This mother made six attempts to raise the alarm about her sick toddler. Doctors told her he’d be fine. They were fatally wrong

On the morning of 30 November 2022, Keri-Sue McManus sat down with her three-year-old son, Micah, to watch the TV series Daniel Tiger’s Neighborhood. A preschool animation about a tiger cub, the show sets out to teach life lessons. That day, Keri-Sue chose a specific episode, Daniel Goes to the Hospital, for a reason. She planned to take Micah to hospital and was using the cartoon to reassure him that everything would be OK.

She was sensitive to his mood because it wasn’t the first time Micah had visited the emergency room in recent weeks. In fact, it was the third time Keri-Sue had taken her toddler to hospital, and the sixth time that month she had contacted various doctors about his deterioration: he had a lack of appetite, weakness, fatigue and severe dizziness, and these symptoms were getting worse.

Each time, she was reassured he would get better. One medic even implied that their frequent visits to the hospital were giving her son anxiety. It was suggested the mother should think twice about taking him in again, for his own sake – hence the cartoon.

In the Daniel Tiger episode, the cub, nervously approaching his appointment, is told: “The hospital is a place where doctors and nurses work together to help you get better.” But that’s not the way it worked out for Micah, who died just hours after he arrived on this third visit, after a series of clinicians failed to take his condition seriously.

“Daniel goes to hospital and the doctors fix him and everybody’s so nice. And then he gets to go home,” Keri-Sue remembers of the cartoon. “It’s like a fairytale that we didn’t get to live out.”

Micah’s story casts light on how parents, especially mothers, are frequently patronised and dismissed by the medical profession. “I can’t think of any other way to describe it besides gaslighting,” Keri-Sue says when we speak. “It’s your own child, so you get a feeling or you notice something. You know your child’s normal state better than anybody else and you’re paying attention more than anybody else. I’ve relived all those moments a thousand times. What if I’d gone to this doctor; what if I’d said it this way instead of that way. But the reality is that they weren’t paying attention and doing their job.

“Part of my grief has been trying to wrap my head around how it all happened.”

* * *

When she was 24, Keri-Sue lived in Spain for a year. Out shopping one day, she saw a cute bedroom sign that said Mi habitación (My room) with a little boy riding a horse. “I bought it and said, ‘I’m gonna have a son someday, and he’s gonna hang this in his room.’” The sign is still hanging there when I talk to Keri-Sue, two days before what should have been Micah’s fifth birthday.

Micah was Keri-Sue’s first child with her husband, Dan. “I was so excited. I knew immediately, I just had this feeling when I found out I was pregnant that it was a boy.” She had only been pregnant a couple of weeks when they chose his name.

The family lived a charmed life on a farm two hours north of New York City. Weekenders are drawn to the area’s natural beauty, with the Hudson River cutting through the valley and the Catskill mountains close by. In 2020, when Covid hit, there was an influx of people looking for a taste of the bucolic life.

Their farm grows 200 crops, mostly organic vegetables, that they sell at farmers’ markets and to retail stores. Micah loved the lifestyle. “He was so proud of it. Everywhere we went, he’d say, ‘I have a farm.’ I wondered at the time if he thought everybody had a farm, because when kids are small it’s like, that’s their only point of reference.” Micah would feed the chickens and collect the eggs. He loved watering their garden and planting and picking flowers. “We have a farm crew, and he would pick flowers and then walk around the field and give them out to the crew. He loved making people happy; if he saw something got a really positive reaction, he would do it again.” Keri-Sue watched her son grow up quickly. She would occasionally try to freeze a moment, to make sure she was fully aware of her good fortune.

On 14 October 2022, Keri-Sue and Dan were due to be married. But their son, who had turned three just 12 days before, woke them up in the night, burning with fever. The wedding was set to be a low-key event – just the couple and two friends who were witnesses; they were hoping Micah could join them after the ceremony. Instead, they rushed home to be with him as he lay lethargically on the couch. The next day the doctor told them that he had Covid, and, while the fever went away after a week, the toddler never fully bounced back. His mother watched the pulse in his neck, drumming against the skin.

Micah’s primary-care doctor told Keri-Sue the elevated pulse was nothing to worry about, just swollen glands, a vestige of Covid. But Micah, who had grown out of napping, had begun to doze off during the day. He didn’t have the energy to return to his local playgroup. A few times Keri-Sue tried to take him there, but he looked like he might fall asleep in the back of the car, so she aborted each trip. Besides, knowing how playgroups are hotbeds for viruses, she wanted to make sure he was better before she exposed him to any more illnesses.

