Ella is sick

Daphne fourth grader recalls battle with rare disease after COVID-19 diagnosis

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Last January, Ella Murphy woke up with a fever and swollen lymph nodes – a staple of childhood seen many times before in the Murphy house where six children live and grow. The family had just gathered for Christmas, including two teens who had traveled from college campuses. It was probably the flu, or a common virus.

The next day her neck was visibly swollen. Doctors prescribed her an antibiotic for infected lymph nodes.

That night the then 9-year-old began having severe abdominal pain and her temperature sent the mercury to an astonishing 105.5 degrees.

Ella was sick.

Her family returned to the doctor. Something was wrong. Something was very wrong.

At the time, her mother Amy Murphy, never considered that Ella’s current condition was tied deep in her tiny system to a COVID-19 diagnosis the family muscled through just six weeks earlier.

The family was exposed to the virus after her husband returned from a business trip, unknowingly picking COVID-19 up along the way. Amy Murphy said the family of eight had symptoms of varying degrees though none were more severe than “just not feeling great,” she said.

Ella, the youngest of the family, had one of the mildest cases in the household. 

But now, two months later, Ella was admitted to Thomas Hospital. She was sick, very sick, and the Murphys needed answers. Soon after Ella’s symptoms appeared, they had their first clue. A friend’s child had contracted COVID-19 and then MIS-C, a multi-inflammatory syndrome. She urged Amy to look into the possibility.

The doctor on call said Ella didn’t meet the criteria for that diagnosis and wanted to see how she would progress.

That night as her youngest child’s condition worsened, Amy asked another doctor about MIS-C. The doctor assured Amy they would revisit the idea if Ella didn’t improve.

By the next morning, Ella wasn’t just sick, she was suffering. 

“She could barely sit up, she had pain everywhere and her neck was so swollen on one side,” Amy Murphy said. “It was really scary.”

Again, she asked about MIS-C. The possibility was considered, but again, Ella didn’t meet the criteria.

There was no tell-tale rash, an obvious symptom that had been seen over and over in other cases. But with just 4,404 cases of MIS-C documented in the U.S. by July 25, 2021, most doctors nationwide were seeing the disease for the first time, if ever.

That night, Amy and her husband, Pat Murphy switched spots at Ella’s bedside where only one family member was allowed to remain. After 24 hours, he had the first look at his ailing daughter.

At his urging the staff drew her blood. It showed that her enzyme levels were elevated. Ella’s body was indeed fighting MIS-C.

Multisystem inflammatory syndrome in children (MIS-C), was first identified in April 2020 by doctors in the United States and the United Kingdom. It most often occurs in school age children who have tested positive for COVID-19. The condition is rare but extremely dangerous. As of July, 2021, 37 deaths among children have been reported in the U.S.

MIS-C causes an inflammatory reaction in the body which brings about fever, rash, red eyes, diarrhea and vomiting. The inflammation can damage the heart, blood vessels and other organs, and in the worst cases cause death. Many reports say the disease is similiar to toxic shock syndrome and Kawasaki disease, both of which cause widespread inflammation in the body.

In Alabama, only 108 cases of MIS-C have been reported since the beginning of the pandemic. The disease was so rare and so new that many doctors had never seen a case in person.

“We were told they had not seen this at Thomas yet,” Amy Murphy said.

As a result, Ella was sent immediately by ambulance to the University of Alabama at Birmingham where the staff had treated dozens of other MIS-C victims and developed a MIS-C treatment plan.

During the six-hour drive, Ella was so ill that she remained unconscious for most of the ride.

By the time they arrived, the disease had practically taken over. 

Her neck had swollen on both sides, she hadn’t eaten in days, and she was still feverish. Her stomach had swelled as if it was filled with a giant balloon. Her eyes were swollen shut. A rash started to spread across her body.

At this point, four days into the disease, Ella’s case was textbook. Early on doctors, Amy Murphy said, were looking for a rash or other symptoms that Ella hadn’t exhibited yet.

“It was so new and had not been seen in Baldwin County,” Amy Murphy said.

It took 10 days before Ella’s body finally responded to a treatment of high dose steroids.

For more than a week, the swelling expanded and pushed her tiny body to its limits. Every part of her burned and hurt.

“We couldn’t touch her anywhere, she would scream like someone was stabbing her,” Amy Murphy said.

During the healing process, Ella tested positive for COVID-19, meaning six weeks after her exposure she still harbored the disease. She was moved to a covid unit where doctors could monitor her breathing, labored by the fluid in her abdomen and around her lungs.

“It was a stressful, terrifying ordeal,” Amy Murphy said.

Once doctors rated her well enough to head home, Ella still had a long recovery.

Before her diagnosis, Ella was a competitive gymnast, a beast with chiseled muscle form, her mom said.

After MIS-C, her eyes were sunken, her face swollen, her belly was giant and hung like a balloon on a toothpick.

At home Ella could not get out of bed, walk or go to the bathroom alone for nearly a week. Doctors forbid her from doing anything active for at least two months.

For the little girl her mom calls a “fireball” the benching was difficult as she slowly regained her strength.

Now, 10 months later, Ella is better.

She will return again to the high bars and has a rigorous competition schedule for the new year.

But she is tired, often. Her energy is not the same as it was before MIS-C tore through her body.

“I wanted to come back 100 percent and I wanted to get to it right that second, but I didn’t,” Ella said. “I’ve had to work on conditioning to get my muscles back.”

Ella who is a fourth grader at Christ the King this year has her sights set on the Olympics.

“I want to be the best gymnast ever,” she said. 

MIS-C shouldn’t hold her back again, her mom says. Thankfully, the disease never impacted her heart or other organs.

It did, however, shoulder the grade schooler with a new struggle: anxiety.

Her mom said Ella has worked with a therapist to talk about the life altering experience and the work of recovering the skills she temporarily lost.

The Murphys want other families to know the symptoms and warning signs. MIS-C is treatable if it’s caught in time.

 “Almost all of the MIS-C patients were normal, healthy kids,” Amy Murphy said. “For some reason the body goes into overdrive with its immune response and causes whole body inflammation.”

Today Ella is doing great and is thankful for the family that advocated and stood by her in the face of an unknown and new disease.

“It was very scary to go through that,” Ella said. “Luckily I had my mom with me to go through it with.”