When Heather Segal and her wife got married in 2019, they knew they wanted to have kids. Segal had given birth to twins a decade prior, so she expected that conceiving again would be easy. “I was kinda naïve about it,” she says. “I thought, ‘I have twins, I’m super fertile, it’s gonna be no problem.’”
But that decade had made a big difference in Segal’s body. She was diagnosed with polycystic ovary syndrome (PCOS), a hormone disorder that often leads to infertility. She and her wife, who live in Massachusetts, were in the midst of a battery of tests to understand the baseline of her infertility and the medications that would be necessary for her to conceive when the pandemic hit.
Following guidance from the American Society of Reproductive Medicine (ASRM), in vitro fertilization (IVF) and other fertility clinics across the country shut down starting in March 2020. Some stayed closed for as long as 12 weeks, leaving treatment plans in disarray.
An IVF cycle begins with blood, semen, and genetic testing; ultrasounds; and multiple expensive and very precise drugs that stimulate the ovaries to produce eggs. Next is a procedure to retrieve those eggs, which are fertilized with sperm from a partner or donor and grown in a petri dish for a few days. Often, those embryos are tested for viability before the final step—implanting viable embryos in the womb and hoping they thrive. The whole process takes two to three months. Preliminary data from the CDC indicate that about 330,000 Assisted Reproductive Technology cycles (of which IVF is by far the most popular) were completed in the U.S. in 2019. At that rate, a one- to three-month shutdown in 2020 could mean 100,000 or more cycles were disrupted or canceled during just the first months of the pandemic.
In a survey compiled later in 2020, 85% of respondents whose cycles were cancelled found the experience “moderately to extremely upsetting,” with almost a quarter rating it equivalent to the loss of a child. IVF is already a complicated, emotionally fraught, and expensive undertaking and was made even more so by the arrival of COVID-19—a microcosm of modern fertility struggles. Even once clinics began reopening, COVID-era infertility presented a new set of painful challenges.
“The waiting room has always been a lonely place, and it’s 10 times lonelier now,” Segal says, adding, “It’s one of those things that it’s not easy in normal times, and then you throw a pandemic in there, and it’s just so much harder.”
‘Huge loss and grief’
At the start of the pandemic, “hospitals were overwhelmed with patients, really sick patients. ICU beds were at risk for running out,” remembers reproductive endocrinologist Paula Amato. With those factors, plus the shortage of personal protective equipment (PPE) like masks in mind, ASRM’s COVID-19 task force recommended a national shutdown of clinics, both to mitigate disease spread and save valuable PPE for health care workers in ERs and ICUs. Only patients who had already taken their first doses of hormone medication to prepare their bodies for egg retrieval were allowed to complete that process, after which those eggs were frozen.
Amato’s clinic at Oregon Health & Science University in Portland performs about 800 cycles per year and was shut down for some two months. After wrapping up a handful of patients already in cycle, a process that takes about two weeks, they stopped work entirely. Amato notes that the recommendations were not implemented equally everywhere in the country. In Cincinnati, for example, every fertility center in the city was shut down for even longer, some as long as 12 weeks, says Michael Thomas, chief of the Reproductive Endocrinology and Infertility Division at the University of Cincinnati College of Medicine.
The cancellations—of new hormone cycles, exploratory surgeries, testing batteries, and embryo transfers—were “hugely disruptive” as Amato says, but they were just the beginning of COVID-19’s IVF effects. Transgender patients trying to get pregnant need to go off gender-afirming hormone therapy before egg harvesting can go forward; Thomas saw patients stuck in limbo unable to move forward or go back on those medications during the shutdown. And with non-essential travel restricted, many of the patients at Amato’s clinic who come from out of state or another country were unable to come for treatment. She even heard stories about gestational surrogates stranded abroad, caring for babies after they were born.
Reverend Stacey Edwards-Dunn, founder of the organization Fertility for Colored Girls, says many members of her group going through IVF during this time were distraught. “Some people who were preparing to start cycles couldn’t even start,” she says. Even though technically they hadn’t taken the first dose, she points out, it felt like they’d already started. Many had the medicine in hand and had been undergoing tests for weeks or months. “There’s an emotional attachment to that, not being able to go ahead with something you prayed for, worked up the courage for, prepared for,” she says.
Edwards-Dunn was not surprised to hear the results of the survey comparing cancelled cycles to child loss. Infertility already represents the loss of a dream—naturally conceiving a child—for many people, she points out. “Every step, from meeting with the doctor to an ultrasound, the medications you take, all of it is so interrelated that at any point there is huge loss and grief if something is cut off.”
A ticking clock
The late spring and early summer shutdown period was one of great fear and uncertainty in fertility circles—and general trepidation about entering health care facilities. “All you were hearing about were things going on in New York, the freezer trucks they’re putting these bodies in,” Thomas says. “We just didn’t want that for our patients.” Only one group of people had access to IVF during this time: “oncofertility” patients who needed to have their eggs harvested before chemotherapy. And those procedures were particularly fraught, he says, because of the special circumstances required to make them happen. Anesthesiologists, for example, were broadly “in shutdown mode,” he says. “We had to convince them to come along with us on this journey.”
