1. Medical Aspects of Infant Abusive Head Trauma. 2. The Pennsylvania Shaken Baby Syndrome Prevention and Awareness Program and legislation

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1 Preventing Infant Abusive Head Injuries: The Past, the Present, and the Future Marie Killian RN, BSN Nurse Coordinator The Pennsylvania SBS Prevention & Awareness Program Points to Discuss 1. Medical Aspects of Infant Abusive Head Trauma 2. The Pennsylvania Shaken Baby Syndrome Prevention and Awareness Program and legislation 3. Pennsylvania AHT prevention plans for the future AHT vs. SBS What is Infant Abusive Head Trauma?

2 What is Infant Abusive Head Trauma? Infant Abusive Head Trauma is a violent form of child abuse that accounts for the majority (> 95%) of severe head injuries in children less than 1 year of age. What is Infant Abusive Head Trauma? The most common cause of mortality and long term disability due to child abuse. What is Infant Abusive Head Trauma? VIOLENT & CRIMINAL BEHAVIOR but NOT premeditated Identified in the 1970 s by two independent physicians Dr. Caffey & Dr. Guthkeltch

3 Nomenclature Abusive Head Trauma (AHT) Shaken Baby Syndrome (SBS) Shaken Impact Syndrome Infant Shaken Impact Syndrome Whiplash Shake-Injury Syndrome Non-Accidental Trauma (NAT) Battered Child Syndrome Abusive, Intentional, Inflicted Head Injury Incidence of Infant Abusive Head Trauma On any given day in the United States, four children under the age of five,, will die or be permanently disabled when they are shaken by a caregiver! 1,440 babies are injured & 300 children die in the USA every year from abusive head injuries. Profile of a Victim The average victim is: 4-6 months old More boys than girls

4 What is the Cause? Baby keeps crying & crying Caregiver is exhausted or stressed Caregiver gets frustrated or angry Caregiver loses control What Doesn t Cause AHT? AHT is NOT the result of: Bouncing a baby on your knee Rocking a baby Jostling in a car seat Accidental household falls or trauma Gentle or playful tossing in the air Western New York Demographics

5 How Much Shaking Does It Take to Injure a Baby? It takes SECONDS of VIOLENT shaking to sustain the severe injuries i seen in Infant Abusive Head Trauma. No amount of shaking is ever OK!!! What are the Consequences? 1/3 mild side effects 1/3 severe damage such as: Seizures Mental retardation Blindness Learning Disabilities Paralysis 1/3 Die

6 Unique Injuries of Infant AHT Classic Triad Brain edema Subdural hematoma/intracranial hemorrhage Retinal hemorrhages Shaken Baby Syndrome PLUS Rib fractures Skull fractures Metaphyseal-Epiphyseal fractures What Diagnostic Tools are Used? Exam and interview CT scans Skull radiographs Ophthalmology exam including pupil dilatation Photos and written descriptions Skeletal survey radiographs Examination of the home and re-creation of the injury events by the adult involved What are the Symptoms of a Shaking Episode? Symptoms vary from mild to severe & include: Difficulty with sucking and/or swallowing Decreased appetite Trouble with sleeping Irritability/increased fussiness/lethargy Vomiting Difficulty breathing/turning blue Change in level of consciousness Seizures

7 AHT Early and Late CT Scans Retinal Hemorrhages

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9 Tracking of Abusive Head Trauma Pennsylvania Childline (PA Department of Public Welfare) 1. Child Protective Services Law 2. Reporting of suspected child abuse is mandated for people who come in contact with children as part of their work (eg: Physicians, Social Workers, Nurses, Teachers, Medical Examiners, Daycare Providers, Law Enforcement) 3. Confirmed cases are documented by Childline and relayed to PA SBS Program. Tracking of Abusive Head Trauma Cases of Infant Abusive Head Trauma Since the Start of the PA SBS Prevention Program Year Cases Deaths Notes Central PA Central PA Statewide Statewide Statewide Statewide Statewide Statewide Statewide +

10 2010 Statistics 86 babies have been victims of AHT 54 boys (63%) & 32 girls (37%) Age range: Birth-2 years/11 months Injuries included: SDH, RH, Brain damage, & Skull fractures 7 babies died from their injuries (8%) Perpetrators: 81 were parents or paramour (94%) 3 babysitters (3%) 1 step sibling(1%) 1 unknown (1%) Demographics Research Published Demographics of abusive head trauma in the Commonwealth of Pennsylvania (Kesler, Dias, et al: Journal of Neurosurgery: Pediatrics 1: , May 2008) Most comprehensive population-based study of AHT injuries conducted to date The results suggest that families of infants with AHT have a significantly different demographic profile when compared to the general population The study results can be utilized by healthcare providers treating these infants as well as researchers implementing prevention programs Who are the Perpetrators? ANYONE! In Pennsylvania a we have found that the perpetrators are often but not always: age (teen/early adult) sex (male) marital status (single) socioeconomic status (poor) race (African American or Hispanic) educational level (less educated)

