Carson McCord was born 9:18 a.m. on March 23, 1994. He was born normal. Sweet angel emerged perfectly.
Thirteen weeks later, he was shaken to stop him from crying which left him in a vulnerable state that frankly we didn’t know if he would live or die. I am proud to say that after many years of pneumonia, spinal and brain menningitis, hoof & mouth disease from high temperatures, multiple IV fluids to get him back on track, leg braces, specially made shoes, back and chest braces, PIC lines and other items to help support him in his life, he is still here today and thriving.
Alex and Carson together at the fireworks
The doctors told me that he wouldn’t surpass four years old due to the severest brain damage that he received from the shaking. The shaking is whe
n the person holds the baby by the chest and vigorously shakes them or throws them up in the air with the baby landing back in the arms or left to drop onto something such as the so called “floor”. Carson had never fallen off a couch which I was told that fateful night that he was admitted to the hospital when he became non responsive.
Shaken Baby Syndrome is not a medical disease. I really don’t know why it’s called that. It is a matter of the shaking results that cause the blood to mix in with the cerebral fluid that keeps your brain moist and functioning. The fluid also travels down the spine to keep you moving. Unfortunately, when Carson was shaken, the menninges (they are like shock absorbers for the brain to protect it when hit, bumped etc) are ripped or turn from a dramatic impact to the head. The menninges were torn cauasing the blood to mix with the cerebral fluid which is not a good thing causing damage to the brain. When a baby is an infant, the brain has not fully developed in size and when the shaking happens, the brain slams against the skull causing damage in addition to the blood mixing with the fluid. Carson’s head hit his chest and his neck almost broke with the vigorous shake to his back. The cerebellum (this is the motor controlling and primitive part of the brain that sits at the base of the skull) was damaged in the process affecting walking and motor skills. The result of the shaken baby has caused him to not be able to walk or process information like normal children. He operates as though he is a five month old that laughs and coos. I have never heard him talk although I do pretend that he does and I hug him and pretend he hugs me back.
I am happy to say that we have been given the opportunity to collaborate with some of the best Pediatric Neurologists, Todd Barron, York PA, Dr’s at OSS for his physical braces and shoes, Dr. Angie at Children’s Dental Center and their team of professionals, Dr. Moore from Pediatric Care of York and Gastrologists in Lancaster and more for his care. He had developed some reflux that was due to the brain damage and his neurologic systems that we were recommended to place a feeding tube in order to feed him. It was so bad that he would cry for hours out of a day and once we had him tested, we were told her might have Barretts disease (this is like a cancer), we tried Prilosec which has been a miracle drug and I can say he has almost no inflammation in that area. I refused and with Carson’s strong will to live and my dedication to helping him progress by eating foods that are pureed. You ask why? Pureed foods tell the brain, “hey, food is coming get ready.” The brain processing and swallowing systems were slowed down to accept the food. Carson did loose some swallowing reflexes that prevent him from drinking like a normal person that is faster and lighter and more liquidity. I am sort of glossing over the details because of what it takes to take care of Carson of the span of his life, but I’m proud to say that due to the superior nursing care over the years, he has survived and thrived. His favorite foods are pumpkin pie (Barb Johanesy’s is the best) with whipped cream, creamy corn blended up, sweet potatoes and my soups that are made from scratch every week. He eats everything you and I would eat except pureed.
Nursing care has been a challenge over 20 years. Some were great and only two were not so great. We have really high standards for his care and the cleanliness of he physical being. Emotionally, he needed to be stimulated to eat, and we all were taught a variety of ways to learn to communicate with tactile (touch, textures, voice textures) responses. He is amazing! Since he had cortical blindess from being shaken, the results were the vitreous fluid hardened behind his eyes not allowing him to see. He has seizures that are called Grandmal (looks like a crab on the beach with the arms opened) and seizers that are more like someone staring in to space (we call this going into Carson’s world) He does take serious anti-seizure medication for this but as much as he is growing into an adult, it had to be changed. Without the amazing nursing care that Carson G. McCord has received over the years and the loving and nurturing to be inspired to be better and to try things within his capabilities, he wouldn’t be here today celebrating his 20th year of life. Thank you to all of Carson’s nurses over the years for your contribution to Carson.
see Carson when he was 16 years old here: Carson Shaken Baby video
Wheelchairs are a source of mobility to get from one place to another. I truly
Carson G McCord York PA had a specially made brace for his legs and hip to hold him up
believed that God would heal Carson after we had spent three months in the Hershey Hospital. The first wheelchair sat for almost a year because I couldn’t fathom that he wasn’t healed by then. I felt that I was giving up but after Carson had gotten much larger, I needed to pack the wheelchair into the car and move on with the day. We are on our fourth wheelchair and it seems he needs one every three years due to growing larger and as tall as a young man. He now weighs over 125 lbs and is over 4’5″. Tall!!! He still likes to be cuddled into my neck, likes Darius Rucker, Kenny Chesney (thanks Amy) and has attended music concerts such as Jim Brickman. He actually met Jim at the Strand Capital in York PA.
He has traveled by plane to many places we take him for adventures, he inspires me to keep trying to be the best mother that I can possibly be to him. He has attended business meetings with me when I didn’t have care and we have done a lot of hotel camping over the years . Let me tell you this is a creative endeavor taking blenders, prepared foods in containers to heat up at the local gas stations along the way for trips and to educational events. I used to take him to my haircutting and coloring classes because I didn’t have care. He is well experienced over the years. I have no complaints. You really find out what you are made of when you have to continue to strive to live your life. Carson would rather walk and talk but since he can’t he just goes with it.
Educationally speaking, the teachers over the years for in home schooling and traveling to the school two days a week are great for social experiences and interaction. I would especially like to thank the phsyical and occupational therapists that have made his bed, chairs for positioning and the artful way of adaptive seating and contraptions that help him feel more comfortable during his day. Again, all this is made possible with the best care possible through family. Thank you Todd for being the best step father Carson could possibly have and if Carson were able to speak he would say, “thanks Toddy for singing to me in the morning and making me my special breakfasts.” Carson would also say, “thank you to Annie who has been with me for almost all of my life from the very beginning, I love you.” He would tell, “Terri, thank you for your inspirational beads and positive influence over him and her exciteable ways.”
Thank you to my daughter for being a special sister to carson! Carson gets excited to hear her voice on the phone. He giggles and laughs when she calls him “carsy bear”. To my few close knit friends that have been there through the years and especially my mother Linda Yurchak along with her husband, John, I thank you for your support.
Kimberly Acworth
Proudly, mother of Carson G McCord
