In the first in a series of personal perspectives, the John Snow Project talks to Megan*, a nurse practitioner, whose daughter Chloe* developed Long COVID after SARS-CoV-2 infection.

March 2020 should have been a happy time. Chloe was about to celebrate her first birthday, and her mother, Megan, a nurse practitioner at the local primary care office, and father, David*, a project manager for a large company, were looking forward to marking their daughter’s first year. Chloe had thrived in her first 12 months, and Megan had enjoyed taking her to musical story time at the local library and to play with friends. She was a typical infant who enjoyed the park, seeing friends, going out for meals, and generally exploring the world.

Like many people all over the world, the family’s lives were turned upside down by the pandemic. Chloe’s birthday party was canceled, and as a nurse practitioner working in primary care, Megan was thrust onto the COVID-19 front line.

“I was taking all the necessary precautions as I was terrified of bringing the virus home.  I was wearing all the proper PPE (personal protective equipment) at work, coming home, and getting undressed in the garage, throwing my scrubs directly in the wash, running upstairs straight into the shower, leaving my work stuff in the car.”

Megan’s caution worked, and despite being regularly exposed to COVID-19 patients, her use of PPE meant she remained free of infection, as did her family.

Things changed around Thanksgiving 2020.

“Covid was hitting our area hard. Kids were back in school with masks, and I was seeing Covid a lot at work, but I was still taking precautions, and we were still ordering groceries online, not going to restaurants, rarely seeing extended family or friends, masking everywhere - except my daughter as she was under two years of age.”

Megan and David employed a nanny to care for Chloe while they were at work, and their nanny was unwittingly exposed to infection by a family member who concealed her symptoms.

“This was a time when having Covid still felt like a stigma to many, so our nanny’s family member didn’t tell anyone.  Our nanny was furious.  She explained to her family member that if she had been told they felt ill she would have quarantined away from our daughter.  But what was done was done. Chloe had been exposed and so for days we watched and waited for Covid to hit our home. It felt like waiting for the bomb to drop.  I was intimately aware of Covid incubation periods at this point because of my work as a nurse practitioner, so I knew how long it would be before my daughter would show symptoms.  At this time, depending upon viral load, we were seeing Covid incubation of 3-6 days.  On the morning of day six I woke my daughter up at 5:45 am to get ourselves in the covid testing car line. My toddler was tired and confused, but awake in the back, happily chatting away.  No signs of being ill.  When it was our turn, I decided to get tested too.”

With the tests done, Megan took Chloe home.

“It was my day off, so I spent the day playing with my daughter.  My biggest mistake - I took my mask off at home. We played and snuggled the day away. Early that evening I got a call. My test had been rushed as I was a medical provider. I was Covid negative. No big surprise. My daughter’s test was still pending. She seemed happy and playful. Maybe, just maybe we were in the clear. We got her ready for bed and put her to sleep. Two hours later she woke up crying and when I went in to check on her, she was burning up. Fever of 103F. I didn’t need a PCR or rapid test to tell me what she had. Covid had hit our house.”

Megan and David took steps to try to minimize the impact of the illness.

“My husband and I immediately put on our masks, but I knew I was sunk. I looked at my husband and told him that since he had been working in the home office all day, he was away from her the most, had the least viral exposure and so we needed to keep him away from her as much as possible. We needed to stagger our illnesses. We couldn’t have both parents go down at the same time.”

Chloe experienced what Megan describes as a bad flu, and David had a mild illness, but Megan wasn’t so lucky.

“The next few days my daughter was on and off febrile, didn’t eat much, and was very tired but for the most part it was just like a bad flu for her. Day three she had bad congestion, and she did seem like she was struggling to breathe because of the congestion but that was the worst of her respiratory symptoms. She did have some bad diarrhea on day five - the day I got sick, but after that – according to my husband - she perked up pretty quickly. I got sick on her fifth day. I went down hard. The day before I got sick, I was fine, I was working out during her nap time on the elliptical like I normally would, perfectly fine. The next day I was short of breath walking up the stairs, body aches and pain like I never experienced. Fever, nausea, and bone breaking pain for the first two days. Then slowly I improved. Then I lost taste and smell. By day five I was back doing virtual visits for work, which is when I noticed how bad the fatigue and brain fog were. By day ten I was mostly better, but still struggling with brain fog, some shortness of breath and fatigue.”

Megan believed she was recovering, but her illness took a turn for the worse.

