National Prematurity Awareness Month and Day

My oldest niece is the closest I ever came to having a child of my own.

I do fully understand that you can never truly grasp what it’s like to have a child until you do, indeed, have one, but if all it took was a love so deep and wide that the famous Spanish explorers could drown their armadas in it–well, I’d qualify as a psuedo-parent.

I even had that crazy and most unpleasant paternal trait, that one where, when your child does something, anything, that you think is special, it makes you want to go outside and accost total strangers: That’s my kid! Did you see what she can do?

When my niece was real young and wanted someone, someone important like mom, she would call out “Auntie Rhona – Mommy,” as if we were one, one person whose attention she needed, one person who had to see her latest creation, one person to the rescue.

My love for her has always held its own, and, even now, now that she is a teenager, with all that that entails, it is still there, holding her–and she is not too big to fit.

But there is something particularly special about my precious niece – something that would’ve changed the structure of my world inalterably if her apparent destiny had become reality.

Sophie should have never made it out of the neonatal intensive care unit (NICU).

Sophie is not just my special niece (and I’ve got others, who, believe you me, I’ve got no lack of love for) because she is the first, because she is so acutely sensitive to others’ needs, or because she is “a good kid.”  Sophie holds a special spot in all of our hearts because she she came into life the size of a Bic pen.

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12 years ago we knew good news wasn’t coming.

My sister had pre-eclampsia, a no-joking condition that’s a combination of raised blood pressure and something called proeteinuria, which–pretty much like it sounds–is the presence of protein in the urine. Unhindered, it can damage organs like the liver or the kidneys, leading to issues with blood clotting.

I don’t have one positive thing to say about pre-eclampsia–except that you can only get it when you’re pregnant.

Now, you should know, in my family we don’t mess around.  You see the word ‘pre,’ and, having done 7th grade grammar, you realize it means ‘before’ (that’s what I’m assuming you know; no need to set me straight). But the illness has the potential to progress to a much more dangerous condition–eclampsia.  That occurs in only 1 in 2,000 pregnancies.

My sister, apparently, didn’t want to miss that part of the action.  Eclampsia can cause fits and convulsions, and–and I bless my stars we all were too stupid to know this at the time–can also cause the deaths of both mother and baby.

Worldwide, preeclampsia is responsible for up to 20% of the 13 million preterm births each year.

A baby is considered premature if it is born before 37 weeks, and considered severely premature if born before 32 weeks.

My niece was born at 27.5 weeks. She weighed 1 pounds and 13 ounces.

This, in short, is far less than ideal.  But, sadly, it is not unusual.

In 2009 the March of Dimes (I’ll come back to them) and the World Health Organization published the first white paper on the “global and regional toll of preterm birth worldwide.”

Of the 13 million infants born premature each year, more than one million of them die within a month of their births.

Additionally, premature births make up 9.6% of all births and 28% of newborn deaths. The highest rates of premature birth are in Africa–which is what you probably figured.

Now guess where the second-highest rates are.  Clear yourself of all prejudices.

What’d you guess? South America? Asia?

You lose.  North America has the second highest rates (that IS Canada and the US combined, but still).

Premature babies (assuming they live at all) can–and often do–suffer from any or all of the following short-term problems:

  • Babies born before 28 weeks are at heightened risk of intraventricular hemorrhage, or bleeding in the brain.
  • Difficulty breathing is common, due to an immature respiratory system. In serious cases, this can prevent other organs–themselves not fully developed–from receiving the oxygen they need.
  • Hospital acquired infections affect up to 40% of infants in the neonatal intensive care units (NICUs).
  • Babies born before 30 weeks frequently  experience a heart problem known as patent ductus arterioles (PDA), an opening between two major blood vessels leading from the heart.  They also suffer from low blood pressure.
  • Any baby born before 38 weeks has a higher risk of developing blood problems, like anemia (insufficient red blood cells) or infant jaundice (yellowish skin discoloration of the baby’s skin and eyes).

Assuming the NICU sends the premie home with the above problems resolved, there are long-term problems to face, as well.

  • Currently, one in 10 babies is born prematurely in the U.S.  Half of those who are extremely premature will go on to have mental or physical disabilities, a quarter of them severe.
  • Researchers in Rhode Island determined that at least one-third of babies born pre-term need school services at some point during their education.
  • One in 10 premature babies will develop a permanent disability such as lung disease, cerebral palsy, blindness or deafness.
  • Chronic lung disease that requires ventilation occurs in at least 20% of preterm infants.
  • While the prevalence of mental retardation is 0.4% among full-term infants, it is 4.4% among premies.

Clearly, the babies need intervention, and the parents need support. So in 2009, to raise awareness of the seriousness of the issues facing children born too soon, the March of Dimes began their campaign for awareness with Prematurity Awareness Month in November.  Within that, World Prematurity Day was launched on November 17 in 2011 and has grown far beyond the founders’ initial projections, currently being observed in over 50 countries.

So. . .another awareness month.  What now, right? Wondering what you can do to make a difference?

The March of Dimes is glad you asked. First–what is this March of Dimes?

The March of Dimes is an interesting organization begun by President Roosevelt himself in 1938 to fight polio, which it did–quite effectively–until the mid 50s.  With the invention of the Salk vaccine in 1955, they were out of a mission, so to speak, so they pretty much had the choice of either disbanding or finding themselves a new purpose.

It always takes some time to truly find yourself, so it wasn’t until the mid-1960s that the organization decided to focus its efforts on infant mortality and birth defects. In 1976 they changed their name to the March of Dimes Birth Defects Foundation, and in 2005 they added to their mission reducing the number of preterm babies–and the damage these babies suffer post-birth. They, of course, have lots of ideas about what you can do.

  • You can donate to the March of Dimes’ program to support families in the NICU. Giving birth to a premature child is overwhelming and difficult, and the March of Dimes NICU Family Support says it is there for the parents during their “baby’s stay in the hospital, during the transition home, . . .and [even if their] baby never makes it home.”
  • Thought it was all going to be about giving money?  March of Dimes asks you to donate your cell phone. They say they can raise money through that venue to go ahead and improve the health of premie babies.
  • You’re more of the ‘get-up-and-go’ type? There’s Mothers March, which is actually the organization’s first–and largest– fundraising event, begun in 1950 (again, then to fight polio), but which has morphed into a campaign to give babies the best start they can have in life.

But really, you don’t need the March of Dimes to make the Awareness Month or Day special.  You can always blog about prematurity–its causes and its effects.

You can make it your business to spend some time visiting babies in the NICU. Studies show that tactile stimulation (including massage or cuddling, but also including just plain human touch) can improve weight gain in premature babies. Spend 20 minutes a week cuddling a premie.

Or–if you’re as lucky as I am, to have a premie in your life who has not just survived but thrived–well, you can hold that success story tight and tell her how much you love her. Because her fight to make it has altered and enriched your world forever.

Wear purple today and all month–the color for prematurity awareness.

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