My heart pounded in my chest as I clicked on her email response. “Yes, I was your foster mother, and I loved taking care of you,” it said. It was the start of our relationship, one that helped me piece together my past and find closure.
I’ve been legally blind since I was five months old. From the time I was very young, I knew I was different. But I couldn’t fathom the magnitude of the challenges I would face throughout my life.
I began attending a residential school for the blind and visually impaired when I was merely three or four years old. It was there that I learned daily living skills as well as reading, spelling, and math. The school worked with me to help me learn how to make the most of the vision I still had.
At the residential school for the blind and visually impaired, questions about the cause of my vision problems didn’t come up. Perhaps that was because I was still so young and because all of my classmates also had vision problems. Having sight limitations at the school was normal.
By the time I was in the third grade, my parents had gotten a divorce, and my mother decided to put me into a local public school. All the other kids in my third-grade class were “normal”. Sure, there were kids who needed to wear glasses to make their vision better, but none of the students were legally blind. None of them could relate to the severity of my vision impairment.
My classmates began to ask questions about the cause of my vision issues. I don’t remember being curious about the cause of my vision loss up until this point myself. I was told that I had fallen out of my pumpkin seat when I was an infant. So, I parroted this story to anyone who asked.
I started attending a local Catholic school in fourth grade. In the few years I attended the school, schoolwork was an incredible struggle for me. While I could still read regular-sized print at this point in my life, it took me a long time to read. I couldn’t see the blackboard, which led to me struggling the most with math. Though I had a vocational rehabilitation counselor who would work with me for an hour or so every week, attending a regular private school was simply not working out for me.
In addition to academic struggles, I struggled socially as well. Most of my classmates were civil to me, but I didn’t have many friends. I was also teased by some of the kids.
I went back to the residential school for the blind and visually impaired when I was in eighth grade. It was a bit of an adjustment at first. Most of my classmates had been with each other for years, but it didn’t take long for me to begin making friends and feeling like I fit in.
I don’t recall at what point it was exactly, but as I grew older, the story about me falling out of my pumpkin seat stopped making sense. At that point, I was told that I was a survivor of Shaken Baby Syndrome.
What is Shaken Baby Syndrome?
Shaken Baby Syndrome (also known as Shaken Impact Syndrome, inflicted head injury, abusive head trauma, and Whiplash Shake Syndrome) is a serious brain injury that results from the deliberate and forceful shaking of an infant or toddler. Shaken Baby Syndrome is a form of child abuse, and it can result in permanent brain damage and death. Serious brain damage or death can occur as a result of as little as five seconds of violent shaking.
Babies have weak neck muscles and soft brains. When a baby is violently shaken, her brain repeatedly hits her skull, which causes bruising, swelling, and bleeding in the brain. A caregiver or parent often shakes a baby out of anger or frustration, typically because a baby won’t stop crying.
While Shaken Baby Syndrome is most common in children under the age of two, it can affect children up to the age of five. According to the National Center on Shaken Baby Syndrome, Shaken Baby Syndrome is the leading cause of death by physical abuse in the United States; 25% of shaken babies die. Additionally, 80% of shaken babies struggle with lifelong disabilities.
Immediate signs of Shaken Baby Syndrome include lethargy, irritability, not smiling or vocalizing, rigidity, difficulty staying awake, decreased appetite, vomiting for no apparent reason, breathing difficulties, seizures, coma, paralysis, body tremors, and unequal pupil size. A baby who has recently been shaken may also have grab-type bruises on her chest or arms, broken bones, an inability to lift her head, or an inability to focus her eyes or follow movement. If your baby has any of these symptoms, it’s important to seek immediate medical attention.
Survivors of Shaken Baby Syndrome may struggle with lifelong problems, including permanent partial or complete blindness, intellectual disabilities, behavioral issues, learning disabilities, developmental delays, hearing impairment, speech difficulties, seizures, or cerebral palsy.
Learning the Truth
I was one of the lucky ones; I survived Shaken Baby Syndrome. My abuse was perpetrated by a caretaker of mine, whom I will call Jamie*.
Jamie told me that I was often sick as a baby and had colic. Jamie revealed to me that they had shaken me in order to get me to stop crying. Jamie told me I had undergone surgery to remove the blood that had collected in the back of my eyes as the result of the shaking. However, the shaking had permanently damaged my optic nerves. I was diagnosed with the eye condition optic atrophy, the deterioration of the optic nerve, the nerve that carries information from the retina to the brain. Jamie told me that I developed meningitis while in the hospital and that I had to stay in the hospital for a total of six weeks.
I was instructed to tell anyone who asked about the cause of my vision problems that the meningitis had caused it. I was told that if I told people the truth, they would think that I was a “bad baby”. It was impressed upon me throughout my childhood that I should not tell others the truth about my eye condition; this created an incredible amount of shame, shame that I still struggle with today at the age of 39.
