The story below is part of YMyHealth’s COVID-19 Stories from the Field series. We will continue to share personal stories from millennials who are essential workers, caregivers, and those close to them, as long as the pandemic continues.
Sarah Bernstein, MD, MHA, knows what it’s like to be in something for the long haul.
Long before the era of COVID-19, when she was a young and healthy 15-year-old, running high school cross-country and track, she came down with a bad case of infectious mononucleosis. Two weeks later, she thought she had recovered, so she went back to running.
That’s when her heart began to hurt.
It turns out for some reason mono damaged the cells of Bernstein’s heart that control its rhythm causing her to develop supraventricular tachycardia (a fast heart beat with an irregular rhythm) and postural orthostatic hypotension (a decrease in blood pressure and fast heart rate with symptoms like lightheadedness and fatigue) conditions that have affected her life for two decades.
“I think one of the biggest misconceptions by millennials about chronic illness and now COVID-19, is that there is a big gap between the number of people who are at risk for serious disease and those people who realize they are at risk. The reality is, 50% of people have an increased risk,” Bernstein said.
She thinks that if you were to ask those people about their level of risk for severe COVID-19 most would tell you that they are “healthy and don’t have any health conditions” even if they had something like hypertension, asthma, or diabetes. That’s because they just don’t equate those conditions as being a big deal.
“I was once 15 and very active with no underlying health conditions, but then I had a viral infection like COVID-19, and it has affected me every day since. I have to take medications, and I’ve had surgery,” Bernstein said.
“I think my story is going to become less unique as people with COVID-19 get diagnosed with post-viral syndromes, and it’s impossible to know who it’s going to hit and how long it’s going to last.”
Keeping her firsthand experience in mind and tapping into her own staying power for health, has helped her serve the country’s youngest and most vulnerable patients as a neonatologist throughout a pandemic that these babies are born into, and like Bernstein’s bout with mono, could have effects that stay with them for years to come.
A Balancing Act
While neonatologists are used to caring for babies who are critically ill or premature, they aren’t used to dealing with supply chain issues, staffing shortages, restrictions on the number of visitors, barriers to interacting with patients, or lots of moms who are critically ill.
You’ve probably heard about the national blood shortage in media reports. It could make healthcare providers have to choose whether or not a patient gets a blood transfusion who normally would.
However, what you may not know is that the breakdown of the supply chain has affected the availability of devices needed to resuscitate babies and to send labs. And Bernstein worries that the influx of supplies will not improve drastically in the near future or be crippled by future COVID-19 waves.
Also, as more staff contracted COVID-19 or had to isolate, neonatologists have been carrying higher patient loads and working longer hours when they’ve already worked.
“I think all of that combined has made what was already a high-stress environment more difficult,” Bernstein said. “I sense an increase in burnout and fatigue, not just in my colleagues, but for everyone I’m working with because life’s been more stressful.”
The number of visitors allowed in the Neonatal Intensive Care Unit (NICU) was reduced to two—mom and dad. But babies in the NICU are often admitted for five or six months, so it’s been hard to not allow siblings, aunts, uncles, and grandparents, particularly when a baby has died.
“I commend the hospital for balancing the risk of bringing a family member in to support parents who are grieving or going through something terrible with the fact that most patients in our unit are immunocompromised or born very premature, and we have to protect them,” Bernstein said.
Luckily, the University of Utah where Bernstein practices, has done an excellent job of anticipating staff shortages while also balancing COVID-19 risk.
Even though she is used to wearing masks and gowns during procedures, she’s found wearing protective gear full time has led to some depersonalization.
“Trying to maintain empathy with families and communicate that you’re in this with them when you have a physical barrier is more difficult and can translate into feeling like an emotional barrier too,” Bernstein reflected.
It is particularly challenging when counseling moms in pre-term labor (22-28 weeks). In the midst of having a really difficult and intense discussion with the parents understandably crying, you want to comfort them, but you can’t.
“I love my job, and feel so fortunate that I get to do something that I find so much meaning in,” Bernstein said passionately. “That hasn’t changed, but it has been more challenging because of the pandemic.
Especially seeing moms delivering babies while critically ill themselves.
Seeing Yourself in Those You Care For
To some degree we have this innate, unconscious attachment to people who look like us and our friends, Bernstein said. It’s this attachment that’s led to her greatest professional challenge of the pandemic.
“It’s been very hard to see moms who are millennials and my age, who were previously healthy, to be so, so sick, and for me to talk with their families, who are understandably devastated during a time that should be a celebration, has just on top of all the other challenges been really difficult,” Bernstein said.
