Stories from Victims of SBS
Since 2000, the NCSBS has been working toward preventing babies from being injured or even killed from injuries sustained through violent shaking. Annually, thousands of families around the world experience the tragedy of shaken baby syndrome. Some face the loss of their newest family member, others express gratitude that their baby lived to fight another day. ALL are left facing the challenge of moving forward.
Listed below are the families of the victims of SBS who courageously share their stories of joy, heartbreak and hope. Click the buttons to meet them and discover their journeys.
Meet Austin
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by Brian Replogle, Uncle and Adoptive Father
Fifteen years ago, on December 7, 2000, my 2-1/2 year-old nephew Austin was shaken to near death at the hands of his biological mom’s boyfriend. That was a devastating and truly life changing day for Austin and our entire family. The days and weeks to follow were a blur. It was, and still is today, hard to imagine and understand the evil that had struck our family. How could someone hurt an innocent, loving 2-1/2 year old child?
Prior to Austin being shaken he was a walking, talking, playing two-year-old. He was able to use two hands to play with his trucks and cars; he watched cartoons on Saturday mornings snuggled up in my lap. He was a fixture in our home on weekends, and I wouldn’t have had it any other way. He was happy and loved. He was a normal, typically developing toddler.
Following his abuse, he spent two and a half weeks in a coma at Memorial Hospital in South Bend. Doctors had little hope of his survival, but wouldn’t let us give up hope as a family. His brain swelled, cutting off oxygen and blood flow to his young and fragile brain. They placed a cerebral fluid drain and pressure monitor to relieve the pressure that was building. They did CAT Scans regularly to monitor the damage. By the grace of God, he began to show improvement, he was taken off of life support just before Christmas 2000 as he regained consciousness.
His first and only word was “hi,” and he said it to everyone, over and over again. “Hi” is the best greeting I can ever imagine.
They placed a cerebral fluid drain and pressure monitor to relieve the pressure that was building. They did CAT Scans regularly to monitor the damage. By the grace of God, he began to show improvement.
Austin’s entire right side of his brain is now dead. It heavily affects the left side of his body.
After being in the Memorial Hospital Pediatric Intensive Care unit for over a month, Austin was transferred to St. Vincent’s Children’s Specialty Hospital (now Peyton Manning Children’s Hospital) in Indianapolis, where he would receive intense rehabilitation for speech, physical and occupational therapy over the course of nearly four months. I was blessed to work for a family owned company that never questioned the time off I took to travel back and forth from Indianapolis to be there with Austin, to talk to the doctors, nurses and therapists so I could learn as much as possible about his medical condition and his future needs; or while we took foster parenting classes in record time, so we could be certified when he was released from the hospital on March 16, 2001. We just missed that date by two weeks, so Austin was placed with a different foster family while we awaited the official word from the State.
Over the past fifteen years, Austin has put in thousands of hours of therapy to “relearn” the things he had learned and mastered prior to his abuse. He also had to learn to compensate for the deficiencies his body now had from the brain injury. Austin had to learn to talk, walk, eat, play and even laugh again. He had to learn that he had a left hand, a left cheek, a left ear, a left leg; he was literally ignoring his entire left side as if it didn’t exist at all. He had to build strength and confidence in his every day abilities. He was using a wheelchair that others had to push because he only had use of one hand and one leg. They had to fit both of his feet and legs with orthotic braces to help stabilize his gait when he was attempting to learn to walk again. They had a supportive splint/brace for his left hand. He had a helmet to protect his healing brain. Austin had gone from 2-1/2 years old to an infant again. He had a feeding tube placed while he was in his coma so they could keep his body nourished.
Over the years, Austin has had numerous orthopedic surgeries to help him compensate and or overcome his physical challenges. He has developed permanent hamstring pulls in both legs, simultaneously, causing extreme pain every time he attempted to stand, let alone walk. Thus, he had bilateral hamstring lengthening surgery two years ago. He has fallen down stairs and broken his right arm, his only useful arm. He struggles to maintain balance and has tripped and broken his left arm. He has peripheral blindness in his left eye, he sees nothing from the left until it is nearly dead centering in front of him; this has caused him to have many collisions with wall corners and doors over the years, but he has also learned to adapt and overcome. Just recently in October 2015 he had a major reconstruction of his left hand and wrist as they ‘fuse’ the bones and lock his wrist in a straighter, more stable position. This will help in several manners, protecting his wrist joint that was previously exposed and open to major fracture should he fall and land on it, helping him/us to physically be able to put his coat sleeves, sweatshirts and gloves or mittens on his hand, and it will help cosmetically as his hand won’t have a completely deformed look to it.