Micah never went back. He stayed home for weeks, summoning up the energy to play in the leaves and dress as a cowboy for Halloween. But at the start of November he came down with RSV (respiratory syncytial virus). Although common, RSV was particularly virulent that year because it hadn’t been circulating as much during the lockdown years.

Both Micah and his baby sister, Chloe, coughed their way through the week, but while Chloe, who was two years his junior, soon regained her vitality, Micah became weaker and weaker. He didn’t want to eat. He didn’t want to play. His doctor gave him antibiotics, having suggested that he had a lingering sinus infection from Covid, and that some kids just take longer to recover. But his mother remained concerned.

By mid-November, Micah was still barely eating and wouldn’t even watch TV, so for the first time Keri-Sue drove her son an hour to the Albany medical center hospital. Despite his elevated pulse, he didn’t even make it past the triage room and Keri-Sue was told to follow up with his regular doctor.

She says she didn’t have much luck with his regular doctor, either. “I feel like he was just kind of stringing me along. He was like, ‘Kids just take a while to get better. You need to have patience.’ The whole vibe was that I was giving him anxiety and not allowing the natural process of the illness to take place.” Micah himself tried to articulate the dizziness that he was experiencing: “I feel like I’m going to fall down,” he kept saying.

The call logs from the time show Keri-Sue was phoning the doctor every few days. “I was like, ‘He still won’t eat. I don’t know what to do. Should I bring him back to the hospital?’ And they just kept saying to give it more time.” At one point, the receptionist said pointedly: “I knew you would call – you call every day!” Keri-Sue was made to feel like an irritating mother who didn’t know when to give it a rest. But, naturally, she deferred to the clinicians. “Part of me wanted to believe them that I was making him anxious and overreacting, because I wanted him to get better. So if they said, ‘He’s fine, he just needs a few more days,’ I’d be like, ‘Oh, OK, good.’” She was reassured.

By now a month had passed since Micah had become ill. During that period, the whole family had been sick twice, but Micah was the only one who had never got better. He refused to walk, and was increasingly frail, so Keri-Sue started having to carry him around. On 23 November, 10 days after their first visit, she took him to hospital for the second time.

“I’ve replayed this scene a million times, because it didn’t have to go this way,” Keri-Sue says. She remembers the resident doctor being cold and accusatory: “‘Why are you bringing him here? You just brought him here.’ And I said, ‘Right, but he’s just not getting better. He’s not eating. He won’t walk. He’s pale, he’s tired, he seems winded to me.’ I told them everything, and she really gave me a hard time, to the point that I actually started to cry.”

Keri-Sue tried to explain: “You’re telling me that I’m wrong, but I wouldn’t have brought him here unless I really was worried.” The doctors carried out some examinations: they checked for any rash and listened to Micah’s chest with a stethoscope. He was given anti-nausea medicine, which allowed him to drink some apple juice and eat a saltine cracker. And then he was discharged. As they were leaving, Keri-Sue remembers a doctor saying: “You know, he’s probably anxious you keep bringing him to the hospital.” They advised the mother “not to bring him for a while and let him get better at home”. The paperwork for this visit states: “Micah may be experiencing some stress related to having recently been ill.”

At home, Micah became clingy, telling his mother over and over again that he loved her. “If I left for any amount of time, I’d come back and he’d say, ‘I missed you so much, Mama. I love you so much.’” Keri-Sue stopped working on the farm in order to dedicate all her time to her son’s recovery. She took to heart the doctor’s advice, and started playing them both meditation tapes. “I was just trying to do whatever we could to relax. But he wasn’t getting better.” He was listless. When he ate, he only wanted to do so lying down. He still talked about the sensation of falling.

On 29 November, Keri-Sue called her regular doctor’s office again, begging them to squeeze Micah in for an appointment. She had stayed up all night Googling, writing down possible causes of her son’s illness, including liver problems, long Covid, inflammation of the heart …

“I said we need to be more thorough, and went down a long list. And every single one of them, he was just like, ‘No, no, that’s not what’s happening. Kids are not getting long Covid. No, it’s not anything with his heart, or his fingers would be blue. No, it’s not his liver.’ When we left, I had been given a prescription for an allergy medicine.”

Unsatisfied, Keri-Sue called her doctor again later that day to request an echocardiogram, a scan of the heart and nearby blood vessels. She says she was told it wasn’t necessary. She couldn’t sleep. “I just had a horrible feeling.” In the middle of the night, Micah got up to pee, and said, ‘Ow’. He pointed to his abdomen as the source of pain. “I knew it was his heart or liver. I just knew.”

That third time at the hospital, everything seemed chaotic, and the staff appeared to be overwhelmed. (Albany medical center hospital reportedly has some of the longest ER waiting times for adults in the US.)

