided that this was a problem we wanted to solve,” she said.
But other changes, like eliminating deductibles altogether or even instituting universal health care, feel impractical, if not impossible. And any changes would come too late for families already overwhelmed by debt.
Jessica Hurley’s medical debt is something she’s tried to avoid her entire life — her own mother struggled to pay medical bills after Jessica’s father died in a car accident. Despite her best efforts, she said, “I was in a similar situation.”
She’s terrified that another medical emergency will land one of her family members in the hospital. She said her debt has already caused her to delay addressing health issues that aren’t emergencies.
Jessica has canceled her own physical therapy appointments because of hip pain after giving birth. Last week, she waited several days to take Kinser to the emergency room after he developed a rash on his face and cold-like symptoms. Meanwhile, the doctor keeps calling to schedule a follow-up appointment for eczema on Perry’s feet, but Jessica tries to manage it herself by applying cream and keeping his socks on.
“Every doctor’s appointment — I worry about every appointment — what’s going to be covered? What’s going to be adjusted?” she said. “Am I getting another bill?”
This article was produced in partnership with the USC Annenberg Center for Health Journalism’s 2024 National Fellowship Fund for Reporting on Child Well-being.