After their seven-month-old son James died in hospice nearly three years ago, the Cavatores face hundreds of thousands in medical bills – despite having insurance

Twins Thomas and James Cavatore were only about a month old in winter 2016, still in the neonatal intensive care unit at a Houston, Texas, hospital, when the bills started rolling in. Just as steadily as Thomas improved, James deteriorated, undergoing nearly a dozen operations and as many emergency room visits during his short life.

James was just seven months old when he died in hospice. But the Cavatore family would be haunted by an avalanche of bills for years to come, despite having medical insurance.

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“I got one bill, and it was $1.1m,” said Federico Cavatore, the boys’ father. “I joked to myself, I said, I’m going to frame this and put it in Thomas’ room and say, ‘This is why you’re getting a scholarship to college.’”

The Cavatore family’s situation is a graphic illustration of an American health system, where medical bills can feel like a second trauma, even for those who have health insurance. It can financially break those who don’t.

For the Cavatores the uncertainty and bills were part of how their health insurance was designed to function, and part of a larger trend of private health plans pushing costs on to patients.

The Cavatores were hit with “surprise bills”, expenses for medical supplies, co-payments and deductibles, and calls from bill collectors. James’ birth and treatment probably cost the family close to $38,000 out-of-pocket, though they were served with bills charging them many times that amount, forcing them to spend hours challenging the claims and bringing their financial costs down, even as their emotional costs spiraled upwards.

Facebook Twitter Pinterest Elle Cavatore poses with her boys, Thomas, left, and Patrick at their home in Houston, Texas. Photograph: Daniel Kramer/The Guardian

Even now, nearly three years after James’ death, it is unclear whether the family still owes money to doctors and the hospital where James was treated, Memorial Hermann. Their story is emblematic of America’s deeply flawed healthcare system, similar versions of which play out every day, in every corner of the country.

“Almost everything in health economics in the US is complex, difficult to explain and somewhat arbitrary and idiosyncratic,” said Dr John Lantos, a bioethicist and expert in neonatal intensive care units.

In the US health system, “everybody’s always getting ridiculous bills that they thought were covered by their insurance”, said Lantos. “I never pay attention to any medical bills I get for six months, because it seems like it takes that long for the hospital to deal with the doctor.”

James’ first stint in NICU lasted 99 days, from his birth in December to April 2016, and cost more than $774,000 for hospital facility charges alone. Over the course of James’ multiple emergency room visits and surgeries, hospital charges alone cost more than $956,000.

But that hardly accounted for all bills. Physicians in Texas, even those whose specialized skills are only available in hospital settings, don’t work for hospitals. They charge separately, and are exempt from not-for-profit hospital “charity” policies. Feeding bags, night nurses and out-of-network providers were also their own category of bills.

Nearly three years after James’ death, the family has been unable to determine exactly how much they might owe, or have paid.

In one typical insurance document the Cavatores received, called an “explanation of benefits” by their insurance company, they were told that as of October 2016 they “may or may not have to pay” $387,270.69 to doctors and hospitals.

In March 2018, Federico was told the family’s balance was “zeroed out”. As recently as January 2019, Elle Cavatore said she received a phone call from Memorial Hermann asking for $11,000 for the twins’ care. The hospital offered a “payment plan”. Insurance documents described bills for hundreds of thousands of dollars the family “may or may not have to pay”.

I need to close it in my own mind, and move on from this, but it’s continuous Federico Cavatore

“I need to close it in my own mind, and move on from this, but it’s continuous,” Federico said.

The Guardian could not determine an exact amount the Cavatores may owe because of restrictions on patient records and the large number of providers involved in their case. Although the Cavatores gave the Guardian access to hospital records to tell this story, Memorial Hermann declined to comment, citing patient privacy.

“While we are unable to comment specifically due to patient privacy, we express our deepest sympathies for the loss this family has suffered,” Memorial Hermann Health System said in a statement. “We recognize that healthcare billing can be complex and, like many health systems, we are committed to helping patients and their families better navigate the billing process and to making care more affordable for all.”

The Cavatores’ journey began when Elle found out she was pregnant. A 38-year-old human resources worker, she had good insurance through a supportive job.

But she found out early in the pregnancy her twins were “mono-mono” or “momo” – short for monochorionic-monoamniotic twins who grow in the same amniotic sac. James and Thomas were so close in the womb her obstetrician initially thought they were conjoined, Elle said.

