12-year-old girl from Covington, Louisiana, came out of her pajama room shortly after 7 a.m., ate half a bowl of Rice Krispies, and made a Zoom call with her sixth-year social studies class. . She felt bad all weekend with twisted abdominal pain, vomiting and a fever of 101.5, but seemed to be on the right track.
The strange thing, she remembered, was that her lips were bluish in the mirror and she was super tired. In fact, she fell asleep unexpectedly. On the couch. In front of his computer. In the bath.
“I thought I was feeling a little bit better,” she said, “but I couldn’t keep my eyes open. “
With all the news going around the pandemic, her parents, Sean and Jennifer Daly, were watching their daughter’s illness closely. She was in good health and had no coughs, shortness of breath or other symptoms typical of covid-19, so Jennifer, a radiologist, initially suspected appendicitis, a kind of stomach bug or perhaps the flu.
That afternoon, they took Juliette to the emergency room, where the doctors noticed an unusual constellation of symptoms pointing to a different problem. His heart rate was extraordinarily low, jumping in the 1940s when he should have been between 70 and 120 beats per minute. And when they clenched his nails, they turned white and remained white when they should have turned pink again.
Juliette was in some sort of toxic shock, and her heart had become so inflamed that it barely beat.
It was still relatively early in the epidemic on April 6, and the hospital had not seen other children in this state. But doctors knew enough about the pathogen’s effects on adults to immediately suspect the coronavirus.
Cases like Juliet, a confusing inflammatory syndrome in children believed to be linked to Covid-19, have been appearing in different parts of the world for months, but it is only recently that health officials have started following the phenomenon.
The number of infected children, although still small, is estimated at a few hundred – higher than anyone expected for an illness that would do little or no harm to children. British and Italian doctors issued alerts in April, and the American Heart Association warned last week that some pediatric patients “were getting very sick very quickly,” urging providers to assess them immediately.
On Thursday evening, the Centers for Disease Control and Prevention issued a notice and named the unusual disease – multisystem inflammatory syndrome in children, or MIS-C.
It is estimated that more than 100 children are affected in New York State, about half of them in New York, where three died. In recent days, medical centers in 14 other states have reported similar cases. Scientists still believe that most children and young people only have mild illness or not at all if they are infected with the coronavirus. But they are concerned about the critical nature of inflammatory syndrome cases, which appear to appear in children weeks after a wave of infections in their communities.
Texts between Jennifer and Sean Daly on April 6.
Texts between Jennifer and Sean Daly on April 7.
LEFT: Texts between Jennifer and Sean Daly on April 6. RIGHT: Texts between Jennifer and Sean Daly on April 7.
“We have been seeing children regularly for the past two months,” said Roberta DeBiasi, an infectious disease specialist at the district’s National Children’s Hospital. “But this presentation is clearly different. It’s not that we just haven’t noticed it before. This is a new presentation. And the fact that it happens two months after the virus’s initial circulation gives weight to the idea that this is an immune-mediated phenomenon. “
Jennifer Owensby, pediatric intensivist at Robert Wood Johnson University Hospital in Rutgers, New Brunswick, NJ, said the first group of children she had seen with Covid-19 appeared to have classic respiratory symptoms, such as l shortness of breath. Now, she said, “The vast majority arrive with symptoms of heart failure, which is extremely rare in pediatrics, especially in normal and healthy children – which is why this is so alarming.”
Writing in the Lancet medical journal this week, Italian doctors reported a group of 10 children with inflammation in the epicenter of the Bergamo coronavirus. The cases appear to have the characteristics of a disease first identified in Japan, known as Kawasaki disease, which causes inflammation of the blood vessels and includes persistent fever. But these children were older than usual with Kawasaki, which usually strikes children under the age of 5, and they had more serious heart problems.
Just like Juliette, who is among the first children known in the United States to develop a multisystemic inflammatory syndrome.
Sean Daly was in the hospital with “Jules”, as he sometimes called him, while Jennifer had been on the phone since work.
Transportation planning consultant with no medical history, Sean remembers he was confused when doctors told him they were giving his daughter an epinephrine drip to help his heart and sent him to a bigger hospital with more expertise and equipment. They said they were going to put a fan over her to stabilize her for the helicopter trip to the Ochsner Medical Center, about 80 km from New Orleans.
Sean, unaware of the seriousness of his daughter’s condition, thought of the absurdity of his shorts and thongs among the extraterrestrial-looking hospital workers in head to toe protective gear. And he thought about how, a few minutes earlier, his daughter had been good enough to cross the parking lot and go to the emergency room. He heard an announcement about something called a “blue code” and wondered why more and more people were rushing into his room.
When the treating doctor finally came out, Sean recalls, she was shaking. She said that Juliet had had a heart attack and that it took her almost two minutes of CPR, or cardiopulmonary resuscitation, to resuscitate her.
“It didn’t work so well with me,” he said. “She told me that Juliette was” back “, and I said to myself,” It’s good. I didn’t know she was gone. Fortunately, I was not in the room. I don’t think I would have handled that. ”
Jennifer was hysterical.
“It was horrible. It was beyond everything. It was shocking to see how quickly this happened, “she recalls.
“Is she alive?” “
When Jennifer arrived at Ochsner, she did not understand how she could have beaten her daughter there. She had driven for about an hour in a semicircle around Pontchartrain Lake while Juliette had been flown.
