Loneliness of raising a medically fragile child
What happens when we ask parents with sick (or unvaccinated) kids to stay away
My son saw a doctor 28 times before he turned one year old — roughly once every two weeks. It was miserable but not wholly unexpected. I knew when he started daycare he would get sick; I just didn’t know how much. With every illness came the gut-wrenching reminder that I couldn’t protect him from everything, and equally awful: I knew he would probably infect others, too.
As a public health professional with a decade of infectious disease experience, I knew how to take precautions, but diseases can be passed on before symptoms appear, and you can’t put your kiddo in a bubble — no matter how much you’d like to.
So we passed on play dates for fear those sniffles were the start of something worse. We left parties early or missed them entirely. And we asked some pretty uncomfortable questions: Did you wash your hands? Can we postpone until after his cough clears? Are your kids vaccinated? Are you vaccinated?
Reactions ranged from disappointment to indignance, and it was a lonely and often contentious time for my young family. In my quest to shield my kid from germs — and his germs from other kids — I lost my village for a while.
The impact of this sort of social withdrawal for adults is much more than just being a little lonely. Studies have shown feeling socially isolated may have a negative impact on one’s physical and mental well-being. Most notably, it can elevate stress hormones in your body — something I think we can all agree parents get plenty enough of already. For women in the postpartum period, these effects can be particularly dangerous. Research has shown that new moms who feel isolated from their friends and family are at a higher risk for postpartum depression, a potentially serious mental health condition that affects roughly one in nine women.
But you don’t need research to tell you how awful it can be to lose friends or to fight with family. We parents often need our support system to keep us afloat when we feel overwhelmed or exhausted. Yet at the same time, we are tasked with protecting the health and safety of our kids. When you’ve waited in your pediatrician’s office for the third time that week, it can feel like balancing our duties as parents with our own needs for social connection is an impossible task. For families with medically fragile children, it can be a matter of life or death.
When Amy, a mom in Seattle, found out her daughter, Annabelle, would be born with a birth defect that compromised her heart and lung functions, she knew she would have to take precautions. Newborns are already vulnerable as they work to build their own immune systems, but Annabelle would have an even harder time fighting off an infection. The family instituted a strict policy: Everyone had to get vaccinated against whooping cough and flu, and no one could be around Annabelle if they had been sick recently. While her friends and family were happy to comply, they often ended up cancelling plans out of an abundance of caution.
“I think, when you’re home with a newborn, you really look forward to those occasional meetups with friends or having someone over to visit,” Amy said. “It was hard to feel so isolated during an already isolating time as a new parent.”
For medically vulnerable kids, diseases like the flu can be very dangerous, said Susan Wootton, a pediatric infectious disease specialist and associate professor at the University of Texas McGovern Medical School in Houston.
Not only are young children’s immune systems still developing, but anatomically their little bodies just can’t handle diseases as well as larger kids and adults. With small windpipes and still strengthening diaphragms, they can’t breathe or cough as effectively, and as a result are at higher risk of hospitalization or death.
“You can die from these infections,” Wootton said. But, she continued, “we’re not trained to tell families to keep their babies in a bubble.” Common sense measures, like the ones put out every year by the Centers for Disease Control and Prevention, are a great guide to help keep kids safe — things like getting vaccinated on time and according to the recommended schedule, washing your hands frequently, and staying home and away from kids when you’re sick.
A frequent source of tension among parents is the issue of vaccines. The CDC and American Academy of Pediatrics strongly support vaccination and recommend a childhood immunization schedule that can protect against 16 potentially dangerous diseases, like measles and influenza, as well as seven different types of cancers.
One Michigan mom I spoke to said that some parent friends in her local support system stopped speaking to her after she posted a provaccine article on her Facebook page.
A similar situation occurred in Texas, when a mommy’s group had a falling out after a vaccineopposed member attended an event with an active case of whooping cough and exposed pregnant women and moms of young children to the disease. The experience led some to become more involved with local immunization advocacy organizations like Immunize Texas, where they would befriend other provaccine parents.
Mother after mother told me about friendships ending because of a desire to protect the health of their children.
Karen Ernst hears these stories often in her role as director of the parent-led organization Voices for Vaccines — so much so that the organization put together a guide for families worried about navigating tough conversations with loved ones who oppose vaccines or have concerns about vaccinating.
A frequent source of conflict involves parents wanting family and friends to get vaccinated in anticipation of a new baby and encountering resistance. In those instances, Ernst said there are steps new parents can take to protect the health of their child while still maintaining their relationships.
“You really do have to be firm, especially if it’s during flu season ... but you don’t have to be mean,” Ernst said. “You can be kind and firm.”
For parents concerned about pushback or contention, Ernst recommends recruiting “a champion” to help step in on their behalf in the event the conversation gets heated or the new parents get overwhelmed. Explaining the dangers unvaccinated people pose to the baby is often sufficient to encourage loved ones to get vaccinated and stay away if they might be sick, she said. If friends and family still aren’t willing to comply with parents’ request, concerned parents can always suggest interacting via Skype instead, telling loved ones: “We want to be connected to you. We just don’t want to get sick from you.”
Ultimately, the decision to walk away is a deeply personal one. Becoming a parent complicates adult relationships in myriad ways. Parenting styles can clash; values can differ. Weighing the risks and benefits of staying connected is something every family must do for themselves.
That said, protecting your family’s health doesn’t have to mean closing yourself off to the world. Some balance must be struck between social health and physical health. Or as Ernst put it: “Parents should do everything they can, but they should also live their lives.”