Long COVID is snuffing out some patients' dreams of having children, sharpening the pain of loss, grief and medical neglect.
When Melanie Broadley and her husband started going out in 2019, like many couples their age they decided to put "starting a family" on the shelf for a few years so they could focus on their careers. A postdoctoral researcher who studies diabetes and psychology, Broadley was 28 and in good health — she had plenty of time, she reasoned. Then, in 2022, she caught SARS-CoV-2 and developed long COVID, blowing up her life as she knew it and, for now at least, her hopes of having a baby.
"I became totally disabled by long COVID," says Broadley, 34, who lives at her parents' house in Brisbane. On a good day she struggles with debilitating fatigue that worsens after any kind of physical or mental activity, an autonomic nervous system disorder called postural orthostatic tachycardia syndrome (POTS), which causes her heart rate to spike when she stands up, cognitive dysfunction that means she can't read or write for more than 10 minutes at a time, and an immune disorder, called mast cell activation syndrome, that triggers allergic reactions. Even though she's been doing everything she can to recover, she's still too unwell to cope with a potential pregnancy.
And it hurts. "I wasn't ever going to be a young mum but for at least the last three or four years it's definitely been something I've wanted," Broadley says. "When I'm watching a TV show about pregnancy or birth or miscarriage I become emotionally affected — it feels like my drive to have a child is almost biological, it's something I need to do … So I really worry that if I don't have a kid, it's something I will regret and feel pain about for the rest of my life."
For millions of people with long COVID around the world, the pandemic is not just a minor nuisance or a bad memory but a daily waking nightmare. The disabling chronic illness is taking a devastating toll on patients' health, stopping many from working, exercising, socialising and living independently. But long COVID is also snuffing out some patients' dreams of having children, and complicating pregnancy and parenthood for those who choose to conceive despite their symptoms and doubts about when or if they will recover.
Partly it's because they are simply too sick to have a baby; some can barely care for themselves, let alone a tiny human. Others worry that pregnancy could worsen their condition and are hoping they'll get better in time to consider conceiving while they still can.
But for many, getting good advice about fertility and reproductive health is a stressful, confusing experience that is frequently complicated by a lack of research — and lack of awareness and education among medical practitioners. And it's creating a huge well of uncertainty and sadness, deepening feelings of loss and grief that patients and their families have been nursing privately for years.
"So many patients talk about how they've lost the ability to do the things that make them them … or to contribute to society in ways that feel meaningful, to create," says Beth Pollack, a research scientist at the Massachusetts Institute of Technology who studies long COVID, myalgic encephalomyelitis (ME/CFS) and other infection-associated chronic illnesses. "And for some patients, having a child is another thing that they mourn. But until we sufficiently … fund comprehensive research that looks at all of the different ways these illnesses impact the body, unfortunately this significant loss will continue."
Melanie Broadley recently saw a fertility specialist to talk about her options. Perhaps egg freezing was a possibility — if she could "stop the clock", she thought, she could take some pressure off her long COVID recovery. But her doctor's advice — that she was not well enough to go through several cycles of hormone injections and egg retrieval — took her by surprise.
"He said, 'Let's just try to improve your overall health so you can try to fall pregnant naturally'," she says the specialist told her. "I felt slightly annoyed by that. All I've been doing for the last two-and-a-half years is trying to improve my health. The fact is, with long COVID you can be doing everything 'right' and still be completely disabled."
She left the appointment feeling numb. "I just felt like I had no good options. I'm aging, and everyone's telling me that's a problem, but I'm sick, and everyone's telling me that's a problem, and I can't control either of those things," Broadley says. "I'm feeling like my only hope to have a child is spontaneous recovery from long COVID but I don't have a lot of faith in that happening."
Even though she has seen some improvement in her symptoms lately, she's still stuck in bed for 20 hours a day, still taking 20 pills a day. "So I'm feeling quite deflated, and I'm starting to try to imagine my life without children."
Though prevalence estimates vary, some researchers have calculated that at least 65 million people globally are suffering from long COVID, with an Australian study this year finding one in five people were still experiencing persistent symptoms like fatigue, cognitive dysfunction and sleep problems three months after testing positive to the virus.
As with other infection-associated chronic illnesses, women — especially pre-menopausal women — are more likely to have long COVID than men, suggesting sex hormones and female immune responses may play a role. Other risk factors include infection severity, pre-existing health problems, genetics, the protective role of vaccination and reinfection.
