"Thank you for calling the National Center on Shaken Baby Syndrome. This is Marisa. How may I help you?"
"Hi, my name is Jackie*. My son, Corbin*, was shaken and is in the hospital. I need help."
This phone call was the first I ever took from a victim's family member in my role as the Information and Research Specialist at the National Center on Shaken Baby Syndrome. I knew it was in my job description to help victims and their families find resources; I just never anticipated anyone calling me in full crisis mode needing assistance immediately. As the first-line of communication with families and survivors, it is my job to field calls, listen to their stories, validate their experience, and help connect them to local resources in their area. Jackie was my first introduction into this role and I was thrown from the frying pan right into the fire.
As I listened to Jackie explain the circumstances of her son's abuse, my heart dropped into my stomach. As a mother of four children I couldn't fathom the loss of control and fear Jackie must have been experiencing. As mothers we have to trust so many people to help us raise our children and every day you hope against hope that the person caring for your child loves them as much as you do. Sadly, through no fault of her own, Jackie had put her trust in the wrong person -- an unrelated male who was living with her family at the time of the abuse.
No one ever wants to think someone might hurt their child, however the National Incidence Study of Abuse and Neglect reports that children living with a single parent who has a live-in partner are 8 times more likely to be maltreated in one way or another, are 10 times more likely to experience abuse, and 8 times more likely to experience neglect. Another study done by the University of North Carolina shows that maltreatment is most common in homes with a stepfather/boyfriend/unrelated male, with 80 percent of the maltreatment occurring between birth and age 4.
Jackie had received our phone number from an associate whose child was also a victim of this form of child abuse, which is the leading cause of injury and death in infants. Jackie was looking for the woman who had occupied my position for 17 years prior to me and instead found me, a total shaken baby syndrome/abusive head trauma neophyte. In that moment, I felt ill-equipped to assist Jackie, but I was bound and determined to help her. I took detailed notes of everything Jackie had told me and called on my previous experience as a caseworker and my social work training to ask her the right questions.
I took all of my questions to my supervisor, other team members, and even the woman who had left the Information and Research Specialist position a few months prior. She said she had never had a mother call her while the baby was still in the hospital being treated for their injuries. Jackie's case was a first for my organization. I called the hospital social worker and spoke with her about Jackie and her son. They lived several hundred miles away from the children's hospital where Corbin was being treated and as a single mother she didn't have the gas money to get back and forth every day and purchase meals for herself while she was there. The hospital social worker is the true hero of this story as she arranged a closer place to stay for Jackie, used hospital philanthropy funds to help Jackie pay for her meals, and arranged resources and care for Corbin after he was released from the hospital. Jackie didn't know to ask for all those resources or that they even existed, but I did.
Shaken Baby Syndrome
Shaken Baby Syndrome (SBS) is a form of abusive head trauma (AHT) that occurs when an infant or young child is violently shaken or shaken and impacted against a hard surface. This can cause severe brain damage and even death. Approximately 1,200 to 1,400 children are injured by shaking or shaking and impact every year in the United States. An estimated 25 percent die and 70-80 percent have lifelong neurological and/or development deficits. A child is shaken and abused every 6 hours.
The long-term effects of shaking can be mild to severe. Injuries can range from learning disabilities, motor/cognitive difficulties, blindness, cerebral palsy, and/or paralysis. Corbin was one of the lucky third (1/3) of all victims whose injuries from shaking are mild. He is not blind, is mostly keeping up with his age group for his motor skills development, but still suffers from occasional seizures.
Corbin was just two months old when he was shaken. The majority of shaken baby cases are seen in children less than one (1) year old and most are younger than six (6) months old. Corbin had to have emergency brain surgery to treat the subdural hematomas forming in his brain, but did not suffer other injuries. Some of the injuries that are caused by shaking a baby include bleeding on the brain and the eyes, brain swelling, rib fractures, skull fractures, and some long-bone fractures. While not diagnostic of abuse, the combination of these injuries is seldom seen in other illnesses or trauma. Doctors liken the brain and eye injuries in babies who have been shaken to those seen in high velocity impact car crashes.
