Saturday, November 16, 2013

World in Crisis. 760,000 Dead. #borntoosoon #worldprematurityday

This post is long, but I ask that you continue reading to the end. I promise I'm not asking you to buy or donate anything. Just read.  

Nine years ago, my family tumbled headfirst into prematurity. My little sister, known around here as the Keeper of Cheerios, went into labor with her first son when she was only twenty-nine weeks pregnant. That's a full 11 weeks (nearly 3 months) before he should have made his debut into the world. Kaia was born weighing a little over 3 pounds, and spent a miraculous 3 weeks in the Neonatal Intensive Care Unit (NICU) before he was strong enough to leave the hospital.


A few months later, the Keeper got pregnant again. The doctors assured her there was little chance of a repeat premature birth... but they were wrong. At five months, she started bleeding. She looked nine months pregnant with twins. At twenty-seven weeks, she went into labor. Aloshua was born twelve hours later, also a little over three pounds. Unlike his brother, Losh didn't breeze through being a preemie. We spent over three months in the NICU with Losh while he struggled daily. At a year old, he'd undergone numerous surgeries, weighed 12 pounds, required a ventilator 24/7, was tube fed, needed a catheter every 3 hours to help him pee, couldn't hold his head up, sit up, get up on his hands or knees or do any of those little things that all parents celebrate. For eight years, Losh has struggled with the simplest of tasks and setback after setback.


When Losh was three, his mom had a surprise pregnancy. This time, a little sister for the boys. Most parents-to-be celebrate the weeks by counting down how many more they have to go. Not the Keeper. Each week, she took stock of what her baby's survival rate would be if she went into labor. At twenty-three weeks, the Keeper knew her baby had a 17% chance of survival if born. At twenty-four weeks, there was a 25% chance of survival. At twenty-five weeks, with only a 50% survival rate, she went into labor. She remained in the hospital for over a week, scared to moved too much for fear doing so would make things worse. After a week and a half, the doctors had no choice but to do an emergency c-section to deliver the Little Princess (aka Abby), who hadd gone into distress in a dry womb. Abby was born on the last day of March at 1 pound... She was the size of a cellphone. Her daddy could fit her into the palm of his hand. Like Losh, she spent months in NICU, struggling through setbacks.

At nine, eight, and five years later... all three of these amazing little kids continue to struggle because of their early births.
 
Kaia, the eldest, has Tourettes Syndrome... some days his physical tics are so bad, he's unable to complete therapy for a learning disability common in children born prematurely. He has impulse control problems, and is hyperactive. He's small for his age, and he has speech and occupational therapy three days a week. He's able to do math that, at twenty-nine, I still can't do. He knows how to beat every video game you put in front of him. He loves making instructional YouTube videos and doing parkour. Like me, he's scared of everything. He's also the most compassionate and big-hearted nine year old you'll ever meet. His brother and sister drive him crazy, but he takes his role as their protector seriously. No one touches Losh during cold or flu season without a pointed reminder from Kaia that they need to wash their hands first. He's wickedly funny, and will make you cry laughing at some of the off the wall comments he blurts.


Losh, the middle, is wheelchair bound, has a trach, a feeding tube, has undergone twenty-three surgeries, and was on a ventilator until he was seven years old. We've almost lost him numerous times. He has a lifetime of surgery still ahead of him. He's incredibly smart, but he's developmentally delayed. He can't read or do basic math. He may never potty train. He can't walk. He didn't learn to talk until he was five... or tell his mom that he loved her until he was six. At eight years old, he weighs only 38 pounds. He gets four to five thousand calories a day... that's two to three times what the average adult requires. He spent nearly three entire years in the hospital, often spending weeks and months at a time unable to go home. When he did come home, his room was an intensive care unit, complete with an around the clock nursing staff. He has his own restaurant at home... He charges a fortune for invisible food served on paper plates his Papa gets suckered into buying for him on a weekly basis. He loves doing things for other people. He fundraises for the hospital, collects PopTabs for the Ronald McDonald House, and holds lemonade stands for Alex's Lemonade Stand Foundation every year. His smile touches hearts, and his laugh absolutely melts them. There is nothing this little boy can't figure out... including how to win friends as soon as he rolls into a room. He's always happy. He loves doing crafts. His best friend is Ronald McDonald (who Losh lovingly calls Arnold). Ronald takes that relationship quite seriously and always makes a point to hang out with Losh whenever he's in town.

