Prematurity Awareness Month (Part 1)

You spent so many hours together, just imagining what your baby would look like. You never ever expected to see anything like this.

Even though we’ve only been planning for a year or so, it feels like I’ve waited my whole life for this…

We can’t stop the labor, she’s too far along, too fast…

…and we’re going to have everything ready, so all we have to do is take care of…

…weeks early, the development is…

…don’t even care if it’s a boy or a girl, as long as our child is healthy…

…has the counselor come yet to explain what this might mean?

…it’ll all feel worth it, once my baby is in my arms…

…yes, incubator prepped in NICU #2…

…and we’re looking at our child together, for the first time…OUR child, this miracle…

…A nurse will let you know when you can see him after we’ve transferred…

…a perfect moment, just breathing him in…

…needs a CPAP and steroids, the lungs…

…going to be beautiful, so beautiful…

…shift that monitor, we need to run a…

“Congratulations,” they’ll say, “It’s a…”

…There are other…Complications…it appears that…

…And no matter what happens over the years, we’ll be together, and go through it as a family…

…We’re doing everything we can, but the prognosis is…

…my baby…my baby…my baby…my baby…my baby…my baby…

…You cannot expect this baby to survive.

Yesterday, November 17th, was the National Health Observance of Prematurity Awareness Day, although The March of Dimes has made the entire month of November Prematurity Awareness Month. Though the Empire State Building glowed purple on the 13th, the most support seemed to shine, world-wide, yesterday, as it was also more unofficially dubbed “Blog for Prematurity Day”.  To be perfectly honest, I intended to get this article published then.  Why didn’t I?  Because despite not having a strong precedent in my family medical history, despite “Doing everything right,” despite having been checked the day before my son was born, and my doctor not finding any reason to expect what happened the next day, and despite their being no determinable reason….the above inner-and-outer dialogue came from my own life, and, quite simply, I was crying too much to type, as I thought back on it.  The terrifying thing is, that doesn’t have to have been autobiographical.  Each year, in the United States alone, more than 540,000 babies are born too soon, and no one knows what causes half of those premature births.   (And as for what can be figured out, well, for the second year in a row, the USA earned only a “D” in the March of Dimes Premature Birth Report Card.)  A March of Dimes report released in October found that 13 million babies worldwide were born preterm, and more than one million die each year.  Prematurity is the leading cause of newborn death, and those babies who survive often face the risk of lifetime health challenges, such as breathing problems (like asthma), weak immune systems, cerebral palsy, mental retardation and other physical and neurological disabilities.

Even for those miraculous few who not only survive but end up, medically, none the worse for wear — being physically and neurologically healthy and having “caught up”, developmentally, by the age of two or three, and staying on track or ahead — things rarely slip comfortably into what passes for normalcy among families that never saw the H. R. Geiger-esque nightmare of a NICU.  To begin with, the medical care required by a preemie between birth and a clean bill of outpatient-standard health, can cost in the millions, which, even if you have reaaaalllly good insurance coverage, will still find ways to leave families gasping in the quicksand of medical debt.  Even if you can somehow pass that off as mere logistics, there’s increased awareness of parents of infants requiring NICU time suffering from Acute Stress Disorder, sometimes ending up with Post Traumatic Stress Disorder.  I can believe it.  Add in fun possible options like not having a good enough local support system, work/leave scheduling issues, other children, proximity/transportation issues when the mother is released and the infant isn’t…….

The bottom line is, prematurity isn’t just about the babies, and just about the time between when they are born, and when they should have been born.  Prematurity is about lives….the rest of them.  Over the course of the rest of this month, I will be publishing the stories of families that have dealt with the issues of premature birth.  Each of these stories is different, and each offers harsh, but important lessons to be learned.

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For More Information:

Part 2 of this article shares the story of Danika Edwards, who was 10 weeks premature and has Down Syndrome.  Part 3 and Part 4 tell the story of Aidan and Ryan VanNostrand, both preemies who were left neurologically disabled.  Part 5 introduces you to Oliver Cole, a micropreemie left medically fragile, physically and possibly neurologically disabled.

A directory of some of the many blog posts made for Blog For Prematurity Day and Prematurity Awareness Month

Take a peek at The Preemie Primer from Examiner Jennifer Gunter

• For general inquiries, the March of Dimes Foundation‘s National Office can be reached at:

March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
(914) 997-4488

Or contact your local chapter with questions about March for Babies, special events, and other local activities.

A resource on understanding Post Traumatic Stress Disorder (PTSD) and Acute Stress Disorder