11 Something Needed to be Done... The only difference between those who shake their infants and those of us who don t is that we don t! The frustrations, anger, and even the rage, are the same! Mark Dias, MD, FAAP Pediatric Neurosurgeon/Professor Penn State University College of Medicine Milton S. Hershey Medical Center Who Should We Educate? 75% of perpetrators are parents and 60% of the parents are fathers or father figures Therefore, educational efforts need to target parents, especially fathers/father figures. Educated parents can be advocates for their children by sharing this information with everyone who cares for their baby! AHT: A Preventable Problem! Upstate New York SBS Prevention Program Women and Children s Hospital of Buffalo Has reduced incidence of Infant Abusive Head Trauma by nearly 50%!

12 Conclusions from the Upstate New York Study A coordinated and comprehensive program of hospital-based parent education can significantly reduce the incidence of abusive head trauma in infants (Shaken Baby Syndrome). Research Results Published Preventing Abusive Head Trauma Among Infants and Young Children: A Hospital-Based, Parent Education Program Dias et al,, PEDIATRICS, 115: e470-e477(2005) e477(2005) AHT Prevention in Pennsylvania May 2002: Dr. Dias began hospital-based education program in Central Pennsylvania as a pilot study at Penn State Milton S. Hershey Medical Center.

13 Pennsylvania Regions WESTERN CENTRAL EASTERN The SBS Law Pennsylvania Bill : The Shaken Baby Syndrome Education Act (Passed December 2002 with implementation September 2003) Pennsylvania Bill SBS education for parents of all infants born in Pennsylvania SBS information MUST be presented at the time of the baby s birth and be given separate from other education Materials should be easy to understand and be available in multiple languages Education must be provided free of charge to the patient Commitment statement is to be discussed prior to hospital discharge

14 The Dias Model for AHT Education... Key Elements of the Program: 1. Hospital-based: Presented at the time of the baby s birth 2. Universal: Given to ALL parents of ALL babies 3. Targets BOTH parents: Especially fathers and father figures 4. Delivered by health care professionals: Totally Nurse Driven 5. Multiple languages & formats: Verbal, written (9 languages), video, & poster formats 6. Information is provided separate from other education: Child abuse prevention needs to stand out 7. Parents voluntarily sign commitment statement: Affirms their participation 8. Keep it Simple: Easy to implement & easy to understand A National Model for AHT Prevention In May 2006, Pennsylvania became the first state t in the nation to have 100% of children s and birthing hospitals providing consistent shaken baby syndrome education to ALL parents at the time of their babies birth as per the Dias Model! AHT Prevention Around the World

15 Funding Pennsylvania Department t of Health (PA DOH) Centers for Disease Control and Prevention (CDC) PA Prevention Partners Pennsylvania Department of Health: Bureau of Family Health The American Academy of Pediatrics: Pennsylvania Chapter Suspected Child Abuse and Neglect Program (SCAN) Pennsylvania Child Death Review Team Pennsylvania Injury Community Prevention Group (ICPG) What are the Risk Factors? NICU babies Babies with special needs Multiples

16 What are the Risk Factors? Exhaustion Baby who won t stop crying Stress What are the Risk Factors? People with anger problems People with history of abusing adults Substance abuse (drug or alcohol): increases risk of infant abuse by 50% AHT is a perfect crime! 1. Children are easy victims They can not call 911 They can legally ll be with their attackers They can not defend themselves 2. The crime is easy to conceal 3. Mandated reporters often avoid, deny or fail to recognize the crime

17 What Raises a Suspicion of Abuse? Inconsistent stories from the same care provider or between people Stories that change over time History containing no mention of trauma in the presence of traumatic injuries Stories that are inconsistent with the injury or the developmental age of the infant Delay in seeking medical care History of a young sibling inflicting the injuries Comments by alleged perpetrator Differential Diagnosis and Common Defenses Birth Trauma: 1. Cranial birth trauma more common in urgent and assisted deliveries (vacuum or forceps) 2. Retinal hemorrhages in up to 40% of newborn infants More common after vaginal and assisted deliveries Most commonly at posterior pole, dot/blot hemorrhages Incidence declines rapidly within 72 hours Gone by 4 weeks post-natal Differential Diagnosis and Common Defenses Accidental falls: 1. Serious or life threatening injuries other than epidural hematomas are extremely uncommon in falls < 4 feet 2. Fatal or serious injuries found much more frequently in uncorroborated falls, when compared with those witnessed by others unrelated to the perpetrator 3. Severe accidental injuries are rarely seen in infants less than 1 year of age 4. Mortality rate for children falling from a 2 nd, 3 rd, or 4 th story window is < 1%, AHT mortality rate is 25-33%

