Adult Preemie Strong Wall

Thank you for the opportunity to add my preemie experience. Just as you commented,, little is known about the experiences of adult preemies.
I was born in the mid 1950s in a small town in northern Montana, 30 miles from the Canadian border.

I developed a moderate case of ROP, & started wearing glasses at age 2. My mother noticed vision issues when I was 7 months old & said 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 familiar with Retinopathy of Prematurity, there were no treatments for it, so mine progressed naturally. The macula’s should be positioned directly behind the pupil, but mine have shifted towards the center so that each one is near my nose, almost at the edges of the photo. The term for this is called ‘dragging’. I have always experienced sight challenges & was unable, for example to see the blackboard. My reading distance is about 4″ from my eyes.

In addition , I have some heavy duty sensory issues, neuropathy from Diabetes, as well as multiple neurological symptoms, learning disabilities, poor motor skills & brain processing issues as well as many other issues. Therapy for Sensory Dysfunction did not exist, nor did special education or alternative PE. I attended school with the ‘regular’ students. Teachers & educators were not aware of these issues, and rather than receiving the support that I needed, I was blamed, accused of being lazy & stupid, scolded for poor grades, when I was actually trying as hard as I could. There were no tutors for me either. PE was a nightmare every day, as I was unable to do sports, catch balls, swim, run, roller skate, or other activities. I spent an entire summer practicing to ride a bike when I was 12, because I had failed on earlier attempts. Having invisible disabilities in a time when no one was familiar with them (not even family or parents) was humiliating & embarrassing, & I spent my life ashamed of & hiding how I functioned. I knew that I was different than other people, but didnt know why. At home, I was scolded & blamed for not listening, following instructions, & getting poor grades.

I first asked a doctor when I was 16, why I was different & he just ignored my question, as did all other doctors & social workers. When I was 45, after a google search, I learned about Sensory Dysfunction & I tried to receive a diagnosis, only to learn that only children are treated for it. The private therapy is too costly for my budget, so I still have all the symptoms, even at my age. Sensory Dysfunction & many disorders from prematurity are not recognized as an ‘official’ condition & does not have a diagnostic medical code. In addition, most doctors feel that children ‘catch up’ with other children & eventually outgrow sensory issues.

2 years ago, I had a mild stroke & had brain scans done. This was the first time I looked at an image of my brain. I’m sure people’s brains vary, but mine didnt look right. Since then, I’ve read the articles that show brain scans of people with SPD & Autism in connection with a study from the University of San Francisco that shows variations in brains of people with sensory disorders.

I don’t say much about the issues I have to deal with on a daily basis, because people just don’t understand. They expect me to speak & respond as quickly as they do, don’t understand when I become confused or are unable to remember details to fill out medical forms, or follow a string of instructions.
I have ‘gotten by’ from writing everything down, such as new job instructions, to directions around office buildings, to instructions from doctors, as well as how to find my way to and from stores in malls and how to get to and from the bathroom and around hospital corridors.

For employment, I worked in retail, as office work was too hard on my eyes, then I went into the sewing machine industry, teaching classes on how to use sewing machines & sergers, as well as specialty classes. It probably sounds odd, that I can sew with my poor vision, but my close vision is better, so I really did ok. My ROP prevented me from driving, so I took public transportation to get to work locations, appointments etc.
Over the years, I have lived in 5 different states, have traveled to many different places using trains, busses, planes, alone & with spouses and friends. I love to cook & have done so since I was a teenager.

I was married at a young age & suspect that my invisible disabilities contributed to my ex wanting out. Maybe, he felt that I was too ‘needy’. Fortunately, later in life I met & married the sweetest, most understanding person & he is supportive & helpful in many different ways.
In concluding, I just wanted to say that as a formerly premature baby with no support or therapy, other than the eyeglasses, I feel that these experiences have made me a stronger more compassionate person & hope that all preemies can accomplish what they want & fulfill their dreams.

