|Shaken Baby Syndrome: Spreading Awareness, Saving Lives|
|Tuesday, 21 September 2010 21:08|
By Esther Franco
Sensational stories of child abuse and neglect have become an all too frequent feature of news reports across the country and in Fresno County. Despite these media headlines about extreme cases of child abuse and neglect, the public remains largely uninformed about the developmental status of children affected by this tragic problem. These stories do not capture the complexities and scope of child maltreatment (child abuse and/or neglect) and this is where local agencies can step in to help the public recognize and understand the connection between child abuse/neglect and other social problems such as poverty, violence or substance abuse. In particular, one of the most devastating forms of child abuse is Shaken Baby Syndrome (SBS), which accounts for the majority of severe head injuries in children less than one year of age. On average, 30 percent die and 70 percent live with permanent disabilities.
Child Abuse At Large
Investing in child abuse prevention efforts is not only the most humane investment; it is also the most cost effective. Treatment costs 100 times more than prevention. Nationally, almost one million children are confirmed victims of child maltreatment at a total estimated annual cost of $103.8 billion dollars. The cost of responding to the impact of child maltreatment is borne not only by the victims and their families, but by society as well. This amount includes direct costs such as hospitalization, mental health care, child welfare services and law enforcement. In addition, the effects of child maltreatment extend far beyond childhood into adolescence and adulthood which result in indirect costs such as special education, juvenile delinquency, health care, mental health care, adult criminal justice and lost productivity to society. A case of child abuse or neglect costs an average of $100,000 in California.
Shaken Baby Syndrome At Home
Shaken Baby Syndrome (SBS) usually occurs when an angry or frustrated parent/caretaker shakes a baby to stop him/her from crying. 75 percent are parents and 60 percent are males, i.e., father, stepfather or boyfriend. There are approximately 150 cases of SBS in California every year at an average cost of $500,000 per child and up to $1,000,000 per child in Neonatal Intensive Care Units. Children’s Hospital of Central California reports that of the 17 children who died from abuse/neglect in 2008, 14 showed symptoms or injuries consistent with SBS. An estimated $8,500,000 was spent to care for these 17 children. For every $10 spent on child abuse prevention, $1,000 is spent on intervention and treatment.
Symptoms of the Condition
It does not take much force to seriously injure a baby’s brain, and the effects can be devastating. In 30 percent of diagnosed cases, the child dies. Among the SBS survivors, 70 percent will live with permanent mental and physical disabilities such as blindness, paralysis, retardation, and seizures. Some children will suffer from all four of these afflictions and will never be able to walk, run, ride a bike, or play sports. The vast majority of victims’ immediate and ongoing medical care is covered by MediCal or California Children’s Services; unfortunately, most victims become foster children after they are diagnosed, so the state assumes responsibility for all of their needs.
Common injuries to babies who have been victims of SBS inlcude: head, neck, and spinal cord trauma, bleeding around the brain (subdural and subarachnoid hemorrhages), bleeding in the eyes (retinal hemorrhages), bruising of brain tissue (cerebral contusions), and tearing of blood vessels (shearing). Other injuries such as broken ribs, bruising, etc. may also be present.
Infants who have suffered any of the above injuries will obviously, and quite dangerously, not be able to communicate about their injuries. Some physical signs to watch for in infants are changes in overall mood/behavior, vomiting brought on by the change in pressure inside the head, respiratory problems, lethargy, and seizures. Your baby may also exhibit sudden changes in appetite, inability to focus his/her eyes, or a lack or reduction in facial expressions or vocal sounds.
