With schools closing, events being canceled and new information about the coronavirus circulating through news and social media, it’s only natural for parents to feel anxious about protecting their children from this unfamiliar disease. But for parents of premature babies and other medically fragile children, isolation and “social distancing” is all too familiar.
When our son was born at 23-weeks gestation, my husband and I were thrust into a medical world that taught us more than we ever wanted to know about germs and the human body. But when we were discharged from the NICU four months later, we found one of the challenges of caring for our baby at home was educating the people around us about his vulnerability to illness.
The preemie journey doesn’t end when the baby comes home.
It’s easy to assume a preemie discharged from the NICU is now a healthy full-term baby, but that’s not the case at all. In reality, NICU discharge means the baby can now be cared for at home, but this care often includes many of the trappings of hospital life.
Our son came home with oxygen tanks, a nasal cannula, and a pulse oximeter (a machine to monitor the levels of oxygen in his blood), as well as breathing treatments and five medications. We had a nurse come to our home every day to help with his care and monitor his health. It was December—right in the middle of cold and flu season—so we were also under strict orders to keep our son out of crowds, limit visitors and maintain many of the same hygiene and disinfecting practices we’d had to follow in the NICU.
After months of watching our son struggle to breathe in the NICU, we lived in constant fear that one of us would bring home an illness that would land him back in the hospital on a ventilator.
Preemie bodies don’t work like the bodies of full-term babies. A very common piece of advice parents hear is, “You need to expose them to germs—that’s how they build up their immune systems!” And while there is some truth in this advice, it’s actually a lot more nuanced than that.
Preemies start at a disadvantage in terms of immunity because they miss out on some—or in our case, all—of the third trimester of pregnancy, which is when a mother passes her antibodies to her unborn child. There’s also a misconception that premature babies are simply “finishing their gestation outside the womb,” but in actuality, a baby’s development proceeds very differently after they are born. So their organs are likely not functioning the same way they would be if the baby had been born on time.
Particularly, lung development is stunted by premature birth, and this can be exacerbated by ventilators which cause damage to delicate lung tissue. It can take years for children who were born prematurely to outgrow these shortcomings in immunity and lung development, depending on how early they were born.
Our doctors have told us to expect our 23-weeker to be vulnerable until he’s at least 5 years old, and that’s if we can protect him from dangerous respiratory illnesses. So even though he’s 3 years old now, no longer our tiny baby, we’ve still been advised to keep him isolated while COVID-19 is spreading, because his body may not be strong enough to fight it off if he does get infected by it.
This isn’t the life we imagined for our family.
When we first got pregnant, we pictured ourselves enjoying the fun parts of family life: visits from friends and family, outings with the baby strapped to our chest, family gatherings where our kiddo would join the already bustling crew of munchkins running around. But that’s not exactly how it panned out for us.
We still feel the pain of that loss, even three years later. So while it may be disappointing for you when you can’t meet the new baby in your family or friend’s life or when they cancel plans and skip events because they’re nervous about germs going around, please know—they’re not overreacting and they’re not excluding you because they don’t love you. They’re just trying to protect their child, and trust me, no one is sadder than the parents this is necessary.
And if you are the mother of a preemie or medically fragile child trying to navigate this scary new world where the coronavirus exists—you are not alone. Millions of Americans are with you, virtually, at home, too.