Abby, the youngest, has terrible vision and a speech impediment. Unless you spend significant amounts of time around her, you probably won't understand half of what she says. Her vocabulary is extensive... frightfully so... but the ability to spit those words out coherently just isn't there. Her hands, feet, arms, and legs are riddled with scars from her time in the NICU. We don't yet know the extent of what challenges she will face as she continues to grow. She struggles with impulse control. She's painfully shy, but will sing her heart out. She adores going on shopping trips with her daddy, hanging out with my husband, or having Princess Days with me. She's a total diva. Ever since she was a baby, she'd also made some of the most hysterical facial expressions you will ever see. She learned to roll her eyes before she learned to sit up. She refuses to believe that Losh is her big brother because he's smaller than she is. He is also her best friend, and they've always fought like crazy. Their first day home together, they had a hair pulling fest that took two adults to end. But just try to get on to one of them with the other in the room. They'll both cry, or try to beat you up.

These are the miracle children who have forever changed the way my family views pregnancy, infancy, and childhood. They aren't just fighters, they are survivors. And no one knows why they were forced to endure so much trauma months before they should have ever been born.


There are millions of children just like them. This year, over thirteen million children will be born prematurely, and in most instances, no one will ever know why it happened. Thirteen million children will suffer lifelong challenges like Losh's serious medical complications, and Kaia's learning disabilities for reasons the world hasn't quite figured out. Over 500,000 of those births will occur in the United States.

Globally, one million preemies will not survive their first year.

Take a moment to think about that. 

ONE MILLION babies will never grow up, just because they were born too soon.

One million families will never get to see the people their babies could become. They'll never get to see expressions like Abby's, smiles like Losh's, or compassion like Kaia's. One million families will bury a newborn this year.

The enormity of that is overwhelming. Too overwhelming to comprehend.

Today, World Prematurity Day, is about honoring those children. And about celebrating the millions like Kaia, Losh, and Abby that survived. It's about taking five minutes out of your day to truly think about the impact of prematurity and pass it on.

And that impact is daunting.
  • 1 in 10 babies born prematurely are at risk for a life-long disability such as lung disease. Other health challenges faced by premature infants include: low birth weight, underdeveloped organs, breathing issues.
  • Premature infants are also at greater risk for life threatening infections, respiratory distress syndrome, cerebral palsy, learning disabilities and developmental delays and disabilities.
  • In the United States, care of an average preterm infant is $49,000 for the first year. In relation, the cost of care for a full term infant is only $4,551. For full term infants with health complications, the average cost of care for the first year is $10,273. In 2003, the United States alone spent over $10 billion for prematurity associated health costs.
  • For a premature infant with health complications such as lung disease, the average lifetime cost of health care is over $1 million.
And those are only some of the consequences of prematurity.
 
But prematurity isn't hopeless. Over seventy-five percent of the preemies who die each year could be saved.
 
Think about that for a minute, too. 760,000 babies die needlessly each year.

You don't have to buy anything, sell anything, donate to anything, or even sign up for anything to help stop that. All you have to do is make a pledge to yourself to learn more about prematurity and the preemies in your life (and trust me, there are preemies in your life... just ask on Facebook or Twitter which of your friends or family members have or were a preemie. You'll be surprised.) and pass on what you learn to others. Educate yourself about the devastating consequences of preterm birth, and pass on what you learn to others.
 
 
 
And at some point, when the opportunity arises, take one more small step by getting involved. Whether that's by walking for the March of Dimes in the March for Babies, urging your Congressmen to pass legislation aimed at protecting infant health, sending spare toiletries to a Ronald McDonald House, donuts to a NICU waiting room, putting local NICU families on your prayer list at church, tossing a few coins into a donation box, sending Christmas cards to a NICU in your area, or something else entirely.... make a promise to yourself to get involved by doing something to help solve the problem and ease the burden of families the world over.

The opportunities for you to make a difference are limitless, and I promise you that you will never once regret the time you spend offering comfort to a family in an unimaginable crisis. Whatever you decide to do will have a lasting impact, and might just be the push needed to end this crisis once and for all.

760,000 babies.

Just think about it.

To learn more about Prematurity and World Prematurity Day, please visit the March of Dimes and #worldprematurityday on Twitter.
 

All my love,
Ayden
 

FALLThe Ragnarök Prophesies: Book Two is now available at Amazon, Barnes and Noble, and KOBO. FADE - The Ragnarök Prophesies: Book Two is available at: Amazon US | UK | DE | FR | IT | ES | Barnes and Noble | Kobo | Books-a-Million. Ten percent of sales of FALL are donated to the Spina Bifida Association through April, 2014.

 

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