It is equally important, however, to realize that no visible signs may be present. In truth, “grab” type bruises are rare indicators of SBS (although they may signify other trouble at home). If you suspect your baby has suffered an SBS episode, take him or her to the nearest emergency room immediately. The type of injury caused by SBS is similar to that of whiplash for an older child or adult. The injury will be consistent with an acceleration-deceleration type of motion. Additionally, seeking out an ophthalmologist may also be necessary as the types of retinal injuries caused by SBS are one of the most specific signifiers. SBS may still occur and may be easier to diagnose in toddler-age children. Their bodies are still developing, and may still be easily and permanently injured. However, toddler age children are more able to verbalize pain, and regressions in ability (such as verbal and cognitive skills), will be more noticeable. At this age, you may have also become comfortable with a teenage or other young adult providing babysitting for your child. While convenient, many teenagers haven’t developed the coping skills necessary to remain patient and calm with an infant or toddler and may be at risk for committing SBS. Make sure your younger babysitter is educated and has a genuine interest and love of children. Additionally, provide him or her with a protocol for what to do if the child(ren) won’t behave and the situation becomes unmanageable.
As a parent, if you begin to feel frustrated or overwhelmed while trying to take care of your crying infant, remember, no child has ever died or been injured from too much crying; they have, however, when a parent or other caretaker “loses” it. First, check to see the baby’s basic needs are met: feeding, burping, diaper change, discomfort (tight clothing, strong smells), and temperature. Second, try to engage in soothing activities with your baby: take him/her for a walk or car ride, speak in low, calming tones, or hold the baby securely against your chest and rub his/her back in soft, constant circles. Strive to be patient. Take deep breaths and count to 10. If you cannot stop the baby’s crying and need a break, take one. Wrap the infant securely in a blanket and place him or her in a safe, dark quiet room. Leave the room and call a relative or trusted friend who can watch over the baby and use that time to take a walk, drive, or engage in some other activity that calms you.
Our Community In Need
In 2009, there were 17,891 registered births in Fresno County. With estimates that vary between 25-50 percent, an alarming number of parents are not aware of the serious and deadly effects of SBS. It is estimated that the number of parents needing child abuse prevention education is between 4,473 and 8,946 each year.
Current law outlined in the California Health and Safety Code requires that hospital staff provide SBS information to new parents, but only if that information is provided to the hospital (H & S Code, Section 24522). There is no specification as to who will provide the information to the hospital or definition of the structure for doing so. In addressing this problem, part of the challenge is not only providing hospitals with new educational SBS Prevention materials, but also to look into implementing an SBS Prevention Program. A potential program such as the Dias Model (see below) would work by showing new parents a video about Shaken Baby Syndrome, providing parents with pamphlets about how to deal with infant crying, and asking them to sign a pledge, all before they leave the hospital.
A Model That Works
The Upstate New York Shaken Baby Syndrome Education Program is an evidence- and hospital-based parent education program designed to teach every parent in Upstate New York about the dangers of Shaken Baby Syndrome. Dr. Mark Dias created the program in December 1998, and over a 7-year period the program has resulted in, and sustained, a 50 percent reduction in the incidence of abusive head injuries in the region. The Child Abuse Prevention Center in Sacramento implemented what is now known as the Dias model in 2005, and their results showed a 31percent decrease in SBS related injuries and an 88 percent decrease in SBS deaths.
Current treatments available
Unfortunately, there is no existing comprehensive SBS Prevention Program in Fresno County. Child Abuse Prevention Councils are legislated in the Welfare and Institution Code section 18980 of the State of California mandating every county (58) establish a child abuse prevention council to carry out specific legislated functions within that county. The Fresno Council on Child Abuse Prevention (FCCAP) was chartered in 1981 and has been working to prevent and intervene in matters of child abuse and neglect within the Fresno community for the past 29 years. Their mission is to coordinate community efforts in child abuse prevention, intervention, treatment and education; to advocate for the special needs of abused children and their families; to actively promote communication between professionals in public and private agencies; and to encourage community support and awareness through educational programs.
The Fresno Council on Child Abuse Prevention (FCCAP) has been working to coordinate community efforts over the past year to research the impact of SBS in Fresno County and has successfully developed a collaborative committee: The SBS Prevention Committee. Through their expertise, dialogue and research, the committee has not only successfully substantiated the need for an SBS Prevention Program in Fresno County, but has also identified a comprehensive program to address the problem: the Dias Model.