“I was crying and panicking,” she recalls. By the time she was able to catch a nurse, she had feared the worst. “I just need to know one thing now,” she demanded. “Is she alive?” “
Juliette’s helicopter had been delayed because she had coded a second time and, again, the doctors restarted her heart. But by the time they took her to the pediatric intensive care unit of the new hospital, some of her other organs had also started to fail, probably because the heart was unable to pump blood filled with oxygen they needed.
Juliette’s liver and kidneys were in shock. There was blood in his lungs. Her pancreas was inflamed.
Heartbeats are controlled by electrical impulses that travel through the right and left branches of the heart at the same speed. Somewhere in Juliette’s heart, a block made the system go haywire.
A team of pediatric cardiologists has given Jennifer a name for her daughter’s condition: acute fulminant myocarditis – a sudden onset of heart failure, shock, or life-threatening arrhythmias.
Doctors started taking medication, requisitioned a heart bypass machine in case it was needed, and prepared Jennifer for the possibility that Juliette needed a transplant.
“They weren’t sure if it would happen the first night,” said Jennifer. “It was a total nightmare. “
Texts between Jennifer and Sean Daly on April 7.
Texts between Jennifer and Sean Daly on April 10.
LEFT: Texts between Jennifer and Sean Daly on April 7. RIGHT: Texts between Jennifer and Sean Daly on April 10.
Meanwhile, Juliet’s nasal swabs returned positive for coronavirus and adenovirus, one of the causes of the common cold. The results are disconcerting because none of the other family members – the Sean brothers, Jennifer or Juliet, ages 5 and 16 – were in the least ill. But if her condition was post-viral, occurring weeks after infection – as scientists increasingly suspect in such cases – there were a number of ways she could have been exposed, because school was still in session and orders to stay at home had not yet been issued.
Since no member of Juliet’s family had symptoms and test kits were scarce in the area, the doctors chose not to test them.
After confirming the diagnosis of coronavirus, doctors gave Juliet an immunoglobulin product that has been used successfully in Kawasaki patients. They ruled out the use of hydroxychloroquine, the antimalarial drug touted by President Trump, because they were concerned about heart side effects given his already fragile heart condition.
While Jennifer was sitting in the room with full protective gear, including a face shield, a mask and a dress, she held her daughter’s hand. Only one parent was allowed, so Sean stayed home with the boys.
Unable to sleep, Jennifer started a group text chat to keep family and friends informed. She played Juliet’s favorite song – “Moves Like Jagger” from Maroon 5 – swore to be as optimistic as possible and prayed.
That first night was torture. Juliette’s heart started and stopped, beating too fast then too slowly, as the doctors adjusted the medication. But in 24 hours, almost miraculously, it seemed to stabilize. The numbers on his kidney and liver labs were moving in the right direction, and the echocardiogram of his heart had improved.
While Jennifer joked with her husband that Juliette slept a lot, there were cases when her daughter woke up and seemed to understand her completely.
“We love you,” said Jennifer. “You will get better.” “
She talked about having an Easter egg hunt in the backyard with her brother, Dominic.
Juliette was able to lift her thumb and shake her hand.
“I’m optimistic, she’s neurologically intact,” Jennifer sent Sean. Her tone was clinical, but it was one of her worst fears as a mother.
On Thursday, the doctors were confident enough about Juliette’s progress to remove her from the ventilator, allowing Juliette to breathe on her own. She was still taking a lot of medicine and was confused and upset by all the tubes coming out of her body.
Jennifer remembers reassuring her that she was safe in the hospital, but that she was still very sick and weak.
Juliette’s reaction was not what she expected: “No mom, I’m not weak. I am strong! “
“The first day I regained consciousness, I panicked. I really wanted to go home, ”recalls Juliette. She said she was terrified of how everyone kept walking on all of her cords, which were tangled and plugged in because the nurses wanted to limit the number of times they entered her room. The bandage on his neck was “far too sticky for humanity.” And she could taste the saline they were giving her via IV, and it was bad.
Then on April 15, almost as suddenly as she had been admitted nine days earlier, the doctors told Juliette that she was good enough to go home.
Juliette does not remember the moment when her heart stopped twice, and her parents are grateful to her.
She was discharged from four medications – two for the heart, an anticoagulant and one for her pancreas – but rebounded physically in no time. She has been able to return to her school’s online courses, where she continues her Ace sequence, and has no trouble cycling in the neighborhood.
Doctors who monitor her closely say the medication is temporary and they hope she will recover completely. On Friday, she returned to Ochsner for the first time since her hospitalization for a month-long follow-up appointment. Jake Kleinmahon, the pediatric cardiologist who treats him, said he was delighted when the echocardiogram of his heart looked “completely normal”. Like other children with myocarditis, she is deprived of competitive sports for six months (Juliette’s parents say that this is not a problem because she does not really like to sweat) but is also free to engage in activities.
“I do not expect her to have any complications or long-term limitations, even if she fell seriously ill,” said Kleinmahon. “She is a fighter and a brave young girl.”
The only strange change, said Juliet, is that she came out of the hospital with an avid bacon monster, which she didn’t like before. And she didn’t want any more donuts, which had been among her favorite foods. Such taste changes are not uncommon after intensive care, doctors say.
The emotional part of his recovery was more difficult. Juliette is thinking of other children who could get sick with the same syndrome. She says she would advise them to “not panic too much because panic makes things worse. Because that’s what I did, and it didn’t help at all. ”
She worries more about her family and friends, about their future and hers, and about the strange world of viruses that she knew nothing about before.
“I feel like I’m a little embarrassed about my body because I don’t know what’s going to happen next,” she said. “I worry about how there are a lot of other things you can get. “
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