Picture the following scenario:
It’s 11 o’clock on a Saturday morning and you and your family were planning a fun outing at the nearby museum. When your toddler wakes up from her nap, however, you realize that she has a runny nose, is coughing a little, feels a bit warm, and overall, seems to be a little more cranky than usual. You flip through possibilities in your head: Is she coming down with something? Could she be sick? What if it’s nothing? What if it’s something?
Your older children have been looking forward to the trip all week and you are forced to make a difficult decision: either take the risk that your daughter may be contagious with a slight cold and still go or cancel your plans and disappoint the rest of the family.
What do you do?
Well, if you’re anything like me, you might consider that runny noses and coughs are an inevitable part of raising kids and carry on with your fun family day, hoping for the best. However, if you’re the parent of an immunocompromised child, you may just think twice before downplaying the impact of that “little cold” as no big deal.
Courtney Hayes, 34, of Arizona, is one such parent.
Her son, Jude, was born with a heart defect called Truncus Arteriosus as well 22q.11 deletion syndrome, a genetic disorder. Due to his medical conditions, Jude’s immune system does not work properly, nor does his heart — which means that not only is he more susceptible to getting sick, but when he does get sick, even something like a common cold could be fatal.
In an eye-opening post on her Facebook page, Hayes pleaded with other parents and caregivers to realize the potentially life-altering impact that taking a sick child out in public can have on immunocompromised children.
“No cold is ‘just a cold’ for a [medically] complex child,” she wrote. “It stresses their heart, their respiratory system … we are always just one bad moment away from a long hospitalization.”
In her post, she explained the constant balance of trying to simply live life like a “normal” family with the constant fear that even a small cold could kill her son. She described how she and her husband, Josh, work very hard to balance protecting their son while enriching his life with experiences outside of their home, such as a local children’s museum they strategically visited before flu and cold season began.
“We were those crazy parents washing his hands every 5 minutes, wiping down everything he touched, not letting him get too close to other children,” she wrote. “[And] that’s when she walked up.”
Hayes went on to describe how a young girl who appeared to be sick with a mucousy, thick cough came up to her son and sneezed right in his face. Although Hayes, who is now pregnant with their second child, fully admits that it’s quite possible Jude got sick from another source, days later, he developed the same cough.
The frustrated mother turned to her Facebook account to describe how an illness, which might barely impact a toddler with a fully-functioning immune system, has severely affected her son.
“For the past 7 nights, I’ve been holding my baby as he screams, chokes, coughs and vomits up mucous all night long, and all I can think about is that girl and wonder why her parents chose to take her out when she was clearly ill,” she wrote. “I regret sacrificing Jude’s health for a few hours of fun, but doesn’t he deserve fun? Doesn’t every child deserve fun?”
Jude has been through countless medical tests, procedures, and even open-heart surgery at only four days old. He will also likely undergo more surgeries in the future. But it’s because of his medical challenges, not in spite of them, that Hayes is dedicated to ensuring that her son lives as full of a life of as possible. Yet, it’s never without the risk that he could become sick.
“He’s fought to be alive and I want him to LIVE,” Hayes says. “With a medically complex child, it is a fine balance between trying to help them live as normally as possible while also trying to protect them and in reality, also trying to keep them alive.”
Hayes also notes the unfortunate reality that some families literally cannot afford for their children to be sick. Without a system that fully supports working parents and families, some parents are forced to continue to drop their children off at daycare, or send them to school even though they’re ill, making the issue a difficult one to navigate.
Hayes explains that her post is not meant to shame working parents or insist that everyone stay home at all times; instead, she says that she hopes to urge parents of children with fully-functioning immune systems reconsider any optional activities when their kids are sick, even for a day or two.
“I’m trying to spread awareness for my son and all of my son’s dear friends who are fighting to live just as hard as he is,” Hayes wrote. “Wait a few more days. The museum isn’t going anywhere. I promise you, all of us with special fighters will be on our hands and knees thanking you for being so considerate. There is no way we can protect our children from everything, but the littlest decisions can make all the difference in the world. It truly could save a life.”