18 Who Does AHT Affect? EVERYONE! Infant victim Whole family including the baby s brothers & sisters Extended family and parent s friends Police and detectives who investigate the case Health care professionals who care for the baby Perpetrator All of us as a society Who Does AHT Affect? Cost to society as a whole includes: Short and long term medical care (approx: $50, initial hosp/ 3-14 million dollars in lifetime) Counseling County agency investigations Foster care Legal fees A lifetime of support services Together We Can Make a Difference... Education... is the key to is the key to prevention

19 How Can We Educate? 1. One-on-one one discussion with the nurse 2. AHT prevention video 3. SBS educational brochure 4. Commitment Statement 5. Posters on the unit How Can We Educate? Talk about taking the baby home from the hospital & the things that all babies do: Eat Soil Diaper Sleep Cry Crying Facts Crying is normal All babies cry, it doesn t mean you are a bad parent Crying never hurt a baby Crying 2-3 months It can be unpredictable Painful facial expressions Long bouts can last minutes Evening crying is common You may not always be able to get your baby to stop crying and that s OK

20 Crying What To Do Feed Change diaper/clothing Swaddle Offer pacifier Rock gently Sing/play music Take baby for walk Check for signs of illness Put the baby in a safe place and WALK AWAY! Calm down, regroup, check on baby in 5 minutes Parents Perception Crying - What Not To Do Do not hold your baby when you are angry. Do not touch any child when you are angry. Never, Ever, Ever, Shake, Throw or Slam a Baby!

21 AHT Prevention Video Portrait of Promise Contains important message & helpful hints for parents despite some portions being dated. New AHT prevention video is currently under production at Penn State Hershey for use in all PA hospitals by November Educational Brochures Commitment Statement 1. Legal Document: part of medical record 2. Triplicate Form 3. Bilingual Format 4. Nursing Documentation Area

22 Pennsylvania Data... SBS Project Year # of Reported Births # of Commitment Statements Returned # of Commitment Statements Signed by Either Mom or Dad % of Commitment Statements Signed by Either Mom or Dad Notes ,251 7,687 7, % Central PA Only ,109 24,777 24, % Central PA Only ,685 45,073 45, % Statewide ,960 99,762 98,664 99% Statewide , , ,304 99% Statewide , , , % Statewide , , , % Statewide , , , % Statewide , , , % Statewide Total 920, , , % Statewide In 2010, 94% of all births had commitment statements returned & 99.5% of the returned statements were signed by one or both parent Does Parent Participation Make a Difference? YES! No Returned CS Returned CS 35.5/100, /100,000 Relative Risk= 2.3 Parents who don t sign the commitment statement are more than twice as likely to abuse their baby! Troubleshooting Potential Questions from Parents 1. Why are you telling me this? 2. Do you think I would do this to my baby? 3. This is disturbing to me.

23 Concerns from Nursing Staff 1. Perception that information is upsetting to parents or inappropriate at time of birth 2. Staff is too busy 3. Dads are unavailable/not involved 4. OB responsibility/nicu issue 5. HIPPA concerns Assistance with Implementation 1. PNA approved in-service presentations 2. Supplies provided FREE of charge 3. Data Tracking/Reports 4. Quarterly Newsletters 5. Documentation guidelines/policy recommendations 6. Resource for questions and ongoing support Success of the Education Depends on the Hospital s 1. empowering the nurses to be effective educators 2. consistent implementation of ALL program components 3. commitment to AHT education & child abuse prevention 4. providing the parents with the skills needed to cope with a crying baby

24 Success of the Education Depends on the Parents 1. understanding the horror of shaken baby syndrome injuries 2. passing this information on to everyone who cares for their children 3. making good choices about who watches their baby 4. remembering to put the baby down when they are angry 5. telling others to call the parent if they are feeling stressed when caring for the baby Something Needs to Be Done... Some babies that are shaken do grow up and need a lifetime of care. Phase II Office-based Booster Education central Pennsylvania counties were randomly selected to provide office education in addition to hospital-based program (~400 offices/~1,000 providers) 15 remaining counties, along with eastern & western PA, provide only the hospital-based program

25 Key Elements of Office Education... Discuss infant crying at the 2, 4 and 6 month well baby checkup Discuss how to cope with crying Provide a Crying Card Request that parents sign a postcard confirming that they received the information at each visit Forward signed postcards to SBS Program Feedback from Parents.... Hospital and 7-Month Surveys Identify parents perceptions of the most effective educational tools Compare parent demographics obtained from survey responders with statewide AHT statistics Determine effects of education on caregiver behavior Plans for the Future.... Assess cost and feasibility of outpatient education Assess effect of education on AHT incidence in PA and how we compare to other states Explore avenues to provide additional education to high risk populations: Hospital and home settings Outpatient family support services

26 AHT Prevention: A Chance to Save a Life REMEMBER: This doesn t have to happen! We can work together to change this tragedy. It only takes a few minutes of time per family. It s simple, it s inexpensive and it s effective. PA SBS Prevention & Awareness Program: Saving Babies Lives One Family at a Time