A Minnesota woman whose daughter has been hospitalized since March is urging people to get vaccinated and wear masks as the delta variant spreads and children return to class.
Lani Bauer’s 8-year-old daughter, Avella, has been diagnosed with Acute Disseminated Encephalomyelitis (ADEM), a disease that developed after testing positive for Covid-19.
In early March, Avella had a mild fever that her mother kept her from going to school for a few days. The fever flared up later in the week and she was able to return to school but was acting strangely at the end of the day.
“I got a phone call from her after school telling me that I had to come and pick her up because she was not herself and she was sleeping in one of their small rooms,” said Bauer said.
That Saturday, Bauer woke up to find her daughter unconscious, in which case she rushed her to the hospital. After performing several tests, she was diagnosed with ADEM and tested positive for Covid. The girl is now completely paralyzed and has been hospitalized ever since.
ADEM is an inflammation of the brain and spinal cord that damages myelin, the protective layer that covers nerve cells. Michael Pitt, Avella’s pediatrician at M Health Fairview University of Minnesota Masonic Children’s Hospital, said the immune system disorder is often triggered by viral infections. In Avella’s case, Covid-19 was the only virus she tested positive for, Pitt said.
“We are seeing an extreme which is very, very rare, but it is definitely something that we would like to avoid,” he said.
There have been dozens of case reports since the pandemic began associating Covid-19 as a trigger for ADEM, Pitt said. Most children who receive ADEM regain most of their function within four to six months. But Avella is an exception – she has had a rare form of ADEM called AHEM (acute hemorrhagic encephalomyelitis), where the damage is so severe that she may not recover.
Avella, described by the family as athletic, intelligent and funny, is now unable to walk or speak and must be tube fed.
Bauer remembers that his teacher had to keep changing Avella’s seat because she was able to get even quiet children to talk.
“Before this incident, she was a very healthy child, never as much as she had vomited,” Bauer said. She adds that “Avella was learning chess just enough that she could teach her boyfriends how to play. “
Since being diagnosed with ADEM, Avella has had the front part of her skull removed due to severe brain swelling.
Although progress is slow, Lani said every little victory is a victory and there have been some small steps towards Avella’s recovery.
Since arriving at the hospital, Avella has been unable to see due to brain damage caused by ADEM. However, last week Avella’s doctors said they believe she still has some type of vision, although the extent is unknown.
Pitt said while complications such as ADEM are on his radar as a doctor, he said most families are unaware of her.
“There are rare and serious side effects to things that we can prevent, if we take them seriously,” he said.
Last year, Pitt said, it was the children who made the sacrifices during the pandemic, and now is the time for adults to step up.
“They were homeschooled, they were locked out to protect vulnerable people. Now it is our children who are vulnerable. And we ask adults to do the same for us, ”he said.
Bauer wants to share his daughter’s story in the hopes of preventing this from happening to someone else.
“If getting the vaccine and wearing your mask is one more step in preventing this from happening to another child, that’s what I want to stress, and I want to insist on making sure you are wearing your mask,” she declared.