The goal of the SBS Prevention Committee is to strategically create a multi-disciplinary collaborative, which will assist with the development, implementation and maintenance of an effective SBS Prevention Program for Fresno County. The program components of the Dias model are the most effective because they offer unique, one-on-one personalized education by trained nursing staff and/or an SBS prevention education specialist for parent(s) at the hospital. Six local birthing hospitals including: Reedley – Sierra Kings Hospital, Selma Hospital, Clovis – Community Medical Center, Fresno – Community Regional Medical Center, St. Agnes Medical Center, & Kaiser Permanente are among those that The FCCAP is currently working to coordinate efforts with.
In 2008, there was legislation to reduce SBS in California. SB 825 proposed to direct the Department of Social Services to implement a prevention program based on the Dias model in a select number of California counties in an effort to meet and exceed the reduction rates in New York. However, with the ongoing economic problems of the state, the bill was defeated.
FCCAP has taken the lead in creating and coordinating the SBS Prevention Program Project for Fresno County. To date, FCCAP has acquired an SBS simulator doll (pictured below), the Dias Model training materials, including DVD’s in English, Spanish and Hmong; and is in the process of creating personalized brochures, posters and DVD’s featuring SBS survivor Adam Carbajal.
The photo of the “Shaken Baby Simulator” doll from Realityworks, Inc. below demonstrates how just one thoughtless shake can cause permanent brain damage or death. The see-through vinyl head with illuminated LED lights indicate the damage to specific areas of the brain and has proven to be an effective and powerful education tool because approximately 60 percent of SBS perpetrators are male (biological fathers constitute the largest group, followed by boyfriends of single mothers), who may not realize just how fragile infants really are.
Planning for the Future
No issue is more critical for change than the prevention of child maltreatment. Preventing child maltreatment is both compassionate and fiscally responsible. An effective policy change would require a 180-degree shift in thinking – from policies that deal with abuse and neglect after they take place to policies that focus on preventing their occurrence. Our nation and our communities must embrace child maltreatment prevention in a more effective and meaningful manner, which means getting involved! Implementing a comprehensive Shaken Baby Syndrome program is just the beginning. In order to make prevention a priority, we must encourage leaders in our community to advocate and support programs and services for children and families. Ask your local and national lawmakers to keep and/or implement legislation to maintain and better support existing programs and services for those who have a role in protecting/influencing the lives of children.
Real and sustainable change can happen by implementing comprehensive, evidence-based, community-driven child abuse/neglect prevention strategies based upon each state and county’s needs.
About the Author: Esther Franco is the Executive Director for the Fresno Council on Child Abuse Prevention. She has twenty years of professional experience in leading and managing fund development and community relations campaigns for non-profit organizations located in the Central Valley. Esther is passionate about her work for the FCCAP as her grandmother was a foster parent and she learned about child abuse at an early age.
ADAM AND MARIA’S STORY
My name is Maria Alvarez-Garcia. This is the story of my precious grandson Adam Carbajal, who was a victim of Shaken Baby Syndrome, and suffered severe head trauma at the age of one. Adam was born on October 31, 2003, and like most grandparents, I thought he was one of the most beautiful babies in the world. The first year of his life flew by, and on November 7th 2004, we were excited to celebrate his first birthday. We never could have imagined the nightmare that was heading our way the very next day. My husband and I were at work when we received a frantic call from my daughter Mari, Adam’s mom, telling us that we needed to get to Children’s Hospital right away. She said her boyfriend at the time told her Adam had fallen and was acting funny. He had been babysitting Adam while Mari was at school. When we arrived at the hospital around 2:30 p.m., we had no idea what had happened. The doctors would not let us see Adam and they did not say very much. We were desperate to know what exactly had taken place, but the nurses just kept telling my daughter that Adam was having a severe seizure and that the medicines they were trying were not making it stop. They told her that if another medicine did not work, they were going to take Adam in for a CT scan of his head. For two hours, my daughter kept going back and forth from Adam’s room to the private waiting room to give us progress reports, because no one else was allowed to be with Adam except Mari and her boyfriend. Her boyfriend was there, supporting Mari the whole time, and I thought, “feeling” her pain.
