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‘I cherish the almost 13 years I got with her:’ local mom reflects on child’s battle with myocarditis

Posted at 6:11 AM, Feb 10, 2021
and last updated 2021-02-10 06:11:39-05

MICHIGAN — When Rachel Klaus’ 12-year-old daughter Sarah was complaining about her neck hurting on Thanksgiving 2019, she immediately took her to the emergency room to get it checked out. The nurse practitioner examined her and said it was a virus and that she should rest up at home.

However, Sarah’s health declined when she began coughing that night.

“By the next day she seemed to be kind of having a harder time breathing and I thought ‘oh no, is this turning into something respiratory,” Klaus recalled during a Zoom interview last week. “By Saturday, which was November 30, she was struggling to breathe and I looked at her and she looked kind of gray and her fingernails looked kind of blue and her lips also looked blue. I thought she’s not getting enough oxygen.”

They immediately rushed her to Beaumont Hospital in Royal Oak, near where they lived. Doctors treated her and suspected she had myocarditis, an inflammatory heart disease. Saturday afternoon, she was transferred to C.S. Motts Children’s Hospital at the University of Michigan Ann Arbor. She was treated in the cardiac pediatric intensive care unit and her health began to improve by Sunday. So, Sarah’s father stayed with her overnight while Klaus headed home to tend to their other kids.

However, within hours, Klaus rushed back after Sarah began coding.

“As the day wore on and through the night, it became more and more evident that her body was shutting down,” Klaus recalled. “By the next morning, she was in total renal failure. Her liver was failing. Her lungs, she was practically bleeding straight into her lungs.”

Sarah’s heart was failing too and she had been in code — or cardiac arrest — for an hour earlier. They were also told that she may have suffered extensive brain damage.

Klaus said she and her husband knew then that Sarah wasn’t going to make it. So, they made the painful decision to tell her they loved her one final time.

“Her heart was just so far damaged from the myocarditis that she wasn’t going to be able to function on her own,” Klaus said with tears in her eyes. “So, December 3, 2019 we had to say goodbye to our 12-year-old daughter and just six weeks before her 13th birthday.”

Klaus was devastated.

As difficult as life has been without her, the people at the Myocarditis Foundation have been comforting for Klaus. The nonprofit is dedicated to supporting families that have been touched by the disease. They also fund research to learn more about it. According to their website, there were over 3,000,000 cases of myocarditis reported last year. They don't know how many stem from COVID but they say the disease can stem from any virus.

“[Founder] Dr. Leslie Cooper had an interview with a radio station. He believes that a small percentage of people who get the COVID virus will develop myocarditis,” said Executive Director Genevieve Rumore during a Zoom interview last week, while reading the interview. “If you look at cardiac MRI studies of young athletes who have had COVID-19 the rate of abnormalities which could be myocarditis is between 3 and 15 percent.”

University of Florida basketball player Keyontae Johnson was a part of that percentage group. According to the Associated Press, Johnson collapsed on the floor five minutes into a game vs. Florida State in December. He was later diagnosed with myocarditis after having suffered COVID over the summer.

Klaus said she doesn’t know if Sarah had COVID. There were no known cases of it at the time in the United States. However her daughter was athletic and myocarditis is what caused her death.

“The problem is you don’t know what it is doing inside your body. And, it’s scary. When your heart gets sick it’s not like when you have a broken bone, you can cast it for 6-8 weeks and it doesn’t move and it can heal,” Rumore said. “You can’t put your heart in a cast. It has to work all the time.”

Rumore said the foundation, doctors and specialists are recommending that if anyone’s battled COVID and been diagnosed with myocarditis, to rest for at least three months.

Klaus added that parents may want to consider not allowing their kids to resume playing sports this season.

“I know that this is a very rough time but I also implore you to think about how much harder it would be if you lost your kid to something that could’ve been prevented,” Klaus said. “We don’t know if Sarah had COVID. The time frame in which she got sick and past away in, it’s kind of iffy. It was just before COVID really took hold here in the States. But regardless it’s a virus.”

Klaus now spends her time keeping her daughter’s memory alive through randoms acts of kindness. Since her passing, they’ve bought strangers cups of coffee at Starbucks in Sarah’s memory and purchased Christmas trees as surprises for people.

“She loved things like that,” Klaus said. “She was well beyond her almost 13 years on this earth in just loving and caring for people and having compassion for her friends and for others.”

Klaus said Sarah was a huge supporter of the Black Lives Matter movement and became a safe haven for friends in the LGBTQ+ community.

Now all Klaus has is memories of her. So, she’s imploring all parents to think twice about letting their children play sports, especially if they’ve battle COVID.

“I don’t want to see another mom have to bury their child,” Klaus said. “I cherish those almost 13 years that I got with her but I should’ve had so many more.”