Each night, the surgery team at the Congenital Heart Center at C.S. Mott Children’s Hospital in Ann Arbor looks at “the list:” the names of children, some just months old, who desperately need heart surgery. In normal times, the nationally-ranked center has the capacity to do 18 surgeries a week, making it one of the largest congenital heart programs in the U.S. Now, as hospital systems across the state remain overwhelmed and understaffed, the team at the Congenital Heart Center is only able to do about two.
So, Dr. Jennifer Romano and her team have the brutal task of ranking which kids need care the most.
“We literally rank order them with, who is the top priority?” says Romano. “Who's the most symptomatic? Who's been delayed or postponed multiple times? Everything goes into that list.”
And it means patients like Marcel, a pink-cheeked six-month old born with a heart defect, end up in a “purgatory of waiting” for life-saving surgery, says mom Maggie Frye. Their family knows what it’s like to be collateral damage of a hospital overburdened by COVID-19 surges: the months of delays, rescheduling, and more delays. Thousands of surgeries and medical procedures in Michigan have had to be pushed back. Since December 1, Michigan Medicine (which includes C.S. Mott Children’s Hospital) alone has had to delay more than 300 procedures, according to the health system.
“This is real, and as far as we know, it's not going away,” says Romano, a pediatric heart surgeon. “...And it's impacting little guys like Marcel, who just need surgery.”
“A purgatory of waiting”
Nobody needs any extra anxiety right now, so we’re going to fast-forward with a spoiler: Marcel is home from the hospital. He’s doing well. He’s at that stage where he’s working hard on learning how to laugh, and sometimes when his mom makes silly noises at him, he just gets it.
“He’s been in his normal cheerful mood,” Frye says, speaking over Zoom from her basement in Ann Arbor, where she’s a sociology professor at the University of Michigan. “He still has some normal pains, so we have to be careful about which position we put him in.”
The family has three children: their eldest daughter, Rio, is four, and the twins, Inés and Marcel, are six months old. All three were born with rare heart conditions. Doctors aren’t sure why.
“So far, we’ve done various genetic tests and nothing comes up,” Frye says. “Sometimes it just kind of clusters in families and there’s not a known cause.”
But Marcel’s condition is the most serious. It’s called Tetralogy of Fallot, and it means his blood doesn’t carry enough oxygen to the rest of his body. Sometimes, when he gets upset or agitated, he can have what’s called a “tet spell,” where his oxygen levels drop so rapidly that his skin turns blue.
The good news is, Marcel’s condition is treatable with surgery, ideally done between 4-6 months old. At that point, the baby’s heart is at least a little larger and sturdier than at birth. So Marcel’s surgery was initially scheduled right on time, just after his 4-month birthday in early December.
Almost immediately, it was pushed back.
“They called us back right after scheduling it, to bump it back a week, because there was a more urgent surgery that needed to be scheduled for that slot,” Frye says.
This was right as Michigan was entering a dual-peak surge in COVID-19 cases and hospitalizations: first because of the delta variant, and then omicron. Frye wasn’t too worried. Still, just to be on the safe side, they kept their older daughter home from preschool, to reduce the risk of Marcel getting sick in the meantime. But somehow, he still got the sniffles.
That meant a second delay.
“They can’t operate if there’s any virus in the upper respiratory system,” she says. “So then the next date they were able to give us was the third of January.”
By that point, Marcel was five months old. Frye says they spent the holidays essentially in lockdown. Their older daughter stayed home again. They lined up family members to watch Marcel’s siblings the week of the surgery. And once again, they went through the pre-surgery prep: not feeding Marcel for hours before the scheduled surgery so his stomach would be empty. Bathing him with a special soap to reduce the risk of infection at the surgical site.
Then, the night before Marcel’s surgery, they got a phone call from Dr. Romano with familiar bad news: it wasn’t going to happen.
"...It just seems like two years into the pandemic, the fact that this many people who really need care are not receiving it in a timely manner is really frustrating.”Maggie Frye
“I felt terrible,” Romano says. “They’d been through this, they’d been postponed before because he’d been sick. I didn’t have a scheduler call them – I called them, on a Sunday night, to say ‘I am so sorry.’”
The next available slot was early February. By that point, Marcel would have been six months, almost too old for the ideal surgery window.