Unfortunately, the notion of me being a “bad” child continued throughout my childhood. I feel like I became Jamie’s scapegoat–I was always the one who was messing up somehow; nothing I did was ever good enough. I was constantly compared to my fully-sighted sibling who seemed to be perfect in Jamie’s eyes.
I eventually learned that I had been placed in foster care temporarily while Jamie underwent counseling. I wasn’t provided any details of the foster care situation, but I often wondered if I would have fared better had I not been returned to Jamie.
Throughout my teen years, I had many questions: what was my foster home like, who fostered me, what was my foster family like, did I suffer any other injuries due to the physical abuse, and why didn’t my caretaker reach out for help if they needed it? Would I ever know the whole truth about what happened to me? It seemed like nobody who knew the details of the situation wanted to talk about it. It was important for me to keep the peace, so I wondered about my situation in silence.
When I went off to college, I began telling people the truth when they asked me about my eye condition. “No, I wasn’t born with it. It was a result of Shaken Baby Syndrome.” But every time I admitted the truth, I felt a tremendous amount of shame. Logically, I knew that babies aren’t inherently good or bad, but the years of being told that people would think I was a bad baby if I dared tell them the truth had me convinced that I was guilty–that I deserved what happened to me.
In the summer between my freshmen and sophomore years of college, I attended a local support group for women. There, I met an amazing woman, whom I’ll call Kathy*. She became a dear friend. When I told her about my situation, she said she knew a couple who fostered in the area. Kathy was prominent in the community; she had a lot of important connections. She was able to get me the email address of the foster mother, whom I’ll call Bonnie*.
I sent Bonnie an email telling her who I was and inquired if she had fostered me.
My heart pounded in my chest when I clicked on her response. I’ll never forget her first line, “Yes, I was your foster mother, and I loved taking care of you.”
I’d found another piece of the puzzle. Would Bonnie be able to help me fill in more missing blanks?
Bonnie and I began writing each other letters through the mail. I always looked forward to receiving her replies. I loved hearing her memories of our time together. She was providing me invaluable information about my past.
Bonnie told me that I loved the piano, even as an infant. She’d sit me on her lap and let me poke at the piano keys. The memories she shared with me made me sound like a darling infant, not one who was bad or deserved to be abused.
In an attempt to find out more about my past, I tracked down the two-decade-old newspaper article they had run about my situation as well.
Putting together the information at my disposal, I learned that I did, in fact, have other injuries caused by the shaking. Not only did the shaking irreparably damage my optic nerves, either one or both of my arms were broken, my breastbone had been broken, and I may have temporarily lost my hearing. After my eye surgery, I developed meningitis and spent a total of six weeks in the hospital.
Unfortunately, my eye condition is degenerative. I have lost a significant amount of vision in both eyes over my lifetime. There’s no way to know when or if I will go completely blind. It’s a terrifying prospect I try not to think about.
My foster mother and I have since lost touch, but I will always be thankful to her for keeping me safe in the months after my release from the hospital while my caretaker received some much-needed counseling. I’m also thankful to Bonnie for helping me learn more about my past. I’m not sure I will ever know the entire story about what happened in my first year of life, but my relationship with Bonnie helped me find some closure–something I’d desperately been seeking for years.
Preventing Shaken Baby Syndrome
I’ve heard people joke that you shouldn’t shake babies, but as you can see, Shaken Baby Syndrome is no laughing matter.
If you are a parent or caretaker of an infant or toddler and feel yourself becoming overwhelmed, frustrated, or angry, there are steps you can take to prevent Shaken Baby Syndrome.
First, recognize that crying is normal for babies. An infant who needs constant care can take its toll on you physically and emotionally, and even the most patient people can get stressed out or overwhelmed taking care of a baby.
If you feel yourself becoming overwhelmed, frustrated, or angry with a crying baby, put the baby down in a safe place like her crib and walk away. It is okay to let the baby cry, but check in on her every 10 to 15 minutes to make sure she is okay.
Second, managing stress will help you be a better parent or caretaker. Exercising, journaling, talking to a family member or trusted friend, and breathing exercises are ways you can manage stress. Try to take some time for yourself once a week to do something you enjoy.
Third, ask for help if and when you need it. There is absolutely no shame in asking for help when you need it. Make a list of people you can call for support when you need it. If you need a break, ask a trusted family member or friend to watch your baby for you for a few hours.
They say it takes a village to raise a child. Don’t try to do it all alone. Rely on your support system of neighbors, friends, and relatives to help you raise your child. Community organizations, such as churches, daycares, schools, and social services may also be helpful resources.
*All names have been changed to maintain anonymity.