Even as restrictions eased in midsummer, the atmosphere in IVF clinics remained uneasy, with extensive PPE protocols and restrictive guest policies. Emerging data indicated that pregnancy was a significant risk factor for severe COVID-19 as well as related obstetric complications; Thomas’ clinic saw more than one pregnant patient die of COVID-19. That increased risk is in part because pregnancy is an immunosuppressed state, and potentially also because of the way an expanded uterus can push up on a pregnant person’s diaphragm, affecting breathing. (Pregnant people are also at higher risk for severe cases of the flu, for example.)
“The first ultrasound, the first heartbeat, these are moments you can’t get back,” says Amy Stiner, a nurse in Massachusetts who, like Segal, was seeking IVF treatment during the pandemic. “They’re trying to do things like using Zoom, but it’s not the same as being in the room with someone.”
Because of the heightened risks, many clinics, including Amato’s, counseled patients that they might consider freezing their eggs or embryos—preserving their ‘age’ at harvest—and waiting on subsequent steps like embryo transfer procedures until the pandemic had calmed. With a new freezing method known as vitrification, which eliminates previous issues with ice crystals, eggs and embryos can survive almost infinitely when frozen. But most people Amato talked with didn’t feel like they could wait.
“The bottom line is there’s a ticking time clock when it comes to fertility needs, and any interruption is significant—no matter how long or how short."
“Success decreases with increasing age,” she notes. During the first weeks of the pandemic, she and her colleagues didn’t know how long their clinic would be closed. Many of her patients stressed about getting older, especially those aging out of fertility.
“Every month makes a difference as soon as you hit 41,” says Stiner, who is 47. “All those people in their 40s were watching the clock tick and not sure if they would have to do another cycle to get a viable egg. That’s a huge gap if you’re putting off three months and continuing to lose egg viability during that time. It’s very tragic for a lot of families.” Plus, she points out, many older IVF patients rely on genetic testing to determine the viability of their embryos, and clinic shutdowns prevented some of them from making better informed decisions about how to move ahead with treatment.
Stiner was among those older patients, racing against time during the pandemic to do an “embryo adoption” through friends. It was a process that normally would have taken three months but took nine instead with increased time on paperwork—and then the embryo transfer failed. Now, Stiner is planning to try with donor eggs, though she used the bulk of the money she had allotted for that to support friends and family who were struggling financially during the pandemic. Because of her age, she says, “I basically have 24 months to be successful or I have to find a highly specialized clinic, probably out of state.”
Now, she’s in the midst of redoing the battery of tests required by her insurance company every six months to a year—STD testing, mammograms, hormone testing, EKG—which lapsed during the shutdown and the fallow period after, and some of which have to be done at specific times of a menstrual cycle. Even as things open up, “You don’t just start back in,” she says, adding, “The bottom line is there’s a ticking time clock when it comes to fertility needs, and any interruption is significant—no matter how long or how short.”
Seasons of uncertainty
Meanwhile, Stiner and Segal both turned to Facebook’s many active infertility support groups, which have been filled with anguished posters grappling with both cancelled IVF cycles and dire financial straits. Only a few states offer public insurance that covers IVF, meaning that many patients are reliant on private insurance through an employer—adding yet another layer of difficulty for those who lost their jobs during the pandemic.
“Some people haven’t been able to pursue any more IVF cycles because they can’t afford the meds,” Stiner says. Families found themselves having to make compromises and hard choices, asking questions like, “I have embryos in the freezer, should I be pursuing those?” she says. “What if I get COVID?” And some patients in those groups did get COVID-19 during their treatment and had to cancel their cycles and wait until they were disease free.
“You’re talking about $20,000 worth of medication that insurance companies don’t replace,” Stiner says. Plus, she adds, many insurance policies that cover IVF include a lifetime cap on benefits. “There are people that probably blew their entire lifetime cap when everything initially hit—they went through all of it, used their meds that month. That’s one of the reasons why they had to move forward with those retrievals.”
The question becomes about “who’s deserving of being able to create a family, and what they’re supposed to do to prove that to you.”
Meanwhile, Segal spent the pandemic year paying out of pocket for six rounds of intrauterine insemination (IUI), also at a cost of some $20,000. Because she’s in a same-sex marriage, she wasn’t able to prove to her insurance company that she’d been trying unsuccessfully to conceive for the required amount of time to earn IVF coverage. (She’s currently appealing that decision.)
The pandemic evoked philosophical questions, as well. When Segal’s clinic reopened, its doctors gave out a sheaf of forms whose contents boiled down to: We don’t have very much information about pregnancy, COVID-19, and fetuses, so you need to know what you’re getting yourself into. “Is this what’s right in this moment? Like, do we stop?” she remembers asking herself, a question she never would have considered before. Like many others, she thought of the time already lost and ultimately decided to charge forward.