Around 4 p.m. that afternoon the doctor decided to go ahead with the CT scan, and the results were devastating. My daughter came into the waiting room crying hysterically, saying that Adam had severe bleeding of the brain, retinal hemorrhaging, and that things did not look good. We were in total shock and disbelief. We kept asking ourselves, “Where could Adam have fallen from to cause so much damage?” None of our questions were answered. They told Mari that my grandson needed emergency brain surgery, but that he probably was not going to survive it. They told us to prepare ourselves for the worst because the injury was too severe. We were allowed to see Adam for only a minute before surgery so we could say “our good-bye’s”. I could not believe what was happening. I wanted someone to wake me up from this terrible nightmare! We starting calling our family to inform them, and like us, everyone was in total shock. We had just seen Adam the day before and he was perfectly fine; walking, crawling and doing everything a one year old does…and now, suddenly, he was fighting for his life. Words truly don’t exist to fully describe the state of shock, confusion, and disbelief we were all in.
Adam was taken to surgery and what should have lasted a half hour took almost two hours. When the neurosurgeon came out and informed us that Adam survived the surgery, we were relieved, but then he also said the damage was worse than they first thought. The doctor told us that his condition was still very critical and Adam would most likely not make it through the night. Her exact words were, “he is hanging on by a thread.” Adam was then taken to the Pediatric Intensive Care Unit where we waited anxiously for any news.
After a devastating night spent waiting for nothing—no news and no visitation—the next morning was even more overwhelming. Around 9:30 a.m., a very nice doctor came and asked to speak with my husband and I in a private room. It was there we were finally given the terrible news. She stated that Adam’s injury was non-accidental. At first I couldn’t even begin to comprehend this. “What do you mean?” we asked. She explained that they believed Adam was violently shaken and thrown against the wall. I could not believe what I was hearing. I felt like she kicked my heart and stomped on it over and over again. How could this be? She explained that because of the severity of the injury, Adam would be under the custody of CPS. She believed my daughter’s boyfriend was responsible, and that the story about Adam falling was inconsistent with the severity of the injury. She even went so far as to say that if Adam had fallen off a ten-story building, he would not have suffered that severe of an injury. No one was allowed to see Adam, but they made an exception for my husband and I because I was very clear that I was not going to move from his bedside; my Adam was going to need a lot of love and attention because of what he was going through. My daughter, also, was not allowed to be by herself with Adam (she was only allowed visits when a social worker was available), but she “lived” with us in the waiting room of the ICU as well. There was no way I was going to let Adam be alone when he needed us most. I did not move from his bedside because I wanted to be there “when he became an angel”. I did not want him to be alone when he died. Still, at this time, we had no reason to expect that Adam would live. And, as if all this weren’t enough, our family was just at the beginning of a long and horrible journey that has left deep scars on us all.
The authorities charged my daughter with failure to protect because they stated that, “she should have known her boyfriend was capable of doing this.” It’s heartbreaking that she had to fight harder for her rights as a parent than her boyfriend had to fight (at least at first) to stay out of jail. When it came to her boyfriend, my poor daughter was so confused and felt so guilty, we heard everything from, “he didn’t mean to do it” to “he didn’t plan to do it” to “this was his first time.” We heard all this and more as we began the criminal process, but for the time being, our primary focus was on Adam, who was alive, but had slipped into a coma.