Jeanette M Carter

I was born at roughly 26 gestational weeks with several issues at birth. I had undeveloped lungs, a heart murmur and a few days after my birth I was diagnosed with an IVH, which is short for Intraventricular Hemorrhage. I was diagnosed with the most severe case at the time a level 5 bleed , which is now downgraded to a level 4 bleed. I stayed in the NICU for another 6 months fighting for my life. Unfortunately, my doctors told my parents that there was a very high possibility that I would be mentally disabled due to the severity of the bleed and not placing a shunt inside my head to relieve some of the pressure and decrease swelling.

Over the next couple of years my parents participated in Early Intervention Services with me to really help give me develop my motor and cognitive skills aside from what the doctors told them. My mother and father would give me their own special exercises at home to further help me with my motor and cognitive skills as well. I did a lot of things way slower than other toddlers my age for example walking , talking and even being unable to hear for years. My mother would take small pots and pans and clings them together softly to try and test my hearing at home to hopefully get a response from me. I struggled doing so many things over the years.

I went from receiving assistance from the state every month in the first grade until I made straight A’s to the third grade, where I started to read at a ninth grade level and eventually tested into the Gifted Education Program in my school district that same year. My parents never allowed me to feel any different from anyone else as the years went by.  I was able to watch my dad firsthand save complete strangers on their worst day ever from wrecked vehicles and burning homes and buildings as a firefighter for years . My mom would read to me every night as a child and as I became older she would make my younger siblings and I read several books in the summer and write a book report for each book that I had read that week. I played several sports growing up also.

I said all of that to say this: the power of giving can change someone’s life. I ask that each and everyone reading this message today gives their preemie a fighting chance…. Attitudes are more important than facts….

Today I am an electrical engineer.  I just recently finished my masters at Georgia Institute of Technology in Biomedical Innovation & Development. I hope to someday develop devices that help give other preemies like myself and their families hope for a better tomorrow and a healthier future.

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 knew from my mother that I had been a “little early.” That was all I knew and my OB didn’t care one whit about that nugget of information and told me that it was my first pregnancy and I would be “late.” A month later I was staring at my newborn preemie daughter as she struggled against the medical equipment in her incubator in the NICU.

Fast forward a decade later after my parents had both passed away. My brother cleaned out the house and found a bunch of items for me. Among my silly childish letters to my parents lay a telegram. A person had sent a note saying that I had been born a month early but that I “was okay.” Wow . . . I knew then that I was officially a preemie and suddenly a lot of things made a huge amount of sense. From lung issues, to struggles with coordination to mental health challenges as a teen and also with my daughter’s early birth. It all clicked into place.

We need to do better with neonatology in terms of helping these tiny babies once born, truly thrive beyond birth and beyond the NICU. To do otherwise after all of the huge investment of medical assistance is an insult. And I am speaking about all preemies, not just the tiniest of tiny babies, the micro-preemie. - Deb Discenza

Well first off I don’t have a preemie I am a preemie. I was born May 6, 1982 at 24 weeks weighing 1lb 13oz. 

Every day is a struggle for me mentally and some physically. 

But I’m alive and very thankful for my beautiful Wife Erica and my children Jace 2 and Marrisa 9.

- Jason 

I was the preemie, well micro-preemie, born approx 24 weeks gestation at 1lb 6oz. A fighter, I don’t know all of my story but I extubated myself at shift change while medicated in the incubator, received blood transfusions, and fought like no tomorrow. I was discharged on my due date March 1993. I was lucky to hit all of my developmental milestones on time, and don’t have much in the way of lasting direct effects of my premature birth. Given that it was in the 90s, chances were not the same as today’s. I have other unrelated genetic health concerns that may have caused the preeclampsia that necessitated my emergency c section and grand entrance into this world that December night, but nothing directly caused by my prematurity.
I consider myself beyond blessed, and try to spread awareness and hope for preemies and families. I’m a fighter, I feel this has made me strong, and I’ll never give up this life I fought so hard to keep.

- Loreena