There is no cure and no approved treatments for long COVID, which scientists believe has several possible drivers: viral RNA or protein that lingers in certain tissues, inflammation and immune dysregulation, autoimmunity, blood clotting abnormalities, reactivation of latent viruses, organ damage and disrupted brain stem signalling. Instead, while they wait for the results of clinical trials, patients can only manage their symptoms with medication, supplements, rehabilitation therapies and pacing their activities — often a frustrating, expensive process of trial and error.
As for how long COVID affects reproductive health, a literature review by Beth Pollack and her colleagues last year found there was a severe lack of research. Emerging evidence suggests long COVID can affect women's menstrual cycles, ovarian health and fertility, while studies of related and overlapping conditions like ME/CFS, POTS and connective tissue disorders show female patients experience higher rates of menstrual cycle changes, ovarian dysfunction, uterine fibroids and other issues.
SARS-CoV-2 may also affect male fertility, with one small study finding men who were infected with the virus had temporarily lower sperm numbers and concentration and others highlighting the potential risk of erectile dysfunction.
There's also scant research on pregnancy and long COVID, ME/CFS and POTS, which can make family planning even harder for patients — or at least those who are in a position to consider having a baby. What if pregnancy reduces your already low baseline — not an unreasonable question given up to 10 per cent of patients report that pregnancy triggered their ME/CFS or POTS. Could your illness affect your child's health? Will you fully recover from the stress and strain of labour? What about caring for a newborn, breastfeeding, sleep deprivation?
In some studies roughly equal numbers of ME/CFS patients reported that their symptoms improved, stayed the same or got worse during pregnancy, with no clear reasons as to why. But the overall lack of data means there are no evidence-based guidelines, leaving patients, their partners and healthcare providers unable to make informed decisions.
"Reproductive health issues are a common and very impactful part of these illnesses," Pollack says. For instance, many women report a significant worsening of their long COVID symptoms in the days before their period, and one small study found more than a third of female ME/CFS patients had endometriosis, which can affect fertility.
"It is imperative that we study reproductive health, sex hormone fluctuations, menstrual cycles, reproductive phases and pregnancy within infection-associated chronic illnesses," Pollack says. "There are researchers in the field who very much want to study this and have submitted grant applications … but it often comes down to who gets funding, what research is funded."
In the interim, patients and their doctors are muddling through as best they can. "The question of 'what does long COVID mean for family planning?' has started coming through, especially from women in their 20s, 30s and 40s," says Naomi Whyler, a general medicine and infectious diseases physician at Clinic Nineteen, a long COVID clinic in Australia.
She generally talks to patients who are considering having a baby about managing POTS, which can worsen during pregnancy, avoiding crashes with pacing and sleep hygiene, and coming off contraindicated medications well in advance of conceiving. "It can be really hard, especially for first-timers who haven't been through a pregnancy before, to understand what they should expect from pregnancy and then relate that to long COVID," Whyler says.
But people with long COVID aren't just stumbling around in the dark with pregnancy. Some patients are running into trouble with common fertility procedures — and the medical practitioners who provide them.
For as long as she can remember, Amanda, a white-collar professional who lives in Sydney, has wanted to be a mother. "Every big decision I've made has been about what's going to be best for having kids in the future," she says — which neighbourhoods she moved to, the jobs she applied for, how she'd use her annual leave allowance. "It's always been in the back of my mind that if I don't have a partner by age 34, then I'm just going to go ahead and have a child on my own."
Amanda was diagnosed with long COVID, POTS, mast cell activation syndrome and Ehlers-Danlos syndrome — a connective tissue disorder — after she caught the virus in 2022, when she was 32. By the end of the year she'd deteriorated so much that she made an appointment with a fertility specialist, hoping to start the process of conceiving with donor sperm before she got any worse.
"I was quite concerned about how pregnancy might affect my health and whether I'd be well enough to look after a baby, especially as a single mother," says Amanda, a pseudonym to protect her privacy. "Ultimately I decided it wouldn't be feasible — by that stage I was housebound so things weren't looking promising, at least for the foreseeable future."
Instead, Amanda decided to freeze her eggs — maybe she'd recover enough to use them down the line. She fully expected that the hormone injections would have side effects but they flipped her long COVID symptoms into "a different stratosphere", she says.