“You can’t get a response from anyone and you don’t feel like you get to talk to the same person twice,” Keri-Sue says. Finally, an ultrasound was ordered for Micah’s abdomen. Keri-Sue sang Hush Little Baby to her son and tried to keep her eyes off the screen.

The ultrasound technician finished the scan and wished them luck. “I just kept saying, ‘They’re gonna help you, they’re gonna help you. These people are so nice.’ They weren’t even being that nice,” Keri-Sue recalls, “but I just kept saying it because I really wanted to make him feel safe.”

She started recounting stories from when she was young. “I told him how my parents, my brothers and I went to Cape Cod for the weekend. Our car broke down on the side of the road and we had to hitchhike there. I was scared because we were standing on the side of the highway. But these people with a tow truck came and picked us up, and saved the day. So we made it and we were fine and happy. I was trying to create this analogy of how something scary can happen, but then it turns out OK.”

Dan joined them in the hospital; the hours passed as they waited for the ultrasound results. Occasionally, someone would pop their head in the door and say, “Has anyone come to see you yet?” and disappear. Eventually, the doctors confirmed Micah had an enlarged heart and blood clots on his liver. From her earlier Googling, Keri-Sue knew straight away he needed blood thinners, but the clinicians said they wanted to do more tests and start treatment in the morning. At this point, it was early evening, and the family, who had been at the hospital all day, worried about letting another night slip by. They were reassured: “We have a whole team of doctors that are working on this, and this is really treatable stuff and he’s very stable right now.”

Admitted to stay overnight, they were kept waiting in a cubicle in the ER. Keri-Sue lay next to her son hugging him as he slept. At around 8pm, a nurse came to take observations and put fluid in his IV. Within minutes, Micah woke and started gasping. His eyes turned yellow and, though he hadn’t needed to pee all day, he urinated across the bed. Keri-Sue ran into the hallway yelling that something was wrong. Some of the nurses hurried in, under the impression that the problem was that he had peed. “They offered to get him a diaper and I’m like, ‘No, something is wrong. Look at my kid, he’s gasping for breath.’”

And then, suddenly, after being ignored for weeks, Micah and his family had a throng of people surrounding them. The doctors put him on oxygen, but his heart rate was plummeting. They called a code blue, the signal for a cardiac arrest, and started CPR.

“I stood there in this tiny little room while person after person gave my son CPR. For about an hour and a half he looked like he was dead or dying. I was just pacing around saying, ‘Micah, I’m here. I’m here.’ At one point, they said: ‘You should leave the room.’ So we did. We went to the room next door and just stood there asking ourselves: What has happened? How is this real?”

A blood clot had travelled to Micah’s lungs, causing a pulmonary embolism. His heart had stopped beating and they couldn’t revive him. Nothing could be done. They put Micah in his mother’s arms and started counting. One, two, three … when they reached 60 they declared him dead.

Keri-Sue and Dan knew they couldn’t just sit there for hours with their son’s lifeless body, but at the same time they couldn’t fathom leaving without it. One of the staff offered to push Keri-Sue out to their car in a wheelchair. But, eventually, they walked through the waiting room and out into the cold night air, passing lines of children with their parents on the way.

Apart from receiving a small clay imprint of their son’s hand, taken after he died, they had no further communication from the hospital. There was no explanation, there were no condolences. They simply never heard from them again.

***

Keri-Sue contacted me after reading in the Guardian the story of my daughter Martha, who died, aged 13, of septic shock as a result of medical negligence. We live on different continents, in countries with different healthcare systems; our children were different ages and died from different illnesses. But we have this in common: we tried to raise the alarm about our child’s deteriorating condition and we were condescended to and ignored.

So when Keri-Sue describes how she plays these memories over and over, willing a different outcome; when she says that “part of me never left the hospital, is still living that moment, hoping things change”, I know exactly how she feels.

“It was so similar to what happened with you,” she says. “There was a lot of time and a lot of opportunities for doctors to take it seriously.”

Martha was an inpatient at King’s College hospital (KCH) in London. In our case, key bits of information about my daughter’s condition – details that would have helped me advocate for her – were held back because they saw me as a problematically anxious mother.

Although KCH policy states that parental concern should prompt discussions about a critical care review or a move to intensive care, with Martha the doctors decided not to arrange this potentially life-saving intervention on the basis that it would increase my anxiety.

Related: ‘We had such trust, we feel such fools’: how shocking hospital mistakes led to our daughter’s death

Much has been written about the diagnostic value of parental concern in medical literature. Paediatric doctors-in-training are taught to “listen to the mother and father, they know the patient better than anyone”. But that’s rarely how it plays out. Doctors too often regard parents’ involvement as a problem rather than a vital contribution: the family hasn’t had years of training; in a hospital they have no status and are treated as though they know nothing.

