Saturday, March 21, 2009

To the MySpace "Friends of Kaleb" - Some Thoughts and a Challenge

The unprecedented outpouring of deep-felt concern from MySpