Tommy is Legally Blind
A mother's story of her son, born premature and vision impaired. No child has more love of life.
By Darlene Almer
I believe in miracles! My proof is my son, Tommy, born at 25 weeks gestation, weighing 1 pound 11 1/2 ounces and 13 long. He was born by emergency C-Section due to premature labor that progressed beyond the point of no return. The day before he was born, I’d had an ultrasound and been given a DUE date of September 20 -- his BIRTH date was June 10, 1992.
After a 2 day separation from him, my husband, Jim and I followed the route the NICU (Neonatal Intensive Care Unit) ambulance crew had taken to Emanuel Hospital in Portland to meet our tiny son. Before entering the NICU, we had to scrub and gown up as if we were doctors. The hospital family liaison led us to the glass sided bed in which Tommy lay. Tears sprang immediately to my eyes as I saw him for the first time--so tiny and frail with respirator tubes weighing his little head own, minute IV lines running from a row of syringes holding the tiny amounts of fluid being infused into his body. There was a tiny feeding tube, an oxygen saturation light taped on his foot, a heater to help maintain his body temperature above the bed and monitors beeping and glowing nearby. They told me his total blood volume was only 4 tablespoons in his entire body. As I gazed at his precious little body, I spoke and he raised his eyebrows. A nurse said, "Oh look! He knows his Mommy’s voice." And tears ran more freely down my cheeks.
I remember other milestones vividly: finally holding him, respirator tubes and all, at 8 days, finally catching a glimpse of his sweet face without tubes and wires and finally hearing his first cry at one month, nursing him for the first time at two months, giving him his first bath by myself at 10 weeks. I was to repeat the NICU process and travel that road daily for the next 11 weeks, ripping my heart out each time I had to leave my baby there and go home without him. Thank heaven for the compassionate NICU nurses who kept assuring me how normal I was behaving!
Tommy was very strong and more developed internally than he should have been, so he had a much smoother NICU course than most babies his size. He grew rapidly and after a couple of setbacks, came home on August 25, 1992 --- four weeks before he was due.
Babies born at such low birthweight, in addition to many other complications, risk an eye condition called Retinopathy of Prematurity (ROP) where the blood vessels in the eye stop normal development and begin growing wildly which can cause glaucoma, retinal hemorrhaging, blindness and other things no child should have to be faced with. Well, after being home for a month, Tommy’s routine eye check showed he had “plus stage ROP in both eyes and needed surgery ASAP (as soon as possible). We were sent to Casey Eye Institute, a part of OHSU and within a couple of days, I handed over my 7 pound son to the care of surgeons and anesthesiologists, hoping they could save his eyesight.
On Post Op. check up, it was found that scar tissue has formed and was contracting, pulling Tommy’s retinas loose. As Dr. Robertson told me his findings and said he wanted to try to reattach the retinas with more surgery, I felt faint and had to ask him to take my son so I wouldn't drop him. This just was NOT fair that this child had already gone through so much in his short little life and now there was to be more.
A few days later, 2 more surgeries were performed with the end result being unsuccessful reattachment in the right eye and successful in the left eye. There is a fold through the macula (where central vision occurs) in that left eye, so Tommy has only a partial field of vision there and is also very nearsighted in that eye. Light perception remains in the right eye.
We were fortunate in having Early Intervention Services from the time Tommy was 7 months old. They taught me how to teach a child who is visually impaired how to do the things most children learn by watching -- how to roll over, crawl, walk and so much other stuff. Approximately 95% of learning is visual, so you can see what a challenge our family faced. Head Start preschool, a 2 year stint, was also extremely beneficial. Today, Tommy is 6 and entering 1st Grade. He will be in a regular classroom with support from the School District Vision staff. He'll be learning Braille and keyboarding to do his work. We have been blessed with a wonderful Teacher of the Visually Impaired, Patricia Kelley, who has such a dedication to and love of the children she is involved with, he can't help but have a successful experience in school. She has been a godsend to us.
Though Tommy is legally blind, I know of no other child with more love of life. He is a very visual visually impaired child who uses every bit of sight he has. His attention to and interest in details amazes me. No one can identify year and make of cars, real or toy, like this kid! His cognitive skills are way beyond his age, his memory like an elephant's and his logic sometimes scares me - it is so advanced for his years. There is no limit on the possibilities for this child -- my angel and miracle -- Tommy Almer! I am so proud to be his Mother.