This Utah boy is one of the kids forced to wait for care as overcrowding delays surgeries at Primary Children’s Hospital

His mom says Utahns should have seen this coming as coronavirus cases spiked this fall.

(Rick Egan | The Salt Lake Tribune) An 11-year-old boy had his heart surgery postponed, as a surge in COVID-19 patients has contributed to stretching resources thin at Primary Children's Hospital.

For any other sixth-grader, a stretch of 28 days of November would be all about leaf piles and leftover Halloween candy and chilly walks to school and urgent games outside with friends as night falls earlier and earlier.

But for 11-year-old William, it’s another 28 days without friends. Another 28 days of trying to walk around his house without getting tired. Another 28 days with two leaks in his heart.

For a kid who needs surgery and can’t get it, 28 days is an eternity.

William is one of the children whose surgeries have been delayed amid an overload of patients at Primary Children’s Hospital — and his mother says that 28-day delay comes almost 10 months after he developed symptoms of a worsening heart condition.

“All the resources are stretched so thin now because of the kids with COVID,” said William’s mother. She asked not to be named because she fears harassment, with the deep political divisions that have intensified during the pandemic. William also asked for medical privacy and is identified with a pseudonym. The Salt Lake Tribune examined records that confirmed the Murray boy’s surgery schedule.

The surge in patients is driven by a combination of the coronavirus and other ailments, Primary Children’s Hospital officials said as they announced a delay in “non-urgent” surgeries last week. The respiratory illness RSV spiked in late summer, and a number of patients with trauma-related injuries also have been admitted, according to a statement from the hospital.

Intermountain Healthcare announced in September that, due to a swell in coronavirus patients, it was starting to postpone “urgent but not immediately life-threatening” surgeries at 13 of its other Utah hospitals. University of Utah Health has been delaying some surgeries periodically in recent months but hasn’t rescheduled any in the past two weeks, a spokesperson said.

Nearly 250 children were hospitalized at Primary Children’s on Wednesday — well above the normal early-November patient count of 180, and even above the normal late-winter peak of 230.

While COVID-19 is not the only contributor, childhood COVID-19 hospitalizations in September 2021 were more than double what they were in 2020 and remained high throughout October, according to the Utah Department of Health.

But new hospitalizations are not the only factor, William’s mother said. As William waited nearly three months earlier this year for a cardiac MRI, hospital staff told his mother that COVID-19 had created long-term health problems in a number of children.

“They said [they] anticipate there are going to be this many children born with a heart defect every year, and this many who age out of pediatric and move to adult doctors every year,” she said. But, she recalled employees telling her, “we had a lot more than that because of kids who had COVID complications, and we’re overwhelmed.”

[Read more: ‘It’s real’: Utah doctors and nurses talk about treating kids sick and dying from COVID-19]

Primary Children’s hasn’t experienced “broad, significant delays in outpatient cardiac care,” said hospital spokeswoman Jennifer Toomer-Cook. But, she noted, “our resources are strained ... and in some cases it has led to delays.”

The hospital did not provide recent cardiology patient counts to compare to pre-pandemic patient loads, or the percentage of this year’s patients who have been seen for COVID-19 or related complications. Toomer-Cook also said the hospital also did not immediately have the number of surgeries that were delayed last week because of overcrowding.

William’s mother said she doesn’t fault the hospital for any delays her son experienced; health officials have been warning since the beginning of the pandemic that COVID-19 could overwhelm health care providers and squeeze out patients with other illnesses.

In fact, she agreed to speak with The Tribune about her son’s treatment delay only because, she said, an 11-year-old with a heart condition is now facing consequences that might have been avoided with more collective effort to control the spread of COVID-19.

“It feels largely preventable,” she said, “and like the community let us down.”

William was born with a heart defect, his mother said. Surgery as an infant left him with a small leak in one valve and a slight deformity in another. But he recovered well and generally has been able to run and play like a normal kid — and hike beyond what a lot of kids are up for, his mother said.

But in January, the family had gotten barely a mile up a trail near the Great Salt Lake when William asked to sit down.

“Normally, he can go and go and go. But he just stopped and said, ‘I’m so tired,’” his mother recalled.

“Do you feel sick?” she asked.

“I feel like I just can’t do this,” he replied.

William’s pediatrician noted that he had lost a lot of weight from the previous year and told him to visit his cardiologist as soon as possible, his mother said. Although the cardiologist saw William within a couple of weeks, the earliest availability for the MRI he needed was in early June.

“They were like, ‘We’ve just had such a huge increase of kids with COVID complications in all departments, and everything is slowing down,’” William’s mother said.

The cardiologist said the MRI showed the leak in his pulmonary valve had worsened, but not quite enough to require surgery, she said.

That prognosis changed at a follow-up appointment in August. The regurgitation, or backflow, of blood from William’s existing valve leak had risen sharply — and contributed to a new leak in another valve, his mother said. Meanwhile, doctors said they detected dilation of the right side of William’s heart, which, untreated, could lead to an arrhythmia.

“One of the surgeons I spoke with said, ‘He needs to have surgery, probably within the next six months,’” she said. “That was in August.”

But it took another month for the various specialists to convene and finalize the surgery plan, she said. And the earliest opening for the surgery itself was another five weeks after that: Nov. 2.

William already couldn’t attend school because of his medical risks during the pandemic. Now he often doesn’t have enough energy to walk around the block, his mother said. At age 11, his parents bought a wagon for him to ride in so they can still take him on his beloved nature hikes.

But as November approached, finally, he had a chance to start feeling healthy.

On Monday, the evening before the operation date, his parents got a call from the hospital: The surgery was off.

They rescheduled for Nov. 30. Another 28 days to wait. It will have been close to a year since William had to stop hiking by the Great Salt Lake — if the surgery does happen at the end of the month, as planned.

“I don’t think it’s going to,” William’s mother said. “Last year there was such a bad bump after Halloween. It wouldn’t surprise me if the same thing happened this year.”

She said they’ve looked into taking William to Denver for the surgery, “but they’re turning away patients now, too.”

It’s also unlikely insurance would cover a surgery out-of-network now that Primary Children’s has deemed it “non-urgent,” William’s mother said. “They might just tell us to wait until he’s critical,” she said. “We’re in the world’s worst game of chicken right now.”

William is feeling defeated by the delay, she acknowledged.

“He’s just had kind of a frustrated week,” she said. “We’ve been emotionally preparing for this, but he also was anticipating feeling better — and suddenly that was gone.”

But there was a positive development, she said: William got his COVID-19 vaccine as soon as he became eligible this week.

“That was one silver lining,” she said. “Now we’re just hoping he gets through the next month and there’s no further complications. No issues.”