Families grieving a pregnancy loss hit especially hard by medical bills: ‘I wasn’t prepared at all’

Crumpled in a hospital waiting room chair, Alyssa Collier squeezed shut her bloodshot eyes, begging the dark to shut out her thoughts.

Instead, she saw the last nine weeks play out like a movie: The countdown to flipping over the at-home pregnancy test; the way her husband reacted as if he’d won the lottery when she told him the news; how hard they both laughed when their two toddlers pleaded to go pick up their new baby brother or sister at Target, their favorite store where all good things come from.

The second ultrasound, when the doctor couldn’t find a heartbeat.

Miscarriage is common — 10 percent to 25 percent of pregnancies end that way — and in a few days her body would expel the remains of her pregnancy, Collier’s doctor told her.

But after a week and a half, that hadn’t happened. So Collier, then 27, of Doylestown, returned to her doctor for a procedure to clear her womb of the baby it had rejected.

As she waited, Collier worried about how much the procedure might hurt, whether she’d have the strength to care for the kids at home, if this hollow feeling would ever go away.

It never occurred to her to worry about the bills.

Health insurance plans are required to cover pregnancy and childbirth to a certain extent. But families can easily rack up thousands of dollars in medical bills for extra ultrasounds, tests, and procedures that aren’t covered in full by their plan. Similarly, the procedure Collier had after her miscarriage, a dilation and curettage (D&C), was covered by insurance — but not entirely.

The financial burden can shock young adults whose first encounter with the high cost of health care and callousness of medical billing comes at a time when they are emotionally raw. For families wracked with grief, having to open medical bills, argue with insurance companies over confusing and erroneous charges, and find money to pay for a child who never came home can feel especially cruel.

In some cases, losing a child can cost more out of pocket than giving birth to one.

A year earlier, the birth of Collier’s second child was covered almost entirely by insurance, save for a few co-pays.

This time was different — the bills just kept coming.

Collier owed the hospital $125 for the D&C, plus $100 for an ER trip to treat a post-procedure infection and $40 for medications to treat it.

She opted for genetic testing to seek clues to the miscarriage, and was originally billed $6,000, which insurance wouldn’t cover. She persuaded the lab to reduce the bill to $250.

“It’s disgusting and kind of sad,” she said. “I was surprised because to me it’s the same concept as giving birth. I wasn’t prepared at all.”

Because pregnancy care is considered an essential health benefit that plans are required to cover, many insurance companies will “bundle” basic services that every expecting mother will need, such as a certain number of prenatal visits and ultrasounds, the birth (so long as there are no complications), and a postnatal checkup, said Carrie Ann Terrell, an assistant professor and division director of general ob-gyn at University of Minnesota Medical School.

But when a pregnancy ends early, the bundle breaks. Women may be billed a la carte for each individual service they received before losing the pregnancy, which could end up costing more than the entire bundle, she said.

Similarly, insurers often negotiate birth “bundles” with hospitals that group together services new mothers receive while in the maternity ward, such as a lactation consultant and nursery fee, said Dania Palanker, an assistant research professor at Georgetown University’s Center on Health Insurance Reforms.

Women who lose their baby more than 20 weeks into the pregnancy typically have an induced labor or cesarean section surgery — technically constituting a birth, though they won’t need some of the bundled services intended for babies who live.

“In many cases, women’s health has not been prominent in negotiating with insurance companies. We don’t have good lobbyists and good ways to control or improve how health insurance companies decide to pay for anything — let alone women’s health,” Terrell said.

What is included in the bundle varies from one plan to the next, and it can be hard to know what you’ve been charged for.

Patients can ask for an itemized bill detailing every charge and challenge any items they did not receive. But negotiating a medical bill at a time of such great emotional loss can be exceptionally difficult.

“It can almost cause a form of post-traumatic stress disorder. It can rekindle the negativity around the experience weeks or months later,” Terrell said.

Jodi Laughlin, 30, had no idea her insurance plan had initially denied coverage for some of the care she received during a difficult pregnancy in 2016. The insurer even refused to cover the hospital stay when, at 30 weeks, she had an emergency C-section, reasoning it wasn’t medically necessary.

Noelle Laughlin lived just 32 minutes. Her organs weren’t sufficiently developed because of a condition that caused excess fluid to build up in her body.

Jodi’s husband, Alex, initially kept the bills from his grieving wife.

“I remember thinking I don’t want Jodi to put eyes on this,” Alex, 31, said of the pile of bills. “I was just in disbelief — there’s no chance that they have the whole story.”

Their insurer, Cigna, initially denied coverage of two procedures that doctors performed before Noelle’s birth to drain the fluid – billed at $16,500 and $26,450 — also deemed not medically necessary.

After the benefit management firm that handled Alex’s employer-sponsored health plan appealed on the Laughlins’ behalf, the couple ended up paying about $4,000 for the pregnancy, birth, and genetic tests.

Another $2,000 went to a funeral for Noelle, who will be buried at a new mausoleum being built near their Riverton, N.J., home. Jodi and Alex have reserved places for themselves alongside their daughter.

For many young parents, childbirth is their first foray into the world of high-cost health care. They may be unprepared, especially if, as in the case of a miscarriage, the bills come sooner than anticipated.

“They may have been budgeting for the birth. If this is four or five months ahead of schedule, it can hit you,” Palanker said.

Paying those bills can be challenging for working women who had been counting on parental leave after giving birth.

The United States does not have a standard parental leave policy, which means some may find their company doesn’t offer paid time off for a miscarriage, said Jeff Hayes, a program director at the Washington-based Institute for Women’s Policy Research.

Federal law requires most large companies to grant unpaid time off for serious medical conditions, and a miscarriage or stillbirth would certainly count as such. But about 40 percent of the workforce is employed by a company that isn’t subject to the law, which leaves lots of women, Collier included, in a tough position.

Collier’s insurance covered the bulk of her medical bills, leaving her with about $600 to pay. But even that relatively modest amount proved impossible for a waitress who went more than a week without pay while recovering from the D&C and infection.

“They monitor your every move after birth for postpartum [depression], but if you miscarry, you’re on your own,” said Collier, who is separated from her husband. “You’re left on your own to deal with it emotionally and financially.”

Two years later, Collier still owes $325 for her ER visit and the genetic testing. It’s in collections.

>>UPDATE: Doylestown mom ‘stunned’ after Inquirer reader pays miscarriage bills

The Laughlins were able to pay Jodi’s medical bills and were grateful for the family that flocked around them in support, but still the months that followed were among their most difficult.

Worried how families without their means would cope, they established a foundation to provide financial and emotional support to women carrying a child with life-threatening conditions. Noelle’s Light launched a fund-raising campaign with the Philadelphia Ronald McDonald House earlier this year.

“Being able to turn it into something positive is great. But even if you can’t do that, just to not feel alone is important,” Jodi said.

The experience has been empowering, Jodi said, and helped them to believe that they are moving forward without leaving Noelle behind.

Genetic tests revealed a 25 percent chance that the same condition that killed Noelle would occur again, so the couple began the financially and emotionally trying process of in vitro fertilization.

In March 2018, after spending $19,000 out of pocket on fertility treatments, Jodi gave birth to Noelle’s little sister, Lily.

“When I was pregnant with Lily, I had several dreams where the baby was born and the room was filled with the baby’s cry. I think it was because I didn’t hear Noelle cry and so that was a huge fear of mine going into this birth. Lily did not disappoint. She had the most beautiful, distinct cry I have ever heard,” Jodi wrote in a blog she started after Noelle’s death. “It was my dream come true.”