Eric Brown and his wife, Stacey, were stunned to learn that Stacey was pregnant again and even more surprised that not one — not two — but three more babies were on the way.
“They were naturally conceived, so this was a complete and total surprise,” said Mr. Brown, 37, a high school special education teacher. He and his wife, who live in College Station, Texas, about 90 miles northwest of Houston, already had two children.
The second trimester did not go smoothly: Ms. Brown developed infections that led to an unplanned cesarean section at the Woman’s Hospital of Texas in Houston. The triplets were delivered at 28 weeks and 5 days in September 2017 and stayed in the neonatal intensive care unit for months.
[Advice on how to handle your baby’s stay in the NICU.]
The Browns had good insurance through Ms. Brown’s job as a pre-K teacher at a public school, but their hospital bills were staggering: Their triplets’ care had cost more than $4 million, leaving them with thousands of dollars in out-of-pocket costs.
To make matters worse, Ms. Brown had no paid maternity leave and used up all of her sick days by the time the triplets were 2 months old. She eventually left her job to care for them, in part because her take-home pay would have been wiped out by child care costs.
“Yes, your life is always turned upside down when you have a child,” Mr. Brown said. “But with us, it was with the snap of a finger and a minute and a half we essentially doubled the size of our family and cut our income in half.”
The number of preterm births, or babies delivered earlier than 37 weeks, rose for the fourth year in a row in 2018, according to a November report from the National Center for Health Statistics.
And as the number of preterm births rises, so does the number of babies in the neonatal intensive care unit. Even full-term babies of normal birth weight are increasingly likely to be admitted to the NICU, according to a 2015 study of babies born between 2007 and 2012.
“I’ve been to a lot of NICUs and we’re partners with a lot of them. It’s rare to hear that a NICU is not at close to 100 percent capacity,” said Stacey D. Stewart, the president and chief executive of March of Dimes.
The March of Dimes estimates that the average societal cost of each preterm birth, which includes medical care, early intervention services and lost productivity, is $65,000. But there is very little research on the costs shouldered by families.
For many families, Medicaid and Supplemental Security Income, or S.S.I. (a program administered by the Social Security Administration that pays benefits to disabled adults and children), help cover the medical bills.
“It would literally crush families if it were not for the support of Medicaid and S.S.I.,” Ms. Stewart said.
For families with private insurance, the good news is that plans compliant with the Affordable Care Act prohibit a cap on lifetime and annual benefits.
But coverage in the private insurance market has shrunk so badly over the last several decades that “nothing can guarantee that these families are protected,” said Sara Rosenbaum, a professor of health law and policy at George Washington University.
Costs that those covered must pay, including deductibles, coinsurance and out-of-pocket maximums, have risen in recent years. And for families who do not qualify for Medicaid — the rules of eligibility differ depending on where you live — the out-of-pocket costs of NICU care, as well as maternity care and any necessary at-home rehabilitative services, can become a huge burden in the midst of what is already a stressful and exhausting ordeal.
Regardless of what type of insurance a family has, the nonmedical costs add up, too. Parents who live far from the hospital need to pay for transportation, meals and child care costs for older siblings. In the meantime, they are often bringing in less income because they are either unable to return to work or are working fewer hours in order to care for their newborn in the hospital.
The Browns’ babies each weighed more than 3 pounds when they were delivered, so they didn’t qualify to receive S.S.I., which would have automatically allowed them to receive Medicaid in their state.
Although Ms. Brown’s insurance, Blue Cross Blue Shield Texas, paid the bulk of the medical bills for herself and her babies, the Browns were still responsible for thousands of dollars — they quickly reached their out-of-pocket maximum, which is currently $13,000 for in-network providers in their plan. In addition, they are still paying off a bill from one of their neonatologists.
Their transportation charges also increased. During the two months the babies were in the NICU, Mr. Brown drove about 6,000 miles to and from the hospital in Houston.
Their community offered to help in ways big and small. Ms. Brown, who wasn’t allowed to drive after her C-section, stayed with a retired couple in Houston who drove her to the hospital every day that Mr. Brown was not in town. Friends and family held fund-raisers and sold T-shirts to raise money. Sometimes Mr. Brown would come home to find gas cards sitting on the porch. A friend of a friend helped them negotiate Ms. Brown’s nearly $44,000 air ambulance bill (she was flown to Houston from College Station) down to zero.
