By James Hanlon
Leader Staff Writer
Oxford residents Chris and Kristina Peace share a 24-hour around the clock job for which they have no professional training, state provided PPE or facilities to care for a vulnerable five-year-old patient. They also have to wait along with everyone else in the general population under 65 to get the COVID-19 vaccine.
Their son, Abe, has multiple medical conditions, including hypoplastic left heart syndrome, that make him especially vulnerable to diseases.
“Michigan’s vaccine priority plan lumps parents like us in with any other healthy American, yet we perform nursing duties on a constant basis,” Chris said. “To put this all in perspective, a single mother who is caring for her child with leukemia is considered the same as a healthy adult.”
They are trying to get the state of Michigan to recognize and reprioritize unpaid caregivers, particularly parents of children with high risk of COVID-19 complications, to receive a COVID-19 vaccination.
Right now, healthcare workers, professional caregivers, first responders, prioritized frontline workers like teachers, as well as anyone over the age of 65 are eligible to receive the vaccine. Next in line are those in priority Phase 1B, Group C, which includes “other frontline essential workers” such as food service, grocery store workers, or public transit. Phase 1C includes individuals age 16 years or older at high risk of severe illness due to COVID-19. Finally, Phase 2 includes all other individuals age 16 or older.
Since the vaccine is not currently recommended for anyone under the age of 16, that makes children with medical complexities especially vulnerable.
As of last week, a healthy 20-something restaurant server in Detroit who doesn’t have children or high risk people in their lives can get the vaccine. “Parents of kids like ours see a horrible inequity there, or a lack of recognition,” Chris said.
Another Oxford resident, Katie Hill, has a seven-year-old son with cystic fibrosis, which is a progressive genetic lung disease that causes persistent lung infections and limits the ability to breathe over time. Often patients end up needing lung transplants. “With Covid, you can definitely understand why with a lung disease we are taking everything very seriously,” Hill said.
Besides a couple doctor appointments in Ann Arbor, they haven’t been anywhere since last March. Gratefully, she has a job that allows her to work from home and her son attends Oxford Virtual Academy.
It is frustrating to be left out of the vaccine priority. “We shouldn’t be continually asked to sacrifice so much more than the general population.”
For the Hills, things won’t change much until vaccines are available for children, but for parents who have to work outside the home, it is vital. And the peace of mind that would come with protection “would mean the world right now.”
Christina Schuetz, who lives in Clarkston, became an advocate for medically complex families after her daughter, Sylvia, passed away at 10 months old. Like Abe Peace, Sylvia had a congenital heart disease. She was in the hospital on life-support when she got an infection that ultimately overworked her body.
“It’s hard to think about that infection,” Schuetz said. “If someone maybe would have just washed their hands, or however that infection got in there, it’s hard to think about. This is preventable. There are so many things that medically complex kids can’t prevent, but this is possibly one of those things.”
Scheutz, who sits on the advocacy board for the Children’s Heart Foundation, pointed out that children who are chronically ill are not only more at-risk if they get the virus, they are also more exposed, by no fault of their own, because they have to go to frequent medical appointments. “Hopefully those medical professionals have been vaccinated, but that doesn’t mean everyone else in the waiting room, or who has been in the exam room before has been vaccinated.”
For medically complex families to be overlooked is discouraging because they “already feel like a forgotten part of the population, so to have something like this that actually affects them more so than the average person in the population, for them to be on the backburner is unacceptable, frankly. It shouldn’t be as hard as it is for medically complex families to get help. Especially extremely easy things like putting them in the correct classification for a vaccine.”
“His whole life we’ve had to fight for things we shouldn’t have to,” Kristina Peace said of her son. With hypoplastic left heart syndrome, Abe is missing the left ventricle of his heart. The course of treatment is to keep the child as healthy as possible until he is old enough to get a heart transplant form an adult donor because hearts of young children his age are not readily available, and it avoids the complication of needing the heart to grow with his body.
“About three years ago, my son actually got a coronavirus,” Chris said. “Obviously not the one we have now, one of the more common ones, but it put him in the hospital for two months. And that ended with a heart surgery, a brain surgery, a bunch of new diagnoses that weren’t there before. So common diseases that can be prevented with vaccines, they can really do a number on children like him. And sometimes that number can be, ‘your number is up.’”
The last year has been somewhat normal for the family. “For us, during the past five years that Abe has been alive, during cold and flu season we essentially do what everyone else is crying about having to do for the past year. So we’re not rookies to this, you know staying away from big crowds, making sure that people who are sick don’t enter our home and we don’t go around sick people. . .These are things that we’ve had to deal with before COVID-19.”
Chris was not seeing much advocacy happening for this issue, so he tried contacting the governor’s office himself, but he has been unable to get past gatekeepers. “I just can’t imagine that I would have a conversation with the governor where she wouldn’t absolutely agree with us. She has the power to make this protection a reality.” At least two other states, California and Illinois, have made exceptions of this kind.
Unable to contact the governor directly, he started a petition on Change.org: “Governor Whitmer – Prioritize Vulnerable Children in Michigan!” It had 600 signatures as of Sunday.
“A lot of people will deflect that there is not enough vaccine to go around as is, and I would agree with them,” Chris said. “But it’s important that we acknowledge that there are two different issues here. There is the availability of the vaccine and then there is the classification system. The availability of the vaccine is nothing that I can help. The classification is really the crux of the issue for us.”
He acknowledges that there are priorities above his situation and that people like healthcare workers should absolutely go first. “I just think that to put us in a no-priority category is a disservice to our entire community.”
Katie Hill is glad essential workers and senior citizens are able to get their vaccines, “but there are a whole host of people that are valuable members of our society and they are being asked to sit out.”
Abe will be starting kindergarten in the fall. If he attends in-person it will be important for all the adults around him to be vaccinated. “We want people to be thinking about the fact that a lot of medically complex children will be returning to school next year,” Kristina said.