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For Andrea Pietrowsky’s 5-year-old daughter Louisa Pietrowsky, the coronavirus is a mortal enemy.
Louisa has underlying heart and lung conditions, which meant she had to undergo several open-heart surgeries, the first when she was only nine days old. She needed a ventilator to breathe during the first few months of her life.
Many experts say that most people who contract the coronavirus will only experience mild symptoms, and children are largely safe from developing severe infection. But for many children with underlying conditions, that’s not true, Pietrowsky says.
“There are a lot of families who have kids with some complex conditions and disabilities, and [being infected with the coronavirus] would be detrimental to their well-being and even their life,” she says.
Pietrowsky’s husband is a dietician at hospital in Detroit, Michigan. In order to protect their child from COVID-19 and keep working, he had to move to the hospital full time. Now Pietrowsky is on her own homeschooling and caring for two children.
Pietrowsky says she also had to cancel all of Louisa’s routine medical care in order to keep her safe.
“I can't say that she's really thriving at this point, but we're safe and we're well,” she says.
On Louisa’s underlying medical conditions
“Louisa was born five and half years ago with a known condition. It's a very severe heart condition, and she's had several open-heart surgeries to modify how her heart works. So our family has done a lot of things that we never would have imagined we'd be in a position to do. And one of those things was having our newborn baby stay from birth to seven months old and in a complex unit at [the University of Michigan hospital] for seven months. So the rewards are great.
“There were times after her first heart surgery, she was just nine days old, where hospital staff in the [intensive care unit], they had to take precautions. She received a tracheostomy, which is an artificial airway, at two months old. This helped make it possible for her to at some point be removed from a ventilator, and live with us at home on a home ventilator. So there was a lot that came with that in terms of having sanitary protocol where we always made sure our hands were washed. We wouldn't come into her room if we were sick. As she's grown older and bigger, she's become more resilient. She had her tracheostomy removed at age three. And with this virus, COVID-19, we've gone right back into isolation that we've done before.”
On the challenges right now for parents in her position
“I tell myself we're just going to take this one week at a time because it's been really hard taking care of two kids, one with some complex medical needs. She's on several medications. She's prone to injury if I'm not carefully monitoring her.
“I know I'm not the only parent in this position, but it puts me in so much despair to think that there are other families like ours who do not have these options. They might be on the frontlines, whether it's working in a business capacity that supports medical workers or it's the grocery store. They can't all work remotely, and I want to bring that perspective to people. Our situation's really, I know it sounds intense, but it's not the worst-case scenario. To me, the worst-case scenario would be if Louisa were in the hospital. And it could only be me by her side or maybe not even me.”
This segment aired on April 1, 2020.
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