“This 11th-hour cancellation really kind of threw us for a loop, and also made me scared for him in a way that I hadn't felt before,” Frye says. “And also just really pissed. I don’t completely understand all of the reasons why elective surgeries are getting canceled at such a high rate, but it just seems like two years into the pandemic, the fact that this many people who really need care are not receiving it in a timely manner is really frustrating.”
This time, pediatric care is feeling the strain
The big limiting factor right now is staffing, Romano says. The omicron surge worsened an already severe health care worker shortage.
“It’s COVID-positive workers who can't come in and help even though they want to,” she says. “It's a COVID-negative worker who can't come in because their kid has COVID or their child care provider has COVID, so they don't have child care. It's so multifactorial, honestly, none of us could have ever fathomed where we are today at this time in 2020.”
Between staff illnesses, pandemic burnout, and increasingly competitive wages for travel nurses, health care shortages are the worst they’ve been in Michigan since the pandemic began. And unlike earlier surges, children’s hospitals aren’t immune.
“We certainly never anticipated … that we were all of a sudden going to be faced with this acute nursing shortage, where our beds are shut down, we can only staff safely so many patients. And all of a sudden, we're making so many decisions that are impacting pediatric patients that we really didn't have to face at the beginning of the pandemic,” Romano says.
In pediatric heart surgery, there’s no way to predict exactly when a child with an urgent heart problem will be born, or when a baby in the neonatal ICU will go into cardiac arrest. And every child will need one-on-one care from an ICU nurse for at least 24-48 hours post-operation. So when a surgery slot does open up, they have to factor in not only which kid is sickest, but which kid can get there in time.
“We have patients who come from all over the country,” Romano says. “So during the same time frame [as Marcel’s surgery] I had a patient who was having declining [oxygen] saturations in South Dakota that we were balancing, trying to transport her in winter weather.”
But a winter storm made it impossible for the small medical transport aircraft to take off. The patient’s parents started driving, but that meant there was suddenly a new window open for another patient.
“Because it's one more child whose heart has been fixed,” Romano says. “One less child who's waiting.”
A turn for the worse – and some good news
That same night they learned Marcel’s surgery was going to be delayed a third time, Frye was giving Marcel a bath, when his oxygen levels dropped suddenly and his skin started turning blue. They called the hospital, and were told he needed immediate care.
“We brought him to the hospital at like 11 p.m.,” Frye says.
Suddenly, Marcel's surgery had gone from one that could wait, to one that needed to happen as soon as possible. Frye says on the one hand, this was terrifying.
“But also I was like, ‘Gosh we’re going to get this inside path to a sooner surgery.’ And that felt somehow like we were getting out of this purgatory of endless waiting.”
Marcel was being moved up the surgery shortlist, doctors told them. But there were still kids ahead of him, so the wait would likely be another week.
Then, Dr. Romano got an unexpected call from the scheduling team. “They said, ‘You know what? We think we could have nursing to staff [Marcel’s] case after 7 p.m.. Are you willing to start this open heart surgery late?’”
Nobody hesitated. Everyone from the anesthesiologists, the scrub nurses, and the nurse technicians agreed they’d stay as long as it took.
“All those people rallied and said, ‘If we can get it taken care of, we're all willing to do it,’” Romano says. By 11 p.m., Marcel was out of surgery. His recovery was slow, but steady. The nurses gave him a stuffed toy sloth to keep him company in the ICU.
"We are so grateful that they fit us in the way that they did,” Frye says. “The fact that his heart is repaired is just a really big relief."
Marcel is home now, recovering and doing well. There will be physical therapy, and follow-up appointments, and eventually, more surgery in the years to come. But Romano says her team is hopeful that if COVID cases keep dropping, hospitals will get some relief. Michigan Medicine says it is “currently working on plans to go back to normal capacity as quickly as possible.”
“Things are looking a little bit better,” Romano says. “We're hoping to have a little bit more flexibility in doing cases, but sadly we've learned all too well that this isn't over. We're not in the clear.”
The Detroit Free Press, Bridge Magazine and Michigan Radio are teaming up to report on Michigan hospitals during the coronavirus pandemic. We will be sharing accounts of the challenges doctors, nurses and other hospital personnel face as they work to treat patients and save lives.
If you work in a Michigan hospital, we would love to hear from you. You can contact reporters Robin Erb (rerb@bridgemi.com) at Bridge, Kristen Jordan Shamus (kshamus@freepress.com) at the Free Press and Kate Wells (katwells@umich.edu) at Michigan Radio.