The retrieval procedure was another challenge. Her medical team weren't familiar with Ehlers-Danlos syndrome, which makes her joints prone to dislocation, nor were they aware that anaesthesia can cause complications in people with POTS. She put her requests for extra care in writing and went into surgery feeling optimistic. But she woke up in a chair, her head lolled to one side and her shoulder and several ribs partially dislocated, feeling cold, weak and dizzy. "I'm still in a neck brace, 24/7, all these months later."
At least the surgery was a success; 16 eggs were collected, which was a huge relief. "But my health definitely took a big knock during that procedure and I've deteriorated quite a lot since then — I've been bed bound since May," Amanda says.
Now 35, she's in a kind of limbo, wedged between the uncertainty of whether she'll recover from long COVID and the "ticking clock" of her fertility. "Hopefully there will be more research and eventually better treatments for long COVID and I just hope it will be at a time when it's still viable for me to have a child," she says. "But now I'm just hoping to recover enough that I can meet someone who maybe already has children. That feels like a more realistic goal."
Laura Allen is familiar with stories like these — of people with long COVID struggling to find medical practitioners who are educated about their illness and willing to help. Patients in their 30s sometimes reach out for advice on conception and pregnancy and ask "questions we can't answer", says Allen, telehealth manager at Emerge Australia, a support and advocacy organisation for people with ME/CFS and long COVID. But there are few places to refer them to; she isn't aware of any "well informed" obstetric and gynaecology care in Australia. "It's usually the person who lives with the illness who's educating the doctors," she says.
It doesn't have to be this way. For decades before long COVID became a serious global health issue people with ME/CFS suffered from a lack of research into their illness and a lack of awareness and education among clinicians — Emerge Australia has described it as "systemic neglect", a disability access issue.
Governments need to take the problem more seriously, Allen says: they need to allocate more funding for clinical guidelines and, crucially, research into effective treatments so that patients can claw back some quality of life, enough energy and support to study or work or raise a family.
"I think everyone has the right to have a child," she says. "This is impacting people at age 35 but we've got children coming through who are really sick too. We're looking at a generation who are going to grow up disabled who will eventually hit that age where, potentially, they've lost the right to have kids because … they've never been given the right research, the right treatments, the right management."
There's lots of research starting to happen overseas, Allen adds: "Why isn't that happening in Australia? We aren't a third-world country. We have money. We have capacity. It should be put into health."
For Beth Pollack, the long COVID "knowledge gap" is reflective of the research gap — it always takes a while for research to filter through to medical front lines. "But I think it's very important to do [medical education] while we wait for more answers, because there's a lot we do know," she says.
For instance, clinicians need to know how to diagnose long COVID and ME/CFS in the first place, she says, how to help patients manage their symptoms and, crucially, to screen for other conditions that commonly co-occur — especially reproductive health conditions. "It's important to screen so we can try to reduce diagnostic delays," Pollack says. "For decades patients have seen specialist after specialist and collected new diagnoses one by one — almost like Pokemon — as they continue to get sicker and sicker."
What to do with all this suffering, this grief? Because the mental health consequences of chronic illness — of prolonged sickness, medical neglect, feelings of hopelessness — are serious.
Australia's parliamentary inquiry into long COVID heard from dozens of patients, many of them parents, who were deeply frustrated that they were unable to live the life they wanted. "I am 36 and have two small children who I am barely able to parent any longer," said Angela O'Connor, a neuroscientist who couldn't work because of long COVID. "I feel like a crushed shell of a human being who will only become more of a burden to her family and the health system as I age."
Father of two Daniel Moore's grief strikes in profound and quiet ways. "My biggest grief from ME is not being able to be the dad I want to be," Moore, 43, wrote on Twitter in 2022. A former social worker who lives in north-east England, Moore has struggled with unrelenting exhaustion, post-exertional malaise and cognitive dysfunction since he developed ME/CFS in 2018, two decades after he recovered from a seven-year bout of the illness as a teenager.
His symptoms mean he must "micromanage" his energy and limit his activities; he misses going for walks and playing video games with his children and is constantly trying to find ways to relate to them that won't make him worse. "To lose that ability to go on adventures with them, that was the biggest thing," he says. "All of a sudden my world got smaller, but their world got smaller as well."
Sometimes Facebook surfaces old photos of him and his family out and about in the world, before he got sick, catching him off guard. "It's quite painful, because I've had seven years out of my kids' life where I've not been able to do those things, and that also impacts my wife, because we've not been able to do things as a family together," says Moore, who co-hosts a podcast about living and coping with ME/CFS.
