In the Intensive Care Unit (ICU), Lucille stood at the bedside of her son, Marquan. She was looking at a shell of what she knew him to be...a gregarious, loving young boy. At 12 years old, the second-youngest of his five siblings, he holds the household together, and lights up every room he walks into.
The boy in the ICU bed was a far stretch from that description. “The whole time we were there, he just kept saying, ‘don’t worry mommy, God has me,’ said Lucille, “That’s all he would say.”
A Negative COVID Test with Severe Symptoms
The COVID-19 pandemic flipped everyone’s life upside down, and the Henderson family was no exception. Living at home with his siblings and mother, Marquan isolated as Lucille did everything she could to ensure her family’s safety. “We saw no one. He didn’t go to school, school was virtual for all of his siblings.”
On January 17, 2021, Marquan complained that his head hurt. Then the back of his neck. Over the next two days, his temperature rose. With the fear of COVID on her mind, Lucille decided it was time to take him to the hospital. On January 20, he was admitted to Rochester General Hospital where he tested negative for COVID.
Doctors ran a multitude of tests, including a CAT scan. Marquan showed some swelling around his lymph nodes, which led to concerns of infection. Doctors began to think Marquan was suffering from Kawasaki disease. Kawasaki disease is the most common cause of acquired heart disease in children in developed countries, and has been, in some cases, tied to previous COVID infections
When Marquan’s condition didn’t improve and his fever spiked to 105 degrees, he was transferred to Golisano Children’s Hospital (GCH) on January 23. Doctors at GCH entertained the idea of a Kawasaki disease diagnosis, but felt that he was a little too old to have developed the condition. Pretty quickly after being admitted, however, he developed signs of shock: high heart rate and low blood pressure. “The Pediatric Hospitalists team jumped on this and we immediately involved our Cardiac ICU team to monitor him. He stabilized after that,” said Marquan’s doctor, Joseph Kuebler, M.D., M.B.A., assistant professor in the Department of Pediatrics, Critical Care.
Kuebler gathered a multidisciplinary team who administered steroids, antibiotics, blood pressure medication and intravenous immunoglobulin (IVIG). IVIG is used to treat various autoimmune and inflammatory diseases. Obtained by pooling antibodies from the plasma of healthy donors, IVIG stops the body’s immune system from attacking itself and decreases inflammation.
Despite their efforts, Marquan was still showing persistent signs of shock. Doctors, along with the infectious disease team, diagnosed him with post-COVID Multisystem Inflammatory Syndrome (MIS-C).
MIS-C typically occurs 2-6 weeks after COVID symptom onset. While Marquan tested negative for COVID via a viral PCR test, he did test positive for COVID antibodies, which is a common trend with a MIS-C diagnosis. Approximately 60 percent of patients test positive for antibodies while testing negative for COVID, while only 30-35 percent of these patients are positive for both.
Meanwhile, Marquan’s condition continued to worsen. He began experiencing heart failure, and on January 24, he was intubated and placed on life support.
Faith Over Fear
“I panicked,” said Lucille. “When the doctors told me that my son could die and that I needed to be with my family so that they could comfort me, I just panicked.”
Due to COVID restrictions, no one else was allowed in Marquan’s room. Lucille sat alone, fearing the worst for her son. “As a mother,
sitting by yourself seeing your child in pain is very, very hard.”
Marquan’s doctors reassured his mother that they were doing everything they could. “His doctors were so incredibly open and honest with me.” Lucille reminisces of a moment she holds dear, when one of his nurses locked eyes with her and said, “look at all of these doctors with Marquan,” gesturing to his team at his bedside. “We are doing everything we can, you just need to continue to be strong.”
That one moment gave Lucille faith.
With the infectious disease team involved, doctors continued to use steroids until the next day. When the morning arrived, and Marquan had yet to improve, they decided—in an attempt to think outside the box—to consult with the rheumatology team for additional therapies.
Turning the Corner, Full Speed Ahead
On January 26, the rheumatologists recommended they start using Anakinra to treat the MIS-C diagnosis. Anakinra is an FDA-approved biologic drug that helps decrease inflammation. Man-made through genetic engineering, Anakinra mimics a protein that already occurs naturally in the body.
Within the day, Marquan drastically improved. Both his blood work and vitals stabilized. On January 27, he was taken off of sedation and intubation.
“Quickly after treatment from Anakinra, he was back to his happy-go-lucky self,” said Kuebler. “I’m sure it was a combination of his therapies, but we believe that the Anakinra treatment pushed him over the edge in the best way possible.”
When Marquan woke up on January 27, the first thing he said was, “See, Mommy? I told you God has me,” immediately followed by his need to get on his Zoom classes. Then, he requested to go golfing with his uncle.
The doctors couldn’t believe just how quickly he turned the corner.
“They would come in and cheer with him. Every day they would ask him how he felt and every day he would say he felt great,” said Lucille.
Finally on the Mend
With each day, Marquan continued to get better. While his experience wasn’t pleasant, he told his doctors that he wanted them to use everything they learned from him to help care for other children. “God made it so that I had to go through this to be able to help other families,” he said.
Marquan remained on blood pressure medicine until January 30. He was discharged on February 5, and he finished his last round of steroids on February 14.
“MIS-C is a very scary diagnosis, but it does respond to therapy. This diagnosis is relatively rare, which is great. Less than 25 children over the course of the pandemic have been diagnosed with MIS-C at GCH,” stated Kuebler.
A MIS-C working group was formed at GCH during the Summer of 2020. Led by Lauren Solan, M.D., M.Ed. in pediatric hospital medicine, the group includes representatives from cardiology, critical care, emergency medicine, infectious disease, hematology and rheumatology. It has been instrumental in establishing the clinical practice recommendations for these patients.
“This group is vital for raising awareness of this rare condition,” Kuebler said. “For Marquan’s case, we put in hours and hours of preparation. Again, it’s all about teamwork; being sure we choose the right therapies, the appropriate follow up, etc.”
Marquan made a miraculous and complete recovery. If you were to look at his echocardiogram, or an ultrasound of his heart, there would be no signs of his body ever being under such stress.
“Strong Memorial Hospital and Golisano Children’s Hospital saved my son’s life,” said Lucille.