“My husband and I shoveled our driveway, and I headed back to work for four days before I ended up in the emergency room with severe shortness of breath. The doctors ruled out a clot in the lung and I didn’t have pneumonia, so there was no reason to explain why I could barely breathe. That was the start of my journey as a long hauler. I worked one half day after that and have never been able to return to work. The shortness of breath slowly improved but other issues - POTS, MCAS, ME/CFS - all set in.”

While David recovered without incident after a short infection, Chloe wasn’t so lucky.

“Diagnosing Long COVID for my daughter was difficult. She was 20 months old when she got Covid, and I hadn’t heard about Long COVID, even for adults. I had no idea about the looming, life changing, force that was hitting our house the day she got sick. I knew to be worried about hospitalizations, about MIS-C for her, and that week two of infection carried a risk of respiratory distress for all of us. I had no concept that we could get through the acute infection seemingly okay only to end up in a never-ending nightmare, but that is exactly what happened to our family.”

While Megan’s Long COVID symptoms were obvious, the family struggled to identify why Chloe was no longer the thriving child she’d been before her infection.

“It was hard to figure out what happened to my daughter at first. I was so sick with severe shortness of breath that had no identifiable cause, and I was going to doctor visit after doctor visit, I was out of work, I was bed bound much of the time those first few months after Covid. My daughter wasn’t even two years old. Her symptoms were much more subtle, and easily explained away at first. At the time, no one had heard of Long COVID in toddlers. There was no research data out about it. Chloe was among one of the first patients being seen with her issues at Johns Hopkins pediatric ENT (ear, nose and throat) and at that time they had - we were told - about five cases like her. As a medical professional I knew we weren’t wrong, and that what we were seeing was just the beginning. A year later friends from my old practice would send me papers that were published showing new research about how Covid would cause our daughter’s exact symptoms, but even now most people seem unaware.”

Chloe’s Long COVID symptoms manifested in a change in appetite.

“She never seemed to eat the same after Covid, but this isn’t unusual after a viral illness like the flu - and at first, I wrote it off because she was recovering from a bad viral illness. Then, a few weeks after she had Covid, she had her first ear infection. So, I assumed her lack of appetite and decreased interest in food was related to her ear infection. Then, a few weeks later, she got another viral infection. Our nanny was fostering a young boy around Chloe’s age who was in daycare half the time and, as often happens, she was now getting exposed to many viruses. So, the frequent change in appetite wasn’t completely unexpected. She also seemed to be more picky about her food choices. My husband and I had both been picky eaters as children and two years can be a typical age for picky eating to emerge. Plus, things in our house had changed drastically. I was no longer working, was home in bed, bedbound a lot of the time, not able to do as much of my typical parenting duties.”

Things changed at Chloe’s two-year health visit.

“We noticed she wasn’t gaining weight. In fact, she had lost a little weight. And thus began the frequent visits for weight and height checks, and more frequent monitoring of her eating habits.  This is when I began to notice she was becoming more and more picky. Except it wasn’t just picky.  She was becoming extremely limited in her food choices. She quickly became so limited that she had one to two safe foods, and not caloric safe foods at that. I also noticed we hadn’t gone up in clothing sizes at all, or diaper sizes. She had crossed more than two lines on the growth chart - meaning she was officially ‘failure to thrive’. We started with blood work, a nutritionist evaluation, feeding therapy and ultimately a referral to a gastroenterologist. Chloe was waking up at night crying that she was hungry. Typically kids who are picky will still find a way to get enough calories in during the day, but my daughter was not eating enough. She was actually starving, but she was also asking for foods she used to love. She wanted to eat, but when offered these foods, she would bring them to her mouth and then sadly push them away, hand them back and respond, “not hungry.””

Megan pieced together what she thought might be happening.

“At the time I had been experiencing some changes of taste and smell. Nothing to the degree that it kept me from eating entirely, but my husband had long since given up making hot coffee in the house as I had complained that the smell was sickening - it smelled like a skunk. Peanut butter tasted burnt to me, and I used to love bell peppers, but they tasted like soap now. So, I recognized the symptoms of dysgeusia - when foods can taste rancid or foul. My poor two-year-old did not have the developmental ability to explain to us that all her food tasted so bad that she would rather starve than eat. The thing that finally sealed the diagnosis for me was when she had another cold. When she had colds and she became congested she would momentarily eat a wider variety of food - she’d go from having one or two safe bland foods (usually waffles and veggie sticks) to three or four, and sometimes we could encourage her to take a supplement shake like Kate Farms, or include pancakes, but as the cold improved, generally she would once again begin refusing those foods. I shared my observations with her nutritionists and doctors, who said they had seen about five other kids with similar issues post-Covid but had no treatment options.”