But this grief, he adds — and the myriad ways long COVID and ME/CFS are splintering patients' lives — too often goes unacknowledged in the broader community. "There's so much focus on the medical side of things, the lack of treatment … but I don't think there's a lot of conversation about the social side, the relational side — how we live our lives, basically, and people seeing the impact of that."
Or the strategies patients are using to get by. Hayley Grant only realised that she might want children after she developed long COVID in 2022. A former primary school teacher who lives in Canberra, Grant, 33, knows she's not well enough right now — managing her heart issues and other symptoms is her priority. It's a major reason she isn't allowing her desire to grow. "I would love a family of my own one day but I don't want to hold onto that idea too tightly as there are a lot of 'ifs' and 'buts' in regards to my health and recovery," she says. "I don't want to have to grieve another thing that long COVID has taken."
But this is not just a story of loss and despair. For all the lives up-ended by long COVID and ME/CFS, there are also glimmers of hope — of patients who have the means deciding that they're more comfortable taking a risk than giving up on their dreams. Some have been able to have children only because they have good support from friends, family and doctors who go the extra mile for them. That's not to say it's an easy ride.
In the first few months after she developed long COVID in March 2020, Ashleigh Batchelor had serious doubts she was going to survive, let alone that she'd be able to conceive and give birth to a second child.
Then 33, Batchelor, who lives in Scotland, struggled with crushing fatigue, POTS, nerve pain that felt like electricity running through her body, breathlessness, muscle tremors and eyesight changes. Unable to work, she lost her job training healthcare workers how to use surgical devices, her car, her health insurance, her fitness, her social life and her sense of self. But she was determined to have another baby, to give her young daughter a sibling.
"I think I just got really stubborn," Batchelor, now 37, says. "I was like, long COVID has taken too much, you're not taking this — I will do this." She knew she was rolling the dice, in a way; she was aware her symptoms might improve or get worse with pregnancy. But her GP was supportive of her plans and her family promised to rally for her if she and her husband couldn't cope. "Also, being a mum has always been written into my identity," she says. "I always just knew I wanted a family."
Things did get rough. Her pregnancy followed a similar trajectory to her first but all her symptoms were "amplified" and at times her pain and fatigue were overwhelming. And although she received excellent care from some healthcare workers, there were also stressful interactions with others: the obstetrician who tried to derail her plan to have an elective c-section, the midwife who made "dismissive" and "belittling" remarks about long COVID and Batchelor's concerns for her unborn baby's health.
But finally, in August 2022, her son arrived — a little miracle. On Instagram she posted a photo of him on her chest, moments after he was delivered, with a triumphant caption: "UP YOURS LONG COVID."
Along the way Batchelor created a Facebook page to help other women with long COVID navigate pregnancy and ask questions that often get lost in mainstream patient communities. "Because there are no textbook answers, and doctors don't always have the answers, the only option we have at the moment is to hear from people with lived experience who are happy to share," she says.
It would make a big difference, she adds, if long COVID advocacy organisations included basic information about pregnancy in their educational resources: "Even if it's just case studies, ultimately with the line, 'It's a gamble — you just have to weigh up whether that gamble is right for you'."
Still today Batchelor struggles with her long COVID symptoms — a weight she says she's better able to carry because she has the "patience and support" of her husband, Graham, who reassures her constantly that they're a team. She can do more than she could when she first got sick but her life is much smaller, much less active.
Long COVID also affects her parenting. She can't just walk her kids to the park, for instance, because it drains her energy. "I'm actually even reluctant to take them to the park, or to soft plays, because there's lots of running around and they might fall off this or that," she says. "Even just the sensory overload of soft plays with kids screaming... it's a lot."
But she has no regrets. "If anything, my kids have been my purpose, they've been the reason I keep going," she says. "Not to get too deep, but there have been points during long COVID where I've felt suicidal and … you absolutely do not give that even a moment's thought because you have these two amazing children."
Those nine months carrying her son, she adds, are her proudest achievement. "Screw sporting accomplishments, degrees, education, jobs, money earned, climbs to the top of Kilimanjaro — none of that. It's getting through pregnancy with long COVID. It was the most difficult and most rewarding thing I've ever done."
Credits
Words: Hayley Gleeson
Illustrations: Gabrielle Flood
