14-year-old Tara Sweet was born with a rare genetic disorder. When she contracted COVID-19, it caused more concern for her than for most teenagers. (Taylor Ballek | Spectrum Health Beat)
Tara receives monthly injections to prevent inflammation. The drug suppresses her immune system and this increases her risk of complications from COVID-19. (Taylor Ballek | Spectrum Health Beat)
With advice from her medical team, Tara and her parents turned to a new drug in the hopes that it would help her fight the virus. (Taylor Ballek | Spectrum Health Beat)
Tara received an infusion of monoclonal antibodies, which deliver artificial proteins that act like human antibodies to kill the virus. (Taylor Ballek | Spectrum Health Beat)
At 18 months, doctors determined that Tara had Muckle-Wells syndrome, an autoinflammatory disease caused by a genetic mutation. It causes periodic flare-ups of rashes, fever, and joint pain. (Taylor Ballek | Spectrum Health Beat)
Left untreated, the syndrome could damage Tara’s organs, said her mother, Kristy Sweet. (Taylor Ballek | Spectrum Health Beat)
Doctors have said some children lose their sight and hearing by the time they reach adolescence, but Tara is doing well and has not experienced any of these symptoms. (Taylor Ballek | Spectrum Health Beat)
When Tara tested positive for COVID-19, she experienced shortness of breath. She is considered to be at high risk and infusion of monoclonal antibodies seemed to be a good option for her. (Courtesy photo by Tara Sweet)
Tara plays volleyball, soccer and basketball. To play sports, she took a weekly COVID-19 test. (Taylor Ballek | Spectrum Health Beat)
When Tara Sweet contracted COVID-19, the disease raised more concerns than most teens.
Born with a rare genetic disease, Tara receives monthly injections to prevent inflammation.
The drug suppresses her immune system, which increases her risk of complications from COVID-19.
On the advice of her medical team, 14-year-old Tara and her parents turned to a new drug in hopes it would help her fight the virus.
She received an infusion of monoclonal antibodies, which deliver artificial proteins that act like human antibodies to kill the virus.
Tara is one of a handful of pediatric patients who have received treatment at Spectrum health.
She is sharing her story to help raise awareness of the treatment, which is available for patients 12 years of age and older who have conditions that put them at risk of severe COVID-19.
“It has helped me a lot to recover,” she said.
Tara was a newborn baby, barely 12 hours old, when she developed a rash. Over the next 18 months, her parents took her to various specialists as the rash came and went.
At the age of 18 months, doctors determined that she suffered from Muckle-Wells syndrome, an autoinflammatory disease caused by a genetic mutation. It causes periodic flare-ups of rashes, fever, and joint pain.
Left untreated, the syndrome could damage Tara’s organs, said her mother, Kristy Sweet. Doctors have said that some children lose their sight and hearing by the time they reach adolescence.
Thanks to a National Institutes of Health study, Tara started taking a drug that aims to control inflammation.
“She is doing very well,” said Kristy, noting that Tara had no problems with her ears, eyes or movements.
She runs school and activities as an eighth grade student at Fruitport Middle School.
“I love spending time with my family, going to church and going out with friends,” she said.
Sometimes she joins her two sisters to lead the congregation by singing.
She also plays volleyball, soccer and basketball.
Routine COVID-19 screening
To play sports, she took a weekly COVID-19 test. And in April, a test came back positive.
“I was shocked because I had no symptoms,” Tara said.
The next day, however, the nasal congestion started. A day later, she lost her sense of smell.
“A day or two after that I realized I was getting out of breath every time I went up the stairs,” Tara said.
Tara had a date with Elizabeth Kessler, MD, the pediatric rheumatologist at Spectrum Health Children’s Hospital Helen DeVos who oversees her treatment for Muckle-Wells syndrome.
When Kristy discussed Tara’s COVID-19 disease, Dr Kessler told her about monoclonal antibody therapy.
The therapy, which has received emergency use clearance from the Food and Drug Administration, is given as a single infusion at the COVID-19 Infusion Clinic at Spectrum Health Blodgett Hospital.
“The goal of monoclonal antibody therapy is to prevent patients from becoming sicker and needing to be hospitalized,” said Jodi Meinke, IP, the director of Advanced Practice Provider Services for Spectrum Health who oversees the Monoclonal Antibody Clinic
Nearly 900 patients have received the therapy at Spectrum Health since it became available in December.
This number includes 11 pediatric patients.
To be eligible for treatment, Meinke said patients must meet certain criteria.
Pediatric patients should:
- Be 12 years of age or older
- Weigh at least 88 pounds
- Test positive for COVID-19
- Have a symptom of COVID-19 – and they must be within the first 10 days of symptoms.
They must also have a medical condition that puts them at increased risk of serious illness from COVID-19.
The list includes, but is not limited to, the following conditions:
- Liver, cardiovascular, renal disease
- Arterial hypertension
- Asthma or lung disease
- Neurodevelopmental disorders
- A high level of immune suppression
- Stroke, cerebrovascular disease, seizures or other neurological disorder
- Substance use disorder
- Obesity – for patients aged 12 to 17, i.e. body mass index equal to or greater than 85e percentile for their age
- Other conditions and medical factors, including race and ethnicity, that could put a patient at high risk of progressing to severe COVID-19.
It’s a long list that covers a wide range of conditions, and parents might find it difficult to determine if their child meets the criteria, Meinke said.
That’s why she encourages parents to call the infusion clinic at 616.391.0351 if they have any questions. The medical team will provide information and advice.
She also urged parents to get children tested for COVID-19 if they show symptoms of the disease and to contact the infusion clinic as soon as possible.
“The sooner we can treat patients during their illness, the more successful we are in preventing the progression of severe COVID-19 disease requiring hospitalization,” she said.
The spring spike in COVID-19 cases included a number of pediatric cases, and some of the children were in need of extremely advanced life-saving assistance, said Rosemary Olivero, MD, specialist in pediatric infectious diseases.
“People have in their brains that children and teens don’t get seriously ill from COVID-19, but we’ve seen a lot more pediatric hospitalizations,” she said.
She encouraged parents to consider monoclonal antibody therapy for children belonging to one of the high risk groups.
“Most people who get the infusion start to feel better after about a day, which is much faster than the majority of people with this condition,” said Dr Olivero.
Tara’s father, Steve Sweet, brought her to the clinic for his monoclonal antibody infusion.
“It was pretty quick,” she says. “I just sat on a chair and watched ‘Cloudy with a Chance of Meatballs’.”
After the infusion, she waited an hour, drinking hot chocolate and eating graham crackers, while the medical team monitored her.
Tara did not feel any difference during or immediately after the infusion.
About a day and a half later, she started to feel better.
And by dinner time, she realized she could smell the chicken cooking – her sense of smell had returned.
In a few days, she was no longer short of breath when she climbed the stairs.
Now recovered, Tara has returned to school and sports. And she’s glad she got the infusion.
“I think if I hadn’t done that I still would have continued to have symptoms and they would have been worse,” she said. “Once I got the infusion early enough, it helped my body get back to normal and recover.”
Tara’s willingness to share her story does not surprise her mother.
“I think God is using Tara as a testimony in different ways,” she said. “Maybe it will help other kids.”