November is Prematurity Awareness Month.
I think the main thing we need to be aware of about prematurity is that it sucks. It really sucks.
Prematurity takes what should be a normal infancy and turns it into a journey into medical hell. It robs both parent and child of a normal infancy. Instead of filling baby books with milestones like “smiled for the first time” you make note of milestones like “weaned off ventilator.” You and your baby are robbed of quiet, private moments. Instead, the two of you spend those moments in a room filled with strangers, doctors, nurses, monitors, alarms and machinery you didn’t even know existed when you filling out your baby registry. People tell you well intentioned, yet terribly stupid things, like “things happen for a reason,” “God doesn’t give you more than you can bear,” “at least you never got stretch marks since the baby was born so early” or “you’re lucky you get to sleep at night since the baby is in the hospital.”
You wake up day after day wondering if this is the last day you will see your child.
Prematurity financially devastates families. Contrary to popular belief, there is no insurance fairy that pays the tens of thousands of dollars of co-pays or the endless “uncovered” things like speech therapy or adaptive equipment. Even “good” insurance isn’t “good enough” to cover prematurity. Instead of paying for a babysitter, you have to pay for a nurse to watch your child, instead of daycare, you have to hire a nanny, instead of working full time you have to take a leave or work part time because of the sheer number of medical appointments your child will have after leaving the NICU.
Prematurity is isolating, physically and emotionally. Because of the baby’s fragile immune system, you have to limit to whom and what the baby is exposed. Of course friends and family assume you are simply nuts, because, as they will all tell you over and over, everyone needs to be exposed to germs. Actually not. It is emotionally isolating because no one, other than the other shipmates on the SS Prematurity have even a clue as to what it is like to take your infant to a minimum of one doctor visit every week, not have a single day for just you and your baby because three therapists show up everyday, on schedules that are convenient to them not you and your baby.
Prematurity devastates families emotionally (see all of the above).
Prematurity sucks even more for single mothers and their babies. There is no partner to act as a sounding board when you are making life altering decisions like whether to resuscitate your child, sign a DNR or decide whether to give your child a virtually experimental, yet potentially life saving drug. Bringing home a premature baby, particularly one with ongoing medical needs, can be a daunting task for single mother. Daycare settings are often inappropriate for health reasons, yet a nanny may not be financially feasible and few of us have the luxury of taking a year off from work.
So what can we all do to help make this suck less?
Well, you can donate money to various charities in the hope that some of the research they fund might end prematurity. Or you can do something a bit closer to home and more personal. Call your local NICU or its support group and ask what you can do to make this whole thing suck less. Small things can make prematurity suck less. For example, my mother, my aunt and I make blankets and hats for the babies. There are dozens and dozens of babies that have worn my aunt’s tiny “wee caps” and many who have been warmed by one of my mom’s blankets and even though my blankets are far from “perfect” they are made with love. Some people make isolette covers, some people donate disposable cameras for moms to leave at the baby’s bedside (yes we do take photos of our babies in the NICU), other folks donate gifts cards for coffee or gasoline to be given to those in need in the NICU. Others donate story books to the NICU (yes we read to our babies the same as you would at home). If you are feeling really generous, ask if you can send over bagels and coffee for a Sunday brunch for the moms and nurses (they get hungry too). Not all moms in the NICU can afford NICU clothes for their baby, so think about donating some NICU shirts or preemie clothes to your local NICU. Have your local SMC group contact your local NICU support group or hospital’s Family Advisory Council and offer to spend time with a single mom in the NICU, or help out a single mom whose baby has recently been discharge. You often hear the saying “it takes a village to raise a child.” Well what better way for that village to help, than to help the mother of a premature baby or child with medical needs.
Even if you can’t prevent premature births, you can make prematurity suck less for the mothers and the babies who are in the NICU right in your hometown.
So this November, let’s see if we can all make prematurity suck less.
To discuss this and other SMC topics, join SMC and take part in our discussions on our lively online 24/7 Forum and at local chapter meetings.