Fact: Preemies in the NICU must fight simply to survive, sometimes for months, so milestones fall by the wayside. Children born prematurely are more likely to experience medical, learning and developmental concerns than their full-term peers. And life after the NICU, for months, years, or a lifetime, is often just as rough a ride because the round the clock medical support is no longer there.
Another fact: You can’t always identify a preemie by looking at them.
Surprised? Prematurity, like so many other challenges children with special needs and their parents face, is often invisible. Of course, sometimes the effects of prematurity on families are obvious. A toddler in leg braces. A father who can change a feeding tube with his eyes closed. Thick glasses on a three year old. A mother who gave up a career because her daughter needed a level of care that daycare couldn’t provide. More often, however, the lasting impact of prematurity on children and families simply isn’t obvious at a glance.
There are those who might consider the invisibility of many of the effects of prematurity a blessing – children who look in every way average have one less burden to bear. But parents of preemies know that the invisible special needs can become the root of misunderstandings that can strain and even irrevocably damage relationships.
In the hospital, prematurity is bluntly obvious to a parent’s friends, relatives, coworkers, and acquaintances. They may never have seen a preemie in person, but they understand that the reality of the NICU is a difficult one and that sensitivity is called for. After parents of preemies make the transition home, particularly if they don’t come home with oxygen or apnea monitors or other medical equipment, that sensitivity can evaporate.
Strangers can’t see anxiety disorders or sensory issues. Strangers may not understand why a parent won’t shake hands or asks that they do not touch the baby. They may interpret behavioral issues, autism spectrum disorders, and weight and growth issues as “bad parenting.” What can be surprising is that those who actually know parents of preemies are often similarly insensitive. When a preemie looks big and healthy, family and friends may assume that parents are being overprotective when they bow out of social events to avoid germs. And they, too, may interpret common effects of prematurity as being somehow the fault of parents.
Prematurity, for parents, can be severely isolating, and these types of misunderstandings are a big part of the reason why. As children coping with the effects of prematurity learn to navigate the world in their own way, their moms and dads must cope with the judgments of those who only see a beautiful baby or child. They don’t see a mother’s exhaustion or a father’s fear. They don’t see the occupational therapy sessions or the specialist visits. They don’t see the surgical scars or lifetime diagnoses. And they don’t see that those parents need help and above all, need sympathy.
Sometimes, combating the misunderstandings that result when a health issue can’t be seen is as easy as sharing the reality with the people around you. If you know the parent of a preemie or someone who knows a family coping with prematurity, please share Parents of Preemies Day with them. With your help, we can open people’s eyes to the invisible effects of prematurity.