Facebook Twitter Pinterest Elle Cavatore with her youngest son, Thomas, at their home in Houston, Texas. Photograph: Daniel Kramer/The Guardian

“They were nervous enough to have me go in for monitoring,” said Elle. During one of those visits, “one of the hearts stopped” momentarily, “a few seconds”. Elle was immediately sent to a hospital maternity ward, where she was on bed rest for nearly five weeks.

One day her husband came to visit, and in hopes of private time, she asked a nurse to check the twins’ vitals early.

“I’m so glad I did, because if I hadn’t said, ‘Do it right then’, they probably would have both died,” Elle said. “Right at the moment she put the monitor on my stomach, she noticed one of the heart rates was going up, and accelerating and then decelerating.”

The babies’ umbilical cords had twisted. With both babies in the same amniotic sack, doctors couldn’t figure out which child was under stress, so they rushed to deliver. Aides cut off Elle’s clothes and she was put under anesthesia for an emergency cesarean section.

“The next thing, when I woke up, the babies had been born,” said Elle. The babies were delivered at exactly 28 weeks and six days. Thomas was 2lb 9oz, and James was 2lb 12oz.

Both babies immediately went to the neonatal intensive care unit, a hospital ward with ultra-specialized equipment and staff designed to care for tiny babies. Both breathed through tubes and lay in incubators with round-the-clock nursing. The Cavatores could not hold their children.

It soon became apparent James was much sicker than Thomas. Within two weeks, James needed cardiac surgery to help a heart valve close, a chest tube to breathe, surgery for a tear in his intestines, and was later diagnosed with retinopathy, a condition which left him blind.

But by far the most serious complication James faced was severe bleeding in the brain. James had a grade IV intraventricular hemorrhage (IVH), a condition where tiny vessels around the brain’s spinal fluid-filled areas – called ventricles – rupture.

To relieve the condition, a shunt is placed. This is a tube which drains spinal fluid from the brain to the belly, regulating pressure. The risks accompanying these surgeries are profound.

The high price of caring for James quickly became apparent.

Over the course of seven months, James underwent nearly a dozen surgeries, as his parents attempted to cope with the pressures of caring for a child with overwhelming needs and overwhelming costs.

“My pediatrician said: ‘You should be eligible for 24-hour nursing with the feeding tube and not being able to sleep, because you had to feed him every five hours,’” said Elle, “But they said we made too much money to be eligible for that. We were paying a night nurse just a couple nights a week so we could have two nights a week to sleep.”

Every feeding bag cost the family $5. They used about four a day. Then there was special formula. Once, James’ two-year-old older brother pulled out one of his brother’s tubes, called a Mic-Key button, and he had to be rushed to the emergency room. All of it costs money.

“They recommended we have [physical] therapy three times a week for both [twins],” said Elle. “But you only are allotted a certain number of visits [by insurance], and then you’re paying out of pocket, and it’s expensive, too. You want the best for your child.”

Night nurses rarely lasted two weeks. Elle suspected they were scared by the child’s fragile condition. Her stepsister helped pay for medical supplies and bills.

After three months of maternity leave – something just 15% of American workers receive – Cavatore left her job to care for the twins full-time. As a result, the family was forced to switch from employer-provided insurance to the individual marketplace commonly called Obamacare, a pejorative used by Republicans to describe the safety net which caught the Cavatore family.

“I was sitting outside the NICU trying to figure out what to do,” said Federico, about how to pick a health insurance policy. When they switched to Obamacare, the family was suddenly forced to pay $1,600 a month to maintain health insurance. “We paid that for a year.”

Facebook Twitter Pinterest Elle Cavatore: ‘We were paying a night nurse just a couple nights a week so we could have two nights a week to sleep.’ Photograph: Daniel Kramer/The Guardian

During this time, the Cavatores said they were able to ignore the letters demanding money. But the burden became greater with the phone calls.

“I [would] just get calls from random different collectors like: ‘You owe this from the gastroenterologist’ and ‘You owe this to the ophthalmologist’,” said Elle.

“It mean it was like survival mode for us,” said Federico. “I felt like it was all about the money. It was a horrible experience.”

They were ripe targets for fraud. With so many bills at once, it was impossible to sort which were legitimate, which they should pay right away and which might eventually be resolved by their insurance plan.