Adam remained in a coma for about two weeks, and then little by little, with all our prayers and faith, he started coming out of it. I remember how I felt when I first heard him cry after his injury. It was like he had been reborn. I felt so much joy, I cried like I have never cried out of pure happiness before. It was amazing! He was transferred to the rehab facility to begin therapy, but at this point he was still blind and immobile. He started getting physical therapy and little by little his sight started to return. At this point we had already done everything CPS had asked us to do to get guardianship of Adam, including background checks, paperwork, etc. CPS had already told us my daughter was not going to get him back. We were under the impression that we were going to get him when he was released from the hospital.
The CPS social workers assigned to Adam’s case were wonderful to us. They were very caring and understanding of the pain we were going through. There was a point that Adam cried for almost a whole week and it was heartbreaking for me to watch. I kept asking myself, “What hurts him? What can I do to make his pain go away?” I would cry with him because I was so upset and trying my best to comfort him. Finally, the doctor came and told me that I might have to get used to Adam’s crying, because he was not in pain. She explained that the crying was probably due to the part of the brain that was damaged, and that he might not be able to stop crying. Blow after blow, I just couldn’t believe what I was hearing. Adam might cry for the rest of his life simply because he could not stop. We prayed again and again and finally, after crying for one whole week straight, he stopped. And, he started making other progress too. My grandson was doing so well that the doctor decided to release him right before Christmas, after almost two months in the hospital. We were so excited our little Mijo was going to be home for Christmas! Then, on December 21st, 2004, a day before Adam was to be released, our happiness was shattered when a woman claiming to be Adam’s foster mom showed up at the hospital. The confusion and terror just wouldn’t stop. What was going on? I immediately contacted the CPS social worker we had been dealing with previously and was shocked when she told us that because our home had not been inspected yet, they had to place Adam with a foster mom. I was horrified. Unfortunately, there was nothing we could do and when December 22nd came around, I was in so much pain I remember thinking that I wanted to die. What was Adam going to feel? To think? Would he think we had abandoned him? I was there by his side the whole time in the hospital and suddenly I wouldn’t be there when he woke, or when he cried. That just broke my heart into a million pieces. I could not control my pain. How could they put him with a stranger and not his own family?
It took four months, three foster moms and numerous phone calls to finally have my home inspected and Adam finally placed with me in April of 2005. After two years in my care, my daughter finally regained custody of Adam in early 2007. We then had to fight the criminal justice system to seek justice for Adam and his abuser. This was also the beginning of my realizing how much the justice system was failing all children like him. My daughter’s ex-boyfriend by this time was charged with PC 273D: Corporal Injury to a Child under the Age of 8. This sentence carries a maximum of six years in prison. But, he was allowed to remain free for a total of about two years and jumped bail more than once before finally being charged and arrested. On 03/29/07, he was offered a plea deal of six years in prison, which meant with good behavior and credit for time served, he would be out in about three years.
That’s when we started our fight. We went to the media, made fliers, visited and sent letters to State legislators, and we set up a website and email address to garner community support and put pressure on the judge to reject the plea deal. We also sent letters to the judge from each member of our family telling him how our lives, and most importantly Adam’s life, had been changed. We included videos of Adam before and after the injury. We, along with the public by now, made pleas for a longer sentence for Adam’s abuser. And our hard work finally paid off. On 04/20/07, the judge assigned to the case took the plea deal off the table, saying Adam’s abuser did not qualify for such a deal. Apparently, he had a juvenile record that included burglary, drug possession, auto theft and arson (which we did not know about at the time). Finally, we got two prosecutors who really cared about getting justice for my grandson and did whatever they could to help increase the sentence. They were very caring and fought very hard for Adam. We also became very close with the detective on the case, who stated that most child abuse perpetrators are never sentenced to any jail time.
