Hope In A Plastic Box

Aunt Ayden’s biggest fan

Had anyone told me nine years ago that I would be a walking encyclopedia of prematurity facts today, I wouldn’t have believed them. I was nineteen years old then, and I had stars in my eyes. I’d survived high school, I was engaged to my best friend, and the entire world seemed full of possibilities.

In short, I was oblivious to the heartbreaking fact that thirteen million children are born too early each year, and that one million of those babies don’t survive to see their first birthday. I didn’t know the March of Dimes existed, let alone what they did for babies all around the world. And I’d never even heard of a neonatal intensive care unit, much less spent any significant amount of time in one.

That all changed a year and a half later.

My sister was only 27 weeks pregnant when she went into labor. Within an hour, we learned that this was no false alarm. Her little boy was coming, three months before his time. My sister’s obstetrician put her on a helicopter and sent her a little over sixty miles away, to the nearest hospital prepared to deal with a baby that early. My family followed behind, scared, confused, and completely ignorant of the terrifying journey that lay ahead.

Less than ten hours later, my nephew, Aloshua, was born. He cried once and then stopped breathing. I held my sister’s hand while a neonatologist and his nurses began CPR, trying to keep him alive long enough to get him to the intensive care unit where their work would begin in earnest.

My sister’s first glimpse of her little boy was as he was being wheeled away, surrounded by a team of medical professionals trying to keep him alive. Her second glimpse of him was as he lay in an incubator with tubes and wires running every which way through him. When she was finally allowed to return to see him the following morning, she had no idea what she would find.

Within moments of peeking in to see him, the doctor delivered news that no parent ever wants to hear. Aloshua’s lungs were severely underdeveloped. He needed a high frequency ventilator to keep him alive. And the bad news didn’t end there. Twelve full hours after birth, his nurse found an open hole in his back. He would need surgery for Spina Bifida as soon as he was stable enough to be transferred to another hospital, if they could stabilize him enough to move him.

The next day, we received more bad news. Aloshua had a brain stem malformation. His head was growing too large. He needed another surgery. Every day brought another setback as he fought for his life inside a little, plastic box. His lungs weren’t improving. His intestines were on the wrong side of his body. He had a hole in his heart and another in his diaphragm. He had something wrong genetically, and no one knew what. For weeks, setback after setback kept our world spinning.

Every step forward was met almost immediately with two steps backward as my family sat by his incubator, helpless to do anything but hold his little hand. For weeks, we weren’t allowed to hold him. We couldn’t even kiss him through the paper-masks we were required to wear. Everyone asked what they could do to help, and we had no answer. We didn’t even know what to do, how were we supposed to help anyone else figure out how to help?

As weeks turned to months, Aloshua slowly improved, but his problems continued to pile up. At a year old, he’d already been through numerous surgeries, and needed many more. We’d nearly lost him multiple times, and the odds were still stacked against him. He ate through a tube twenty-four hours a day, but weighed only twelve pounds, unable to grow when every bit of energy he had went to breathing. He’d spent more time in the hospital than he had at home, and his journey was far from over.

Over the next three years, our family practically lived in the hospital as an entire team of doctors and nurses fought for Aloshua. He required a trach and a ventilator twenty-four hours a day, seven days a week. He had to have breathing treatments every three hours. He needed a catheter to help him use the bathroom, medications to help him breathe, and around the clock intensive care interventions.

We learned everything we could about his conditions, and underwent months of specialized training just so he could come home with us again. When he did finally get to come home to stay, he needed an entire room simply to hold the medical equipment and supplies that came with him. At three years old, he couldn’t walk, talk, or even sit up by himself, and the only thing he’d ever tasted was milk. But Aloshua had something most kids like him didn’t have. He had the opportunity to live at home with his family and experience life.

Nine years ago, I never would have imagined that my family would look back at all Aloshua has gone through and will go through for many years to come, and say we are blessed. But we are, and we owe so much of that to the March of Dimes and the amazing things they do around the world to end prematurity, eliminate birth defects, and help the most vulnerable of children thrive despite the obstacles they face.

Each year, in nations all around the world, the March of Dimes spends millions of dollars to help give children a chance at life. Thanks to their work, preemies today are more likely to survive than ever before, we know more about birth defects than ever before, and we’re helping ensure even women in the poorest nations have access to the care necessary to give their children a fighting chance. Equally as important, we’re able to give children like my nephew, those who even five years before wouldn’t have left the hospital, a chance at a normal life.

When Aloshua came home with the trach and ventilator, he was one of only 170 children like him in the entire state who’d been fortunate enough to leave the hospital with such critical needs. Today, a few short years later, there are over 450 children like him living at home despite the serious medical complications they face.

Our work is nowhere near complete though.

The United States has one of the highest rates of preterm birth and infant morality in the world. Each year, 500,000 babies are born too soon here, and many of them will not survive. Of those who do survive, one in ten will face serious life-long medical complications like Aloshua. Most of those born early are at greater risk for life-threatening infections and respiratory issues. And one in four will suffer from developmental and learning disabilities.

This year, one million children like my nephew will die before they ever had a chance to live, simply because they were born too soon. My family has lived with that threat hanging over our heads before, and it’s brutal. No family should ever have to face that.

That belief is what motivated me to begin Fandom for Preemies with a group of friends two years ago, and to donate a portion of proceeds for sales of Fade to the March of Dimes and the Ronald McDonald House Charities of Arkansas. I couldn’t think of two organizations more deserving of my support.

Because of them, my family was blessed. We can tell Aloshua’s story with a smile, because his story continues to this day. He’s had twenty-two surgeries with more on the horizon. He requires a ventilator each night, and undergoes therapy 8 hours a week. He can’t walk on his own and didn’t learn to talk until he was five. His room is still full of medical equipment and supplies. But despite all of that, we get to celebrate each new milestone with him, and witness the thousands of ways he touches the lives of friends, of families, and of complete strangers. Other families never get to experience that.

I’m fighting to change that through Fandom for Preemies, and you can help.

Fandom for Preemies is a world-wide effort to raise awareness and funds for the March of Dimes via a shared love of writing and reading. Authors are encouraged to sign up to submit a piece of writing to the Fandom for Preemies Compilation, a collection of written  works in digital form sent to anyone who donates a minimum of $5 directly to the March of Dimes from now until November 30^th.

You don’t have to be a published author to help out. You don’t even have to write in a specific genre, or for a specific crowd. You can write almost anything you want, whether it’s a one thousand word sneak peek at a work in progress or upcoming novel, a five thousand word piece of fanfiction, or a ten thousand word original short story. And if you don’t have time to write something new, we always welcome donations of books and book swag to raffle off to donors.

Don’t write? There’s room for you, too! Graphic artists are encouraged to sign up to volunteer their services to make a banner or two for contributing authors. Readers are encouraged to reach out to their favorite authors and ask them to participate. And everyone is encouraged to make a $5 donation to the March of Dimes through Prematurity Awareness Month in November.

You can learn more about Fandom for Preemies, the March of Dimes, how to donate, or sign on to join the fight at http://fandomforpreemies.blogspot.com.

As the aunt of one very special little boy, I can tell you firsthand that the time you spend supporting the March of Dimes will make a difference for a very long time to come. I know because the little preemie doctors didn’t expect to leave the NICU is still here today, and he’s still fighting.