Some had a major stroke, and it’s hard knowing that this will impact the rest of their lives and their child’s life. “You want a good outcome. That’s why you get into neonatology. It’s hard when you have more of those bad outcomes,” she said.
The risk of complications has also increased with more frequent use of instrumentation—a vacuum or forceps—to extract a baby from its mom because she is too ill to use her pelvic muscles to push. These instruments put pressure on the baby’s head, increasing the risk for head bleeds and hypoxic ischemic encephalopathy—when an infant’s brain does not get enough oxygen, Bernstein said.
After noticing the rise in complications in otherwise healthy, pregnant women, she looked through the CDC’s list of underlying medical conditions that increase the risk of COVID-19 and its severity. She was taken aback to find that more than 50% of people in Utah had one of those conditions.
That along with her personal story, motivated Bernstein to highlight the discrepancy between the language used in reporting who is a risk for COVID-19 and people’s understanding of who actually is at risk. Her @sbernsteinmd, January 2022 tweet went viral, garnering the attention of thousands and the Today Show.
She wanted to show the human beings behind the numbers. When it comes to COVID and risk, she says: “Think about it as if it’s your mom or your child. What would you give for three extra months with them? Six extra months?”
“When we say 85% of people who are hospitalized have an underlying condition, you’re not talking about people who are previously bed bound or who have a shortened life span. You are talking about people who may have risk factors, but should have a normal life expectancy,” Bernstein said.
She finds that the pandemic has made people more aware of a “pretty pervasive underlying ableism that’s present in our country,” including in the language used to talk about deaths and hospitalizations.
“It’s disturbing because my patients, who might even look healthy at two or three months old and should live full lives, are at risk of dying because they have premature lungs or other complications,” Bernstein said. “I think what COVID is stealing from these families–the amount of life and years lost– is something that has been very minimized, and to me, it’s honestly devastating.”
Making Tough Personal Choices
When it comes to taking COVID-19 precautions, the people Bernstein spends time with, whether they have health conditions or not, have similar levels of risk tolerance. The majority of her family and friends, all got vaccinated as soon as they were eligible, use masks, and avoid going to crowded places.
Moving to Utah and starting a new job during the summer of 2021, she was fortunate to become very good friends with a small group of people who she would have dinners with—all whom were cautious about COVID-19 and preventing its spread.
But like most of us, there are people in her life who she loves that do not feel the same way. That’s been really conflicting and morally challenging. While they are adults, and she strongly supports people having autonomy over their own bodies, she feels they are at risk.
So, how does Bernstein navigate family gatherings and those who aren’t as cautious about protecting themselves?
“I’ve had to say, ‘I love you, but I’m not coming’ and that’s really unfortunate for everybody,” Bernstein said. “I have had to miss some holidays, but for me, my parents (who require everyone gathering be vaccinated), and for many of us who are at increased risk of COVID-19 or work with people who are, that’s the decision we’ve made, so we can feel safe and gather.”
What about opportunities to socialize with her peers?
Like with family, she sets boundaries and does not let other people guilt her into doing something she is not comfortable doing—something she suggests that fellow millennials try in navigating social situations.
“My personal approach when I’m not aligned with someone is to say: ‘I’m not saying what you are doing is wrong. I’m saying that it’s not the right choice for me at this point in time,” Bernstein said. “I just don’t feel comfortable going into crowded spaces particularly without people wearing masks, like attending concerts or large parties. I’m sorry. I hope we can do that again in the future.”
An Unforeseen Future
Perhaps that’s because her life experiences allow her to see the road that lies ahead more clearly than others who have never experienced what it can take to get a diagnosis and then live with a chronic medical condition.
“I think that we as a scientific community have not yet begun to see the tremendous burden that long COVID is going to have on millennials in general,” Bernstein said.
COVID and mono are similar in her view in that they both are viruses that can randomly affect multiple parts of the body long term.
One of the most striking things about COVID is people in their 30s and 40s can have strokes in multiple places—something unheard of previously. Since our arteries and veins are everywhere in the body, that means the virus has the potential to affect everything and anything.
“This isn’t fear mongering, it’s just the result of a severe virus that while we think of it as being the lungs, we also know it affects the blood vessels, inflammation, and can trigger autoimmune diseases,” Bernstein said. “People are going to be living with chronic issues and not know what’s causing them. I see that coming and becoming common down the road.”
It makes her feel helpless to have to watch other people going down a similar path that she did, seeing many doctors and taking many medications before they figured out her diagnosis. It was a nightmare to go from being healthy to passing out from exhaustion and not knowing why.
“If you could prevent this by wearing a mask and getting vaccinated, as someone who has been through it, I can say that’s the wiser choice.”