He is 17 years old now, a junior in functional skills (special education) classes. He struggles every day with depression and extreme anxiety that are common with traumatic brain injuries. Without medication, he would have non-stop seizures disrupting his life and potentially causing irreparable harm to his already damaged brain. He does not drive a car like his typically developing peers, and he can barely walk. No one is asking him to the prom and he’s not trying out for the basketball team. He has typically developing peers who care about him, who have taken it upon themselves to be his friend and mentor within the schools he has attended. Austin has a way of breaking down the walls people put up when someone who is different is around. Austin makes an impact in someone’s life every day. He has inspired two collegiate club-hockey teams (Notre Dame Club Hockey and Holy Cross College Hockey) to adopt him, lift him up and honor him with his own hockey game; “Austin’s Cup” has its very own traveling trophy bearing Austin’s name. The teams have used this game to help raise $1500 over the past three years for CAPS-Child and Parent Services of Elkhart County in Austin’s honor. He makes new friends all over town, every day, with his infectious smile and constant happiness.
Austin doesn’t know how to give up, to stop trying. He doesn’t know that life isn't this hard for everyone. He doesn’t know that he can’t do something. He just knows how to be happy and loving. I have taken him to the driving range and taught him to hit golf balls with one hand, he rides the on back of my motorcycle, he plays Xbox and Wii, and can manage an iPad and computer as well as anyone. He cannot read or write, but can memorize movies line for line and scene for scene after only seeing the movie two or three times.
Austin doesn’t know how to give up, to stop trying. He doesn’t know that life isn't this hard for everyone. He doesn’t know that he can’t do something. He just knows how to be happy and loving.
He just wants to have some independence, to be able to make simple decisions for him, without constant assistance, input and supervision from the many caregivers (parents/family, teachers, therapists, doctors, social workers) he has in his life.
Not a day passes that I am not reminded of that fateful day 15 years ago. There is no closure for Austin or our entire family, there is only moving on and making an effort to do good with the tragedy at hand. But we are the lucky ones, as nearly 25% of all shaken babies die each year. We get to wake up every morning to a “Good Morning, I love you!” And every night when we lay him to rest another “Good Night, I love you!” And at the end of the day, that’s what matters most for Austin and our family.
Meet Grayson
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by Danielle Ellison
My son Grayson was born on June 23, 2014. He came into the world happy, healthy, and beautiful. The summer went by fast and before I knew it my maternity leave was over and I had to return to work. With my son from my first marriage, and Grayson’s father had three children from his first marriage we had a total of 5 children. The oldest was 9 at the time, and Grayson was our youngest at 8 weeks old.
The presence of the violence Grayson was enduring arrived the day after my first shift back to work. I was changing his diaper and when I lifted his leg to slide the diaper underneath him he let out a blood curdling scream. I was startled, confused, and clearly concerned. There were no marks, no bruises, nothing. Grayson had an appointment already scheduled for the next day. The doctor did his two month well child exam and Grayson, he looked amazing. He was growing at a healthy rate, and despite his spit up problems, he was gaining weight well. I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. Again, he let out a blood curdling scream when she moved his leg. My older son had just gotten over hand, foot, and mouth, and the doctor felt very confident that the reaction we were seeing was from joint pain caused by either Grayson fighting off hand foot and mouth, or caused by a growth spurt. We went home and the next day the doctor called to check on Grayson. His leg seemed a bit improved that day. They asked us if I wanted to bring him back in that day, and I decided to give it one more day to see if it was continuing to improve, and it did continue to improve. I still wonder how differently things may have gone had I taken him in that day.
I told her about his reaction to me grabbing his leg during the diaper change, and she examined him. Again, he let out a blood curdling scream when she moved his leg.
