Adult Preemie Strong Wall

Thank you for the opportunity to share my experience as an adult preemie. As you pointed out, little is known about the experiences of those of us who were born premature, which is reflected in long-term outcomes data that is often lacking. I was born in the mid-1950s in a small town in northern Montana, just 30 miles from the Canadian border.

I developed a moderate case of Retinopathy of Prematurity (ROP) and began wearing glasses at the age of 2. My mother first noticed my vision issues when I was 7 months old, and she observed that when she placed food on my tray, I would move my face to about an inch away before I would take any. Although doctors were aware of ROP, there were no treatments available at that time, so my condition progressed naturally. My macula shifted towards the center, which is referred to as 'dragging.' I have always faced sight challenges; for instance, I was unable to see the blackboard, and my reading distance is about 4 inches from my eyes.

Additionally, I deal with heavy-duty sensory issues, neuropathy from Diabetes, as well as various neurological symptoms, learning disabilities, poor motor skills, and brain processing issues. During my childhood, there were no therapy options for Sensory Dysfunction, nor was there special education or alternative physical education programs. I attended school alongside regular students, where educators were largely unaware of sensory disorders. Instead of receiving the support I desperately needed, I was often blamed, labeled as lazy and stupid, and scolded for poor grades, even though I was trying my hardest. There were no tutors available to help me. Physical Education was particularly challenging as I struggled to execute sports activities and coordination tasks. An entire summer was spent practicing to ride a bike at age 12 after failing numerous attempts earlier. Living with invisible disabilities in a time when awareness was minimal was both humiliating and embarrassing, leaving me ashamed of my struggles.

I first inquired with a doctor at age 16 about why I felt different, but my question went ignored, just as all my subsequent inquiries did. It wasn’t until I was 45 that I discovered Sensory Dysfunction through a Google search, only to find out that treatment was primarily available for children. Unfortunately, private therapy is outside my financial means, so I still contend with all my symptoms well into adulthood. Sensory Dysfunction and other disorders related to prematurity lack official recognition and diagnostic medical codes. Many doctors hold the belief that children eventually 'catch up' and outgrow sensory issues.

Two years ago, I experienced a mild stroke and had brain scans performed, which marked the first time I had seen an image of my own brain. While I understand that brain structures may vary, mine appeared notably different. Since that time, I've read studies showing brain scans of individuals with Sensory Processing Disorder (SPD) and Autism, particularly those connected with research from the University of San Francisco, which highlights the variations in people with sensory disorders.

I often refrain from discussing my daily challenges because many people simply don’t understand. They expect me to respond as quickly as they do and struggle to comprehend when I become confused or have difficulty recalling details necessary for filling out medical forms or following instructions. I manage these challenges by writing everything down, including new job instructions, directions in office buildings, medical advice, and even how to navigate stores and hospital corridors.

In my employment journey, I worked in retail, as office work proved too strenuous for my eyes. Eventually, I transitioned into the sewing machine industry, teaching classes on using sewing machines and sergers, alongside offering specialty classes. While it may seem surprising that I am able to sew given my vision difficulties, my close vision is actually better, allowing me to perform adequately. My ROP forbade me from driving, so I relied on public transportation to commute to work and appointments.

Over the years, I have lived in five different states and traveled extensively by train, bus, and plane, both alone and with loved ones. Cooking has been a cherished passion of mine since my teenage years.

I married young, and I suspect my invisible disabilities contributed to my first husband’s desire to leave. Perhaps he perceived me as too 'needy.' Fortunately, later in life, I found and married a wonderfully supportive partner who understands my challenges and provides invaluable assistance.

In conclusion, I want to emphasize that my journey as a formerly premature baby without therapy or support—aside from glasses—has shaped me into a stronger and more compassionate individual. I hope that all preemies find the strength to achieve their goals and fulfill their dreams, and I encourage others to share their preemie stories for greater awareness.

I was born at roughly 26 gestational weeks with several issues at birth, facing numerous challenges that many adult preemies encounter. I had undeveloped lungs, a heart murmur, and just a few days post-birth, I was diagnosed with an IVH, or Intraventricular Hemorrhage. My case was severe, classified as a level 5 bleed, which has since been downgraded to a level 4. I spent an additional 6 months in the NICU fighting for my life. My doctors warned my parents of a high likelihood that I would face mental disabilities due to the severity of the bleed and the decision not to place a shunt in my head to relieve pressure and reduce swelling. This situation is reflected in long-term outcomes data regarding preemies like me. 

Over the years, my parents actively participated in Early Intervention Services to help me develop my motor and cognitive skills, countering the doctors' predictions. They created special exercises for me at home. I progressed more slowly than other toddlers in areas like walking and talking, and I struggled with hearing issues for years. My mother would softly knock small pots and pans together, hoping for a response to test my hearing. The challenges were numerous, but I persevered.