As the pandemic continued, Joia Crear-Perry, an OB-GYN and the founder of the National Birth Equity Collaborative, saw heightened stress add to the difficulties already faced by the people she serves. “The last 18 months have been a reflection of what’s always happened in my community of Black birthing people, which is that we don’t even get to talk about infertility, much less receive services for it,” Crear-Perry says. When Americans picture who “should” be having families “they generally imagine a white middle- or upper-income married couple,” she says—a narrative that has only been strengthened and emphasized during the pandemic. And since many Black and brown people don’t work at jobs that provide insurance, the question becomes about “who’s deserving of being able to create a family, and what they’re supposed to do to prove that to you.”
Then, at the end of May, as some fertility clinics were reopening, the country exploded with protests after police in Minneapolis and Louisville killed George Floyd and Breonna Taylor. For Edwards-Dunn and the members of Fertility for Colored Girls, it was an exceptionally painful time. Being a Black person in this country was hard already, Edwards-Dunn says. In her community, people were asking each other, “What does this mean to have a child in the midst of a pandemic and in the midst of so much racial unrest?” she says. “What does that mean for me and the future of my child, the future of my family?”
With these kinds of questions in mind, Crear-Perry says “plenty of people paused all kinds of fertility treatment that I know.” Even before the pandemic, communities of color worried “about what our role is in harming our children,” she adds, “knowingly bringing children into this world when we know they’re going to have to fight to be seen as fully human when they get here.”
Threading the vaccine needle
As the vaccine rollout has spread across the country, IVF clinics have hosted many discussions about potential risks. “There’s lots of misinformation about vaccines and infertility, vaccines causing fevers that could affect implantation,” Amato says. While there remains controversy about whether fevers can cause birth defects, that effect has never been demonstrated with hard data, she emphasizes, nor does any evidence indicate the COVID-19 vaccines cause infertility. And there’s no correlation between fever and miscarriage.
Instead, the main concern at IVF clinics was that a vaccinated patient’s fever side effect could be mistaken for COVID-19 itself, leading to the cancellation of a procedure and the disappointment and financial consequences that come with. ASRM recommends timing vaccination so it doesn’t fall within three days of any procedure, whether it be egg retrieval, exploratory surgery, or embryo transfer, guidance that many clinics shared with their patients.
Segal, who received a similar message, got her first shot between cycles, but her second shot fell right in the middle of a cycle. In fact, she got her second vaccine dose and her first test to check for possible pregnancy within 24 hours. She felt a little panicky but decided to go through with the vaccination and take Tylenol if she got a fever. Ultimately, she experienced no side effects.
The lingering questions around the vaccine “make it more of a mystery, and therefore it’s a barrier,” Crear-Perry says. “Especially for communities of color who are like ‘I’m not sure about this vaccine stuff.’” To counteract that sentiment, Edwards-Dunn arranged for a panel of Black doctors to come talk to the members of Fertility for Colored Girls, to address their questions and concerns around pregnancy and the vaccine. It was important, she says, to show members doctors who looked like them and who had decided to get vaccinated, in order to “equip them with the armor to make the right decision.”
Even with all the uncertainty, the added complications, and the financial burden, IVF is currently experiencing a surge in popularity. At Amato’s clinic, patient numbers are up 20% over pre-pandemic levels, a pattern she says is consistent with what her colleagues are seeing across the country and which she attributes to the pandemic crystallizing the urgency of following long-held dreams. “It either went one way or the other,” Crear-Perry says. As it turns out, some people’s answer to summer 2020’s tough questions was, “I’m going to figure out some money to make this happen.”
‘Like plastic surgery’
For Crear-Perry, the struggles that people going through IVF have faced during the pandemic say a lot about how we think about fertility as a society. “It’s like plastic surgery, almost,” she says. “It’s ‘nice to have’ and only for people who have the money to pay extra—versus seeing it as a fundamental part of people’s well being.”
She wonders what would happen if we thought about creating a family as a human right, rather than a luxury good. “You can see why we don’t have infrastructure to continue services during a pandemic if you think of it as ‘nice to have.’”
Meanwhile, Edwards-Dunn and the members of Fertility for Colored Girls tried to find meaning in the pause the pandemic engendered. “We live in a microwave society; we want stuff when we want it,” she says. Part of her work, then, became helping her community “not to curse the pause, to celebrate in it,” she adds, the same way that we see winter as an important season to allow new growth. “Our ancestors endured much more than we have endured in 2020-2021,” she reminds them. “If they can do it, we can do it.”
Segal says pursuing IVF during the pandemic has made her “a little salty.” IVF and infertility treatments are categorized as “elective” procedures, but “this is not an elective thing,” she says. “We’re not just doing it for fun, it’s medically necessary.” She also struggled to face down uncertainty and fear during a difficult year. “People think, ‘Oh yay, IVF, science, you're going to have a baby!’” she says. “No, you don’t know. You could be forking out all this money for nothing. There’s no way of knowing what’s going to happen at the end.”
For now, though, things are looking promising. At the end of Segal’s final round of IUI, she tested positive—she is, at long last, pregnant. “We don’t know what’s going to happen,” she says, “but I’m cautiously hopeful that this is it.”