And, too frequently, a well-intentioned instinct to put a parent’s mind at ease can inadvertently cause a doctor to reassure themselves. In post-death investigations into what went wrong in Martha’s care, my husband and I were asked a memorable question: “Were you reassured by the doctors?” The problem, of course, was that we were falsely reassured – and not listened to.

On 29 November 2022, 24 hours before Micah died, 13-year-old Chloe Longster was admitted to hospital in Kettering in the English Midlands. She had been suffering from severe chest pain, a cough and other cold-like symptoms before her condition rapidly developed into sepsis. Her mother, Louise, tells me she was with her the whole time. “I felt like I had to try and convince them that she was poorly.” Echoing Keri-Sue, she says: “It was like they were trying to gaslight us.”

This month, a coroner ruled that a hospital’s neglect contributed to Chloe’s death. There were numerous missed opportunities for sepsis screening and treatment. “I really believe Chloe died because there is a pervasive belief that parents are an irritant and they’re wrong,” Louise says.

In cases such as Micah’s, a doctor’s counter-argument might be that the vast majority of children they see who have non-specific symptoms like his do get better. Unfortunately, children often exhibit symptoms of serious illness in different ways from adults.

Ron Daniels is an intensive care consultant and CEO of the UK Sepsis Trust. He notes: “Children can compensate for illness longer than adults can. In the case of sepsis, a child can increase their heart rate to a greater degree than an adult, which means they sometimes don’t appear really sick until very late in the day – at which point they need very urgent intervention.”

Equally important is that children communicate differently. “Oddly, they are more stoical than adults, and less likely to make a fuss.” Younger children especially perceive pain and discomfort in ways not always obvious to doctors. “Which means we have to listen to the experts, which in this case is the parents or carers, who just know when their child is seriously unwell.”

Daniels accepts that whatever doctors are taught in med school, listening to parents remains a challenge in practice. “There’s a fear that if we empower people we’ll be overrun by hypochondriacs and time-wasters. But most good doctors know that’s not the case. No one wants to spend a lot of time in A&E or a hospital ward, because they’re not pleasant places to be.”

Or as Louise Longster puts it: “Chloe had never been to hospital. We’re not those kinds of people. Who sits in A&E for hours on end voluntarily?”

Which suggests those parents who do keep pushing deserve to have their fears taken seriously, especially if, like Keri-Sue and Dan, they don’t have a long history of repeatedly contacting a doctor.

This is the reason I have campaigned for Martha’s Rule, a patient safety initiative that allows patients, families and junior staff to trigger a rapid review if they have concerns about a patient’s deterioration. Martha’s Rule is being introduced at 143 hospitals in England. Micah’s story confirms, however, that a poor listening culture is not a problem unique to the NHS: giving patients and their families more power to raise an alarm is something that needs to happen in healthcare systems around the world.

As it stands, the McManuses have filed a lawsuit against Albany Med Health System for negligence and failing to perform the necessary diagnostic tests. (When approached for comment about Micah’s care, a spokesperson said: “ We cannot comment on pending legal matters.”) They are also campaigning to introduce the Grieving Families Act, which argues that New York state law inadequately compensates families like them who lose children because of medical malpractice.

New York is one of just two states that place little value on the life of a child who doesn’t contribute economically. (The law is similar in the UK, where only negligible compensation is ever given to parents after a child’s death from medical mistakes. I recall one legal firm’s website suggesting that, owing to the high cost of raising children these days, there’s an argument that parents are in fact better off once their child is dead.)

Naturally, money is of little consequence when it comes to the avoidable death of a child, but there’s something about a lack of accountability and recompense that feels like an affront. As Keri-Sue says: “This is not the tragedy to me. The tragedy is that I lost my son. The [resistance to the] Grieving Families Act just makes me feel like my tragedy doesn’t matter much to New York.”

* * *

Flicking through old photographs these days, Keri-Sue finds herself looking for signs of what was to come. “I feel like a murder-mystery detective. Since he died, I’m trying to find clues. But there is nothing to find. I guess I’m just looking for anything; looking for evidence of him.”

The McManuses have turned part of their farm into a memorial garden for Micah. It is full of colour – lots of sunflowers and zinnias and cosmos. Keri-Sue says she has decided to plant mostly annuals there, which complete their life cycle in one growing season, from germination to flowering, setting seed and dying. Annuals have a shorter lifespan, but they bloom consistently and when they flower they are bright, beautiful, unmissable.

“They remind me of Micah,” she says. “He wasn’t here very long. But while he was here, he was in full bloom.”

• Merope Mills is editor of the Guardian’s Saturday magazine