Sunday, November 17, 2013

Preemie

This post is in honour of World Prematurity Day which falls on today, November 17.

Finished cutting, I put the scissors down on the table. Keeping the piece of paper I'm working with in the air in front of my face, I reach for the spot where I had placed the glue stick a few moments earlier. My hand finds empty air. I move the paper aside and look down at the table, but it's impossible to pick out the glue stick amidst the scattered mess of craft supplies.

"Where's the glue?" I ask no one in particular.

A few seconds later the stick appears in my hand. "Here," says the classmate sitting next to me. I thank her and hold the paper up again, getting as close to it as my nose will allow and tilting my head so that I don't block the light.

"How come you can't see very well?" asks the girl, watching me work.

My answer is only a little delayed as I concentrate on carefully lining up the objects I am pasting. "I was born too early and the treatment I needed in the hospital damaged my eyes."

"Why would doctors do that?" my classmate asks, seeming astonished that medicine could ever cause harm.

"I don't know," I say, and feel a moment of anger at the doctors who, I assume, must have made some sort of mistake.

I was six, and this is the first memory I have of explaining my eye condition and premature birth to another person.

As far back as I can remember, I have always known that I was born premature. I grew up knowing that my visual impairment was from retinopathy of prematurity (ROP)—damage to my retinas thought to be caused, in part, by receiving high concentrations of oxygen. I grew up knowing that the chronic cough I had was from scarring in my lungs caused by a combination of prematurity and treatments I'd needed to help me breathe.

Growing up, I had scars that I would periodically ask my parents about.

"Those are from needles you had in your head to feed you," my dad would tell me when I asked about the little round scars on my scalp where no hair grew.

"That's from when your lungs were filling with fluid and doctors had to do a treatment to save your life," my mom would explain when I asked about the scar on my chest.

"That's from a bad infection you had in the hospital," she said of the large scar on my ankle.

I didn't really believe my parents sometimes. Especially my dad's assertion that I'd had needles in my head to feed me. I thought he was making it up—until I was older and discovered that babies really do get IVs in their scalp.

Today, I can't imagine what my parents must have gone through. Both were younger than I am now, and I was their first child. And instead of being thrown into happy parenthood, they were thrown into the months-long journey that is prematurity.

My parents are sparse on details, but have told me what they remember. I was born three months premature in late 1981. My actual due date was not until early 1982. My dad tells of how, when I was born, I was small enough that he could hold me in one hand. I weighed two pounds and six ounces. My experiences after birth were starkly different from most newborns.

I was put on a ventilator and spent months in an incubator in the neonatal intensive care unit (NICU). I faced severe breathing problems, blood infections, heart issues, and other complications. I went into cardiac arrest at least once. It was nearly five months before I finally came home. Even then, I remained on a breathing monitor for several months after my discharge. Fortunately, the alarm that would sound if I stopped breathing never went off.

Had I been born a couple of decades earlier the medical technology to save my life would not have been available.

During my childhood, prematurity was sometimes brought up at family gatherings. An aunt or uncle would relate a story from when I was a baby. I always had a sense that I was somehow special. But prematurity was always a vague concept to me. I had never seen a NICU except in blurry Polaroid photographs of me in an incubator, covered in tape and tubing. I had never seen a premature infant, or known anyone who gave birth to one. The only other preemie I knew was a boy a few years younger than me who had the same eye condition, but had been left with no residual vision, not even light perception.

When I was in high school I began to watch E.R. on television with my mom. One episode we sat watching together (her on the couch, me sitting on a footstool six inches from the TV screen) took place in the NICU. Periodically, my mom would make a comment, or I would ask a question.

"Did I cry in the incubator?"

"Not at first. But when you were older, you did. Your cries were so quiet the nurses could hardly hear you."

After one question I commented in reply, "That's cool."

"No, it's not," my mom retorted, suddenly serious. "There were some really scary moments." I didn't ask any more questions after that. I suddenly realized, perhaps for the first time, that I really could have died.

As I grew older I began to realize that doctors had not made some sort of mistake. They had made a choice. Give me higher concentrations of oxygen and risk blindness, or give me lower concentrations of oxygen and risk death. I am forever grateful for them for choosing the former.

At the age of 17, in my second-to-last year of high school, I was told by my ophthalmologist that I had the beginnings of cataracts forming, and that they were a complication of ROP. I was a bit stunned. I had assumed that prematurity was just an interesting relic of my past, that the damage had been done. I had never thought that it could continue to crop up and affect me decades later.

As a teenager I used to sneak volumes of our family's Encyclopaedia Britannica into my bedroom to look up entries under my video magnifier. Among other things (including a failed attempt to read the entire tome from A to Z), I remember looking up information about premature birth and ROP. Through those entries I learned about the NICU, ventilators, and the possible complications of prematurity. Complications beyond visual impairment, including cerebral palsy, hearing impairment, learning disabilities, and neurological conditions. I was mortified one day when my mom walked into my room without knocking and saw, magnified on the video magnifier screen, what I was reading. She was completely understanding, though, and said I shouldn't be embarrassed about wanting to learn about prematurity.

Shortly after I was told I had cataracts I logged on to the still-fledgling internet through our dial-up connection and found a listserv for adults with retinopathy of prematurity. Through this list I discovered that there were a wide range of complications that could occur in adulthood, everything from cataracts to glaucoma to retinal detachments. I still participate on this same discussion list today, although its location has been shuffled around several times as services change and moderators come and go. As an adult I have begun to experience more of these late ROP complications. In addition to cataracts, I have experienced retinal tears requiring several laser surgeries and, most recently, been referred to a glaucoma specialist for monitoring.

During the past few years many of my friends and peers have begun families. And, suddenly, premature birth has become very real to me. Through e-mails and Facebook posts I have seen the journeys of at least five preemies born over the past few years. Some only a few weeks premature, some many months premature. I know of twins born extremely early who, at this moment, are in the NICU, where they will be for many months to come.

In adulthood, I've come to realize how much of a miracle preemies are. How close to death some of us came and still survived. And how strong and resilient preemies are, even into adulthood. How some of us face lifelong challenges and still thrive.

And not just preemies. Their parents who share the journey with them, sometimes into their adult life. And the doctors who go through lengths to save their life, sometimes facing tough choices in the process.

And, sadly, I've also come to realize how heartbreaking preemies can be when, despite advanced medical care, some don't make it.

Of the preemie survivors who I have met as an adult, all have invariably expressed one sentiment, no matter what disabilities or challenges they face. They are grateful to be alive.

There is an award-winning documentary called Preemie, which I stumbled upon about a year ago. It tells the story of four preemies and is directed by the father of one of those babies. After the opening credits there is a montage of words that coalesces into the word preemie.

Hope. Struggle. Uncertainty. Fear. Miracle. Strength.

I can't think of a better way of summing up the journey of prematurity than those six words. So, here's to all the preemies—past, present, and future—and to their parents, families, and doctors.