Finally, on June 15, 2007 and with God’s blessing, the judge sentenced Adam’s abuser to the maximum sentence that California law allowed. He received 10 years in prison, but will only serve 7 ½ years. At the sentencing, he spoke and admitted (after denying for so many years that he was responsible) that he had hurt Adam. He also stated that he did not mean to hurt Adam. He apologized and said that he just “lost his cool” In truth, it did not matter to us whether he meant it or not, or whether he planned it or not. The fact of the matter is that he did it and no matter what, our precious Adam has paid the consequences of his actions. Nothing will ever bring our “normal” Adam back. And nothing will ever take away all the pain and sorrow we suffered because of what he did Because of the pain and anger I felt, and still struggle with, I have made it my goal to change the sentencing laws when it comes to child abuse. I do not want another family to have to fight for justice for their children like we did. I believe justice should already be there for them. Did you know that California Law does not take into consideration the extent of the damage that is caused because of child abuse for children less than 8 years of age? For sentencing purposes, the same charges apply whether they break a finger or cause brain damage like in Adam’s case.
I started calling California legislators, and sending them letters & pictures of Adam’s head and scar. After getting door after door slammed in my face, finally my efforts are starting to pay off. I received a call from Fresno County District Attorney Elizabeth Egan and met with State Assemblyman Michael Villines. The State Association of District Attorneys agreed to sponsor a bill on 10/23/07, as did Elizabeth Egan. Michael Villines authored Assembly Bill 1987 “Adams’ Law” on February 18, 2008. Together, we have joined forces to win this fight in the State Legislature. They have all been a wonderful means of support. We are now in our third year of this battle and have recently made some crucial progress. On June 29, 2010 we testified again in front of The State Senate Committee, who has killed the bill in the past because of prison overcrowding and the budget crisis. I am overjoyed at this time to report that our bill, AB 1280, passed the State Assembly and will now head to Governor Schwarzenegger for his consideration. Originally our goal was 15 years to life for any child abuse perpetrator, but we did have to agree to an amendment. Now, the bill will maintain 7 years to life, with the possibility of parole for an abuser. This means the only way a perpetrator may be released is through the parole board.
Even though there is always sadness in my heart that will never go away, I have become very involved in educating and preventing a tragedy like ours from happening to any other precious child. This is the only thing I’ve found that has helped me to heal at all. I have gone to speak about our tragic experience to young parents and to any organization that asks me to. I am happy to share my story so people and especially teen parents, like my daughter, will realize that this can happen to anyone. If one baby’s life is saved, then the sacrifice of my grandson’s injury was not in vain. I also share with audiences the warning signs of abuse. Now that we look back, there were a lot of signs of abuse in my daughter’s case. I am also proud to be a board member of The Fresno Council on Child Abuse Prevention Services (FCCAP), which has made Adam their poster child for Shaken Baby Syndrome (SBS). The FCCAP is now in the process of making educational brochures, promotional materials and DVDs using Adam’s story as an example of the severe consequences of SBS.
My grandson Adam is now 6 ½ years old. He is paralyzed on the right side, has epileptic seizures that will only worsen as he gets older, and that will require medication to control them for the rest of his life. He cannot walk, talk, or do any of the things a little boy his age can do. He has a “U” shaped scar on his head from the surgery and is missing a piece of skull that the doctors do not want to reset because they consider it too risky. We have to be very careful that he doesn’t hit that soft spot because any injury to that area could be fatal. His mentality is that of a ten to twelve month old baby. The doctors believe he has plateaued in development. In spite of all the struggles that he goes through daily, we are very blessed to have him with us. Even though he has severe disabilities that he will have for the rest of his life, he is the happiest and most loved little boy in the world. We also just realized that Adam is unable to cry. He feels pain and all the things we feel, but he shows his emotions/moods by his face expressions. My precious Adam is my strength and my inspiration. I am proud to say that by mutual agreement with our daughter Mari, my husband and I have custody of him again. My daughter Mari, Adam’s mom, unfortunately could not handle his disabilities, but she is still a big part of his life.
Please pass this story along and remember that faith and miracles do exist. Always remember to NEVER, EVER SHAKE A BABY. The results could be devastating. If you would like to join in our fight for justice for Adam and all children like him, please visit our Myspace page (www.myspace.com/justiceforadam), or contact the FCCAP.