From receiving monthly assistance from the state in first grade, I was able to achieve straight A’s by third grade. By then, I was reading at a ninth-grade level and earned a spot in the Gifted Education Program in my school district that very year. Throughout my journey, my parents ensured I never felt different from my peers. I watched my dad save strangers on their worst days as a firefighter, tackling wrecked vehicles and burning buildings. My mom read to me every night, and as I grew older, she encouraged my younger siblings and me to read multiple books during summer, requiring a book report for each one. I also played several sports during my childhood. 

The essence of my story underscores this: the power of giving can change lives. I encourage everyone reading this message to give their preemie a fighting chance because attitudes often matter more than facts. 

Today, I am an electrical engineer, having recently completed my master’s at Georgia Institute of Technology in Biomedical Innovation & Development. My hope is to develop devices that provide other preemies and their families with hope for a better tomorrow and a healthier future, inspired by the journey of other preemie stories like mine.

Earl Bender Jr.

I don’t just run Preemie Crystal Ball; I get it from all sides. Not only did I give birth to my daughter Becky in 2003, but I also learned from my mother that I had been a 'little early.' That was all I knew, and my OB didn’t care about that nugget of information, telling me that it was my first pregnancy and I would be 'late.' A month later, I found myself staring at my newborn preemie daughter as she struggled against the medical equipment in her NICU incubator.

Fast forward a decade after my parents had both passed away. My brother cleaned out the house and discovered a collection of items for me. Among my childish letters to my parents lay a telegram. Someone had sent a note stating that I had been born a month early but that I 'was okay.' Wow . . . I realized then that I was officially a preemie, and suddenly a lot of things in my life clicked into place. From lung issues to challenges with coordination and mental health difficulties as a teen—much of it connected back to my early birth, as well as my daughter’s experience. Understanding these links has made me particularly aware of the need for solid long-term outcomes data regarding adult preemies and their unique challenges.

We need to do better with neonatology to help these tiny infants not just survive but truly thrive beyond birth and the NICU. To do otherwise, after all the substantial investment in medical assistance, is an insult. I advocate for all preemies, not just the tiniest infants, the micro-preemies. - Deb Discenza

Well first off, I don’t have a preemie; I am a preemie. I was born on May 6, 1982, at 24 weeks, weighing just 1lb 13oz. As I reflect on my journey as an adult preemie, I can tell you that every day is a struggle for me mentally and, at times, physically. However, I’m alive and deeply thankful for my beautiful wife, Erica, and my children, Jace, 2, and Marrisa, 9. My story, along with many others, adds to the longterm outcomes data that showcases the resilience of those like us. - Jason

I was a micro-preemie, born at approximately 24 weeks gestation and weighing just 1lb 6oz. As a fighter, my story is complex; I extubated myself during a shift change while medicated in the incubator, received blood transfusions, and battled against the odds. I was discharged on my due date in March 1993. I consider myself fortunate to have hit all of my developmental milestones on time, and I don’t experience many of the lasting effects that some adult preemies face. Given that my birth was in the 90s, the longterm outcomes data for premature births were not as promising as they are today. Although I have unrelated genetic health concerns that may have contributed to the preeclampsia leading to my emergency C-section, these issues are not directly related to my experiences as a preemie. 

I feel incredibly blessed and aim to raise awareness and share hope through my preemie story for other families in similar situations. My journey has instilled a strength in me, and I remain committed to cherishing the life I fought hard to embrace. 

- Loreena

My story: I, Jennifer Ann, and my identical twin sister Rebecca Lynn were born just a minute apart at 27 gestational weeks on January 18, 1987, in Omaha, Nebraska. Tragically, at 1:00 am on January 19, 1987, my twin sister Rebecca Lynn drew her last breath. Both of us were born identical and shared the same heart condition known as Patent Foramen Ovale (PFO). I believe this, along with Rebecca's low birth weight, contributed to her passing the next morning. I was documented at 2 lbs 12 oz when I came out first, but her weight was never recorded, and I never received an official death certificate for her. Therefore, when people inquire about her cause of death, I always say heart failure. As we approached the age of 31, I suffered a massive stroke and soon discovered that I also had PFO, but mine was successfully closed with surgery in December 2018. Finally, as we would have turned 36, I got my first tattoo honoring Rebecca and Jesus Christ. I promised our mother that I'd wait until I moved out to get a tattoo, and it would honor God first. So, when I came home with her initials and a purple cross tattooed on my shoulder, she was a bit upset. However, after I explained that it was about honoring Rebecca, she understood. 

What the pros got right: Nothing... And if you're asking yourself how one could be so cynical, just look at what I've endured as an adult preemie. Often, I simply wanted to give up and be with Rebecca Lynn. 

What the pros got wrong: The doctors have made numerous mistakes in my life, which is why I no longer trust them. I'm only considering this latest surgery because our parents are still alive, and I don't want them to experience the pain of burying another child. From the start, they should have PUT US TOGETHER for even one picture! This lack of documentation left me without any images of my twin. Growing up without that kind of connection made me increasingly frustrated with any doctor who treated me and led to a