That following Saturday, Grayson’s father and I had plans to go to dinner. I returned home to the typical chaos and laughter of the 4 older children. It was then that Grayson’s father informed me that our son had only eaten about 3 to 4 ounces that day, he usually ate that in one feeding. I checked his temperature and it was normal. I tried several times to feed, only to be met with fussiness and refusal. I informed my mother of the trouble we were having feeding Grayson and let her know that if he still hadn’t eaten by the time we got back, I was going to call the doctor. When we returned from dinner Grayson still had not fed, and I spent the next two hours trying to get him to eat. I decided to take him to the emergency room. The doctors examined him. Yet again, he looked amazing. “He looks great, great color in his skin, very alert. Could be a result of the colic. Let’s try and get him to take some food here,” the doctor said. At that time, we believed colic was behind his occasional fussiness. After an hour we finally succeeded and Grayson slowly took 2 ounces. We were sent home with a handout on newborn feeding difficulties.
After that, feeding difficulties became a regular battle while I was gone, only vomiting soon began to accompany it. In the following three weeks we attended another doctor’s office visit and another trip to the emergency room. The final trip to the emergency room was prompted by vomiting, a low-grade fever, and what the doctors called a “full” fontanelle. They ran some blood tests on that visit, but didn’t feel any other tests were necessary. We were instructed to follow up with his pediatrician the next day. At this point, I was extremely concerned. Grayson vomited again that evening and again in the morning. When we arrive at the follow up appointment, I was terrified that the doctor was going to confirm my worst fear, that Grayson had meningitis. Given that he was extremely fussy, had the low-grade fever, was vomiting, and a slightly bulging fontanelle she did in fact recommend that we admit him to the hospital and do a spinal tap to check for meningitis. Panic set in. The thought of losing him devoured me in a matter of seconds.
When we arrived the first thing they did was take a blood sample for testing. After reviewing those test results the doctor decided to do an MRI before we continued with the spinal tap. It was this decision that finally unveiled the monster hiding in the shadows. The doctor brought me to her desk, and showed me the images they took of my infant son’s brain. A massive accumulation of blood was pressing on my 13-pound son’s brain, and it was only the beginning. We were transported to Doernbecher Children’s Hospital where we were met by about a dozen doctors as we were rushed into the pediatric intensive care unit. X-rays were ordered, and uncovered 10 bone fractures, all various stages of healing. My eyes zoomed in on the right femur fracture. My God, how did I miss that? Grayson had several more tests done, and after four days the doctors said the blood in his head and broken bones will heal on their own. With a full criminal investigation underway, and child protective services case opened, we were sent home. I took Grayson and my older son to my parents, while Grayson’s father and his three children remained at our home. We never returned to our house again. Three days after being released Grayson began having seizures. After another MRI they discovered that the bleed had evolved, and the seizures began to piggy back. One after another after another. We were again flown to Doernbecher where Grayson underwent brain surgery to remove the blood, and received a blood transfusion. That same day his father was arrested and charged with 12 counts of 1st Degree Assault.
It has been 14 months, and Grayson’s recovery has been nothing short of miraculous. His will to overcome and courage to survive has brought a new meaning to life for him, and for his family. I still look back on that month when Grayson was suffering in silence and wonder how a person could hurt someone so innocent and defenseless. I still ask myself what may have happened had I better known what to look for. It is something you never imagine happening to your children, and I wish I had had the knowledge I have now, then. We have been blessed with a miracle, and although Grayson’s future is unclear it appears promising. Thanks to a wide variety of resources made available to us, we have everything we need in place should any further hurdles present themselves. In the end, Grayson truly is a warrior and his gratitude can be seen in his smile, heard in his laughter, and felt by his heart.
It has been 14 months, and Grayson’s recovery has been nothing short of miraculous. His will to overcome and courage to survive has brought a new meaning to life for him, and for his family.
Meet Kyra
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Kyra was born on June 5, 2012. She was a healthy baby who was adored by her 2 year old big sister, Lexi.
However a few weeks after her mom returned to work, her dad brought 4 month old Kyra to the emergency room where her mom worked because she was having seizures. She was airlifted to St Mary’s in Rochester and was diagnosed with non-accidental head trauma also known as Shaken Baby Syndrome (SBS) or Abusive Head Trauma (AHT). Her dad was arrested after being interviewed by police and admitting that he had become frustrated with her crying and had shaken her. Kyra had brain surgery 4 days later and was released from the hospital after 8 days.
Since her release from the hospital, Kyra has made a remarkable recovery. She is developing on track, although she still has occasional seizures and processing issues. She is monitored by neurology and Neuro Ophthamology.