After Ms. Brown resigned from her job at the end of 2017, the Browns’ reduced income made the children eligible for Medicaid, which helped cover the coinsurance bills, among other costs.
But their new Medicaid coverage could be backdated only three months, so it did not cover September, the month the triplets were born, presenting “another double whammy,” Mr. Brown said.
Even so, with some careful budgeting, and help from the fund-raisers, the Browns expect to have all their bills paid off by the end of this year. The triplets, all girls, are healthy and “absolutely wonderful,” Mr. Brown said.
For some families, the nonmedical costs of prematurity are the biggest hurdle.
“It was a lot. It was a big toll on me,” said Kathy Canarte, 28, of Waukegan, Ill., whose daughter, Dahlia, was in the neonatal intensive care unit for three and a half months last year after being born at 28 weeks.
“I’m a person that likes to plan ahead,” she said. “So when I found out I was pregnant, I started planning financially — so the fact that she came so early was like, ‘Oh. Oh, no.’ Everything that I had planned was kind of like bumped away.”
[Read more about the ongoing trauma of prematurity.]
Her finances began to deteriorate at the beginning of her pregnancy, she said. She was so nauseated she had to quit her job as a waitress.
Ms. Canarte and her boyfriend were living with his parents at the time in Highwood, Ill., and eventually managed to save up enough to move to a home with enough space for their growing family — but not without sacrifices. After their daughter was born, gas money to visit the NICU in Evanston, Ill., was expensive. While her boyfriend was at work, Ms. Canarte took the train, then walked for 20 minutes, to visit their daughter.
“We couldn’t afford for both of us to be there all the time,” she said.
As soon as she was cleared to go back to work, she found a part-time job as a cashier at a grocery store.
Ms. Canarte applied for S.S.I. funding last July, which helps cover household expenses, but she didn’t receive any money until January.
“We had to kind of scrape by until then,” she said.
The Colette Louise Tisdahl Foundation, a nonprofit based in Chicago, helps families with children in the NICU pay nonmedical bills. Ms. Canarte received help from the organization for Lyft rides to and from the hospital and to pay the first electric bill in their new apartment.
Michelle Valiukenas started the organization in 2018 after her daughter, Colette, was born extremely prematurely and died after nine days in the neonatal intensive care unit.
The foundation “came about as a way for us to work through our grief and to keep her name and her memory alive,” she said.
In 2019 her organization helped more than 200 families in 32 states. Grants typically are about $500 to $700, Ms. Valiukenas said.
As families struggle with the costs associated with NICU care, the cost of giving birth has also risen. For women with employer-based health insurance, the average amount spent out of pocket for maternity care increased to $4,569 in 2015 from $3,069 in 2008, according to a study published in January in the journal Health Affairs. During the same time period, the standardized cost of maternity care remained stable, the study found, which means patients were paying a higher proportion of costs on average.
“Most of my patients don’t have $4,500 just waiting around,” said Dr. Michelle H. Moniz, an ob-gyn at Von Voigtlander Women’s Hospital at the University of Michigan and the lead author of the study.
The rise in out-of-pocket costs was largely driven by an increase in deductible payments, the study said.
Alison Tiedke, the president of the National Association of Perinatal Social Workers, recommended that families contact the medical assistance ombudsman in their state or county to see what kind of financial help might be available. Many hospitals also have a financial support plan to help families manage bills like the out-of-pocket deductible, she said.
Several other organizations similar to the Colette Louise Tisdahl Foundation can help families cover costs associated with prematurity, including NICU Helping Hands and Graham’s Foundation.
Finally, even if you have private insurance, don’t rule out the possibility of programs like Medicaid.
Even if a child’s parents are not eligible for Medicaid, the child might qualify for either Medicaid or the Children’s Health Insurance Program, which provides health coverage to children whose families earn too much money to qualify for Medicaid.
In addition, because Medicaid eligibility is typically based on the poverty level and poverty level income varies based on family size, the addition of one or more children can change a family’s eligibility, said Dania Palanker, an assistant research professor at Georgetown University’s Health Policy Institute.
Ms. Canarte relied on Medicaid to pay their medical bills, and her daughter, now 9 months old, is thriving at home with regular visits from physical therapists. But Ms. Canarte won’t soon forget the stress of the neonatal intensive care unit.
“It haunts you for a while, definitely,” she said.