Once Jackie realized Corbin was going to heal from his abusive injuries, she expressed to me that one of her biggest fears was the financial cost it was going to take on her, something that can be very daunting to any parent, but especially a single parent earning all of the income for the family. Financial costs due to a child being shaken and injured can include costs for hospitalization, doctor's visits, physical and occupational therapy, special education, and specialized equipment like wheelchairs, wheelchair accessible vehicles, hospital beds, and other medical equipment. Other financial burdens to a family are lost wages due to missing work caring for a child who has been injured through abuse.
Studies have shown that the estimated total medical cost associated with SBS/AHT in the first four (4) years after diagnosis is about $47,952. That's an estimated medical cost (not counting all the other costs) of about $12,000 per year, when according to the US Census Bureau 2014 Annual Social and Economic Supplement, the mean household income in the United States is $51,939. Medical costs due to a shaking injury account for about 24 percent of an average family's total income for a year. Shaken Baby Syndrome affects every citizen because the economic and societal cost of SBS/AHT has been estimated to be approximately $16.8 billion annually in the United States.
We can do better by our children.
Child Abuse Prevention Month
Every April, parents and professionals come together to raise awareness about child abuse during National Child Abuse Prevention Month. Around the country different communities get together and try to educate parents and the public about preventing child abuse. Like all incidences of child abuse, the abuse that Corbin suffered is 100 percent preventable.
Unfortunately, child abuse and neglect statistics in the United States are staggering. According to research published in the Journal of Child Maltreatment (2014) five (5) children die every day in the United States of child abuse and neglect. That's roughly a fourth (¼) of your child's elementary school class. More than 70 percent of children who die as a result of child abuse and neglect are two (2) years of age or younger. More than 80 percent are not yet old enough for kindergarten. And around 80 percent of child maltreatment fatalities involved at least one parent as a perpetrator.
Resources for Families
Parents who abuse their children are not usually bad people. Most of them don't set out that day to abuse, or even kill, their children. Most parents who abuse are those who are overly stressed, feel helpless, no longer have the ability to cope, have weak support systems in place, or are not educated about the dangers of abuse. Many child abuse experts highly recommend that new parents take a parenting course before their child is born to learn coping strategies and learn from other parents' experiences. "The more a parent understands and is prepared to handle the challenges of caring for a new baby, the less likely a parent will react in frustration by shaking or injuring the baby," says Ryan Steinbeigle, executive director of the National Center on Shaken Baby Syndrome. Parents should ask their child's pediatrician for a referral to a helpful organization for parenting courses.
After I took that call from Jackie in 2014, I spent about a year researching the various resources that are available to SBS/AHT victims and their families. I researched national and state-wide resources for victims of crime, those with disabilities, support groups, assistance, advocacy, therapy or medical resources, and support specifically targeted for parents and siblings. Many of these links to these resources can be found on our website under the new Family Resources tab . You can find national resources and resources specific to your state on this page regarding disabilities, support, and crime victim assistance.
There are many other organizations who are working toward the eradication of child abuse who are a great resource to families and the community. The Child Abuse Prevention Center has a tip sheet for parents specifically about surviving infant crying and preventing shaken baby syndrome. The American Humane Association gives several suggestions for parents, friends and neighbors, and what communities can do to help prevent against child abuse.
Two Years Later
I recently spoke to Jackie about Corbin's condition. Almost two years later I'm no longer a shaken baby syndrome neophyte and neither is Jackie. Corbin is doing well for now. They are able to keep his seizures under control but even his doctors are unsure how his development will unfold.
As happy as I am that I was able be a small part in assisting Jackie and Corbin in finding resources and making their path a little easier in the aftermath of his abuse, I wish I never had to talk to Jackie. I wish she never had to call me. I wish her son was never abused or injured. Shaken baby syndrome/abusive head trauma is 100% preventable. Child Abuse is 100% preventable.
Believe all children can be safe from harm... I do.
To learn more about Shaken Baby Syndrome/Abusive Head Trauma please visit dontshake.org
If you suspect a child is being abused, please call the National Child Abuse Hotline 1-800-4-A-CHILD.
*Names and Identifying Information have been changed to protect the confidentiality of survivors and their families.