Kyra's mom filed for divorce & it was finalized in August 2013 and her dad's case went to trial in April 2014. He was convicted of felony malicious punishment of a child under age 4 and in July 2014 was sentenced to 57 months in prison. In September 2014, he lost his rights to both of his children after not attempting to complete his case plan from social services.
Kyra is the inspiration behind One Shake Is All It Takes which was started in May 2013 by her mom, Kelsie Kuyath.
Kyra's story re-published on this site with permission from Kelsie Kuyath and One Shake Is All It Takes. For more on Kyra, read her #VoicesOfAHT profile on the Lola's Hope website.
Kyra is the inspiration behind One Shake Is All It Takes which was started in May 2013 by her mom, Kelsie Kuyath.
Meet Taylor
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by Lindsey Scholar
Taylor Marie was born a "perfect" child. She had 10 fingers, 10 toes and was perfectly healthy. Her beautiful smile and sparkling eyes would brighten anyone's day. But that light in her eyes was dimmed on February 19, 2001, when she was shaken by her biological father. Within seconds, her life was changed forever.
That day had started as any other; I awoke, got ready for work, fed Taylor (who was 1 day shy of 2 months old), put her into her crib to fall back to sleep, and said goodbye to her biological father. This was a routine day for our family, this day seemed no different than any other. I left for a meeting at work, looking forward to be returning in a couple of hours. When I returned, I was met by her biological father outside our apartment building. "There is something wrong with Taylor" he warned. When I saw her, I knew immediately there was something drastically wrong with our baby. She was gray in color, her eyes were closed, and she was moving her head side to side, and her arms up and down, something I would later come to know as "posturing". She was also making very low groaning noises. We brought her to the nearest emergency center, approximately 15 miles away. Little did I know her doctor had already been called by the biological father, and he had been instructed to call 911, which he never did.
Taylor and I were flown by helicopter to the nearest hospital that could address Taylor's ailments. At this time, I still had no idea what we were dealing with. All I knew was that this was VERY SERIOUS.
...this day seemed no different than any other. I left for a meeting at work, looking forward to be returning in a couple of hours. When I returned, I was met by her biological father outside our apartment building. "There is something wrong with Taylor" he warned.
Taylor underwent a craniotomy that day, to relieve pressure on her brain that was being caused by a collection of blood outside the brain, or, subdural hematoma. According to her surgical report, when her skull was opened, blood shot out approximately 12 inches due to the extreme amount of pressure in her head. More than half of Taylor's brain would die that night, due to a stroke during surgery. That was also the night I learned my daughter had been the victim of a non-accidental brain injury.
Taylor was in the hospital for 3 weeks. Those weeks were filled with uncertainty, worry, and fear. They were filled with questions: from doctors, from investigators, from social workers. And more questions, from family, from friends, from myself. Looking back, I see bits and pieces. I see a blur of emotion and snapshots from the worst time in my life. Something an innocent child should never have to endure. Something that never had to happen. Something that could have been PREVENTED.
Taylor is now almost 15 years old. She has reached the developmental age of approximately 18 months - 2years. She has diagnoses of hydrocephalus, cerebral palsy, developmental disability, intellectual disability, and osteoporosis. She uses a manual wheelchair to move around, and requires physical assistance to go anywhere. She requires 24 hour care, 7 days a week. She can never be left alone. While I try to "never say never", it is safe to say she will never drive, never attend college, never get married. She will always depend on others to care for her, although she is able to help with some of these activities. We never will know what her future held for her when she was born....that was stolen from her, in a few seconds, because someone who was entrusted to care for her lost control. For us, a few seconds changed our lives forever.
But I can't finish there. Taylor's life is not all sadness and pain. Her smile has returned-that smile that lights up a room as soon as she enters. She is an amazing individual with her own interests....her own thoughts....her own feelings. She has friends, she is active in adaptive activities, and she torments her little brother just as any big sister should. Her life has a purpose, it may be different than I intended for her when she was born, but every day, I see that purpose shining through. And we hope, that, someday, we will no longer see innocent lives being changed....or lost....by an act that is can be so easily prevented.
The National Center on Shaken Baby Syndrome is so vital to the prevention of Abusive Head Trauma, but they cannot do it alone. They need YOUR help too. Please donate, if you can, so they can continue the wonderful and much needed work they do to protect babies and young children.
Lindsey Scholar
Mother to Taylor Marie Scholar, Abusive Head Trauma Survivor
MN
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