It was during this time some of her highest bills rolled in – including $387,270.69 from Memorial Hermann, from a time when Elle was listed as uninsured in their system.

After months of sleeping in the NICU, bringing James to the emergency room every week or so, of sleepless nights, midnight phone calls from nurses, heart-wrenching decisions for one brutal surgery after another, James developed bacterial meningitis, which caused swelling of the tissues surrounding his brain and spinal cord.

“By that time he was just in such bad shape. They were giving him anti-seizure medications,” said Elle. “He looked so beaten and bruised up … One neurologist had given me a pretty rosy outlook.”

Then, a new doctor came in the room.

“She just announced to us: ‘I don’t expect him to walk, talk, he is deaf, blind – I can’t see why they told you that,’” said Elle. “I just burst into tears.”

It was nearly the end of the road.

To put their son in hospice, the Cavatores had to argue their position before the hospital’s ethics board, before residents and physicians. Among the panel, just one physician wanted to operate again. Memorial Hermann would not confirm or deny this portion of the Cavatore’s case, citing patient privacy.

The hardest thing I’ve ever had to do in my life is talk about wanting to put my son in hospice Federico Cavatore

“The hardest thing I’ve ever had to do in my life is talk about wanting to put my son in hospice,” said Federico. “Knowing this was the best thing for him because he was suffering, and they wanted to keep it going.”

“If he did have any type of life, it wasn’t going to be any type of life that anybody was going to want to live, and it was going to be a year or two years,” he added.

While James was in hospice, the Cavatores received a statement from their insurance company, saying they “owe or already paid” $306,357.75. The company would not pay the claims because, the statement said, because “this dependent is not enrolled under this plan. If you can verify this dependent was effective at the time of service(s), we will reconsider this claim.”

James died two days later, on 25 July 2016.

The heroic task of caring for their son was finally over. But the bills resulting from that care were only beginning.

The Cavatores’ collision of tragedy and financial strife related to medical bills is not uncommon. It is a feature of the middle class.

More than 150 million Americans get health insurance through an employer. Although Obamacare helped expand insurance coverage in 2014, it did little to reform employer-sponsored insurance.

Facebook Twitter Pinterest Elle Cavatore at her home in Houston, Texas. Photograph: Daniel Kramer/The Guardian

Now, coverage among this group appears to be eroding. Nearly one-third of Americans who have employer-sponsored health insurance are underinsured, according to a report from the Commonwealth Fund. About half struggle to pay medical bills, and 41% delayed going to the doctor.

The Cavatores’ bills were a combination of deductibles, co-payments and “surprise bills”. Each year, the couple paid $10,000 in deductibles, a one-time payment required before insurance even kicks in.

Because they also switched insurance early in the year after Elle quit her job to care for her son, which sponsored the family’s insurance, they had to pay an additional $10,000 deductible for a new insurance plan the family purchased.

In addition, they had to pay “surprise bills”, or the cost of healthcare providers their insurance did not cover. Even though the family had insurance, hospitals and doctors negotiate separately with insurance, meaning families can often go to a hospital covered by their insurance, and see a doctor who is not.

The problem is so acute in Texas, a remarkable alliance of insurance companies and consumers groups came together to ask lawmakers to protect consumers. In some cases, people even hire professional medical billing negotiators to try to resolve these bills.

In addition to these expenses, the Cavatores’ insurance switch complicated matters. Some hospital charges appeared to be billed to an old insurance plan, rather than their new one, causing confusion and resulting in bills which it is still unclear whether they are paid today.

Those who buy insurance through Obamacare marketplaces, which the law set up for people who can’t get insurance through an employer, are even more likely to be underinsured.

There have been repeated warning calls about families facing mountainous bills after having a premature child.

As estimated 380,000 babies per year are born prematurely in the United States, about half of them to mothers on Medicaid, reserved for disabled and low-income Americans. Mothers on Medicaid are highly unlikely to receive any hospital bills.

For those with private insurance or uninsured patients, it is a different story.

“The question we face in America, like every other industrialized country and a lot of non-industrialized nations: do we collectively want to spend the money it takes to save these tiny babies? And if so, can we develop a system of financing that’s fair?” said Lantos.

“Most other countries in Europe have NICUs that are every bit as good as ours – nobody gets a bill,” said Lantos. “We in American take a different approach.”