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.

Adult Children Moving Back Home: Too Much of a Good Deal

13.

It always gets that bad ‘unlucky’ rap, even in these progressive days and times. There’s just no escaping it.

So it will be no surprise to parents, who thought they saw the backsides of their children when they sent them off a full-paid college experience, that 13% of parents with grown children now claim to have at least one back in the home with them (see Pew Research Center citation below).

And here’s a good one. About 52% of recent grads live with their parents, up from 40% reported in 2009 (see Monster’s 2010 Annual Entry-Level Job Outlook, quoted by Peter Vogt).

Since we’re having so much fun growing these numbers, here’s one for you: almost 60% of twenty-two-to-twenty-four-year olds are living at home. The way I understand statistics (which is not at all), that sounds to me like if you had 5 children between 22 and 24 (which isn’t that likely, now that I think about it), 3 of them would be living with you. [That’s what you get for having five kids in two years, I say.]

The truth behind these numbers is that many college graduates simply can’t find jobs that will support them in their own homes and allow them to build independent lives.

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But there’s a fine line between moving back home to wait out the job market, and staying at home because it’s pretty great there. Even if you don’t mind your adult children living at home with you–and it’s a lovely thing if you don’t–it’s best for them  if they can achieve as much independence as possible in life, and that includes heading outside the four walls of their childhood.

However, there’s a distinct difference between not finding a job in the field you want, at the salary you want–and not finding a job at all.

My younger daughter got her master’s in education, and as time for graduation approached her career counselor informed her of the facts:

“You’re going to go in to a job interview and tell them: ‘I’m looking for a job in first grade. I love first grade. I’m an expert in early literacy. I did my student teaching in first grade. I think it’s adorable when kids lose their teeth. I’m a Dr. Seuss addict. I don’t mind when children pick their noses. I’ve always dreamed of teaching first grade. This is my calling.’

And they’re going to say back to you, ‘Well, we’ve got a job, teaching 7th grade science to behavior-disordered boys. It’s up to you.’

And you won’t even have time to inhale before you say: ‘When do I start?'”

Because if a person truly wants to work, they can almost always find something.

But let’s say that, for whatever reason, your child has come home to roost. For you and for your child, it’s best to set some expectations around this arrangement, with the end-goal of having your child live a more adult, independent life.

First, although this will be fluid, set a time-table you both agree upon. Realizing his days are numbered might light a fire under your child like no amount of nagging ever could. If this date has to be extended, make it a very finite extension, without possibility of further negotiation.

Be cautious of making home too ‘homey.’ Living with one’s parents shouldn’t be so great that a child never wants to leave.Rules you feel strongly about must be clarified and enforced. If your child can’t, in his twenties or thirties, keep his room clean of food, hang up his jacket, put back items he’s taken out, ask you before he has friends stay over, stay clean and sober and wake up at a reasonable hour, you may need to re-negotiate his staying.

Remember the days when you had a grocery list up on the fridge, and each kid got to write in his favorite foods that he wanted Mom to pick up from the store? Those days are over.

As are the days of your doing your child’s laundry. You can either make it a communal task, or your daughter can take over her own wash. [Does she need to throw her towel down he laundry chute after every shower? I mean, you get out of the shower clean, right?]

If your child would like to benefit from the maid’s time, she might either pay for that from earnings or by doing some other household chore.

Children should be responsible for some amount of food prep–and some amount of cleanup.

Make clear your expectations of your child.  In the posts “But What If?: Adult Children With Extenuating Circumstances” and”Adult Children With Extenuating Circumstances: Some Plan B’s” I offer a list of ways in which even disabled or temporarily disadvantaged adult children can contribute to the household, from errand-running to food prep to dog-walking to computer maintenance and more.

Well and able-bodied children are capable of even more extensive contributions, from financial ones (they can pay rent, to teach them about financial discipline, or can contribute something to the mortgage) to computer ones (they can run Dad’s website, they can keep the family’s finances on an Excel spreadsheet, they can set up and run computerized bill-paying programs for the family) to DIY ones (they can help re-model the basement, creating a living room for themselves and a rec room for the family; they can fix failing appliances, saving the expenditure on a handyman), to practical ones (they can drive mom to the bus stop every morning, they can take in the family cars to be serviced,

They can take on responsiblity for household pets, they can be in charge of their littlest sister after she gets home from school so they can deal with her spoiled tantrums).

And, finally, don’t protect your child’s savings at all costs. Whether from their bar mitzvah, their Sweet Sixteen, or some other occasion, many children have savings that parents are loathe to touch. But if your having your child is becoming a financial burden to you, or if dipping into those savings would enable your child to finally transition out of your home–well, that’s what the money is there for.

26% of parents have had to take on more debt to support their adult children, but older adults can afford the debt less than their offspring. Before you put yourself in hock, let your child spend some of his money contributing to the household or going solo–he has more time and years to make it up.

In short we need to return to the two main concepts involved in raising children of any age, but particularly when dealing with adult children who don’t seem to be moving on as quickly as we might hope–the concepts of “setting boundaries” and “just say no.”

If you can institute those two techniques, and follow the advice given here for establishing expectations, the time you have with your adult child at home might actually be a special and unexpected gift.

Or. . . .

at least it will be time-limited.

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