The issues became so serious that Chloe’s doctor recommended surgery.

“Chloe’s failure to thrive was so bad that her gastroenterologist decided it was time to discuss the need for a g-tube. A g-tube is a tube that goes directly into the stomach to feed someone if they are not tolerating oral food. I was beside myself, but I also knew that my daughter’s nerves couldn’t heal if she wasn’t getting the nutrition she needed. It had been seven months since she’d had Covid. This is a time in a child’s life when they grow a lot, and nutrition, fat in particular, is especially important for brain development. She was getting none of that. She needed the nutrients. To heal, to grow, to thrive. Seven months without those nutrients can be devastating.”

Megan isn’t sure whether it was the zinc supplements, smell therapy, or another illness that was responsible for the change, but in July 2021, Chloe turned a corner.

“In July 2021, Chloe got another bad cold, but this time she started drinking more of the Kate Farms, and even after the cold resolved she continued to drink one Kate Farms a day, and that was enough for our team to say we could hold off on surgery and instead try an appetite stimulant. So, with the help of her oral supplement drinks and an appetite stimulant she slowly began to put on weight. She lived on those drinks for many months as her main source of sustenance but slowly she began to eat again, and she began to grow. By her three-year birthday she was catching up, and now she is four, she is no longer on the appetite stimulant. She only gets 1/3 of a supplement at bedtime (down from three supplements a day). She is still on many vitamins, we still do feeding therapy as she is still a picky eater but she is now more of a more “normal” picky eater. She is back on her growth curve. She is growing well, developmentally doing very well, and we are so thankful for that, but we are also very cautious. I don’t want her getting Covid again, because it was hard on her body once and I don’t know what it would do to her if she got it again. We have no idea long term how Covid will affect developing bodies and brains. I have developed POTS, MCAS and ME/CFS from Covid. I will always keep an eye on her as she may be at a higher risk for these issues as well. She learned how to wear a mask at age two and has been a great mask wearer ever since. She will wear a mask when she starts school this fall. We don’t take chances with her health after all we’ve been through.”

Megan has a message for other parents.

“As a provider at the very beginning of Covid, I heard so many parents say Covid doesn’t affect kids and I would always say “that we know of YET.”  I would remind parents in my office “we don’t know what we don’t know about Covid yet.” Many people think that three years in we know a lot about Covid, but that isn’t true. We are still learning new things about viruses like Epstein Barr Virus, which has been studied for decades. So, to think we have a good handle on something as new as Covid is true hubris, and the virus is still evolving and changing. We have barely even begun to study what it does to children, but we do know children are not spared from Covid. I am not saying to live in fear, but I am recommending parents take adequate precautions especially when cases are on the rise in your community. Masking is not quite the toll it seems when you consider what life is like with a tube in your stomach.”

Megan also has a message for the government officials in charge of the COVID-19 response.

“I think we need to be honest with the public. We haven’t studied long term effects of Covid in kids yet, because Covid hasn’t been around long enough. So, we don’t have answers, but we know enough to know that there will be some risks. Masks need to be encouraged. In the 1980s, people were up in arms calling America a socialist country because of a new law that was being introduced where you couldn’t drink and drive and you had to wear a seat belt. People eventually came around. They will eventually come around to masks. Let’s stop worrying so much about poll numbers and start listening to science. Our children’s future depends on it.”

While vaccines are effective in preventing severe outcomes of COVID-19 infection in children1 and there is some evidence of a protective effect of vaccination against the development of Long COVID in children2, the US National Institutes of Health recently provided updated guidance to clinicians highlighting the long-term risks of COVID-19 to children even in the context of prior immunity from vaccination or reinfection, and many public health agencies around the world recommend the use of a vaccines-plus strategy, including masks and ventilation, to reduce the risks of long term complications from COVID-19.

We’d like to thank Megan for sharing her family’s experiences, and, in addition to the obvious lessons about COVID-19 safety and Long COVID, we’d like to highlight the difficulty of diagnosing Long COVID in children. An altered sense of taste is one of many symptoms children can experience following COVID-193-5. A new onset eating disorder after viral infection might need greater investigation than before the pandemic.

 *Meagan, David, and Chloe are pseudonyms, used because their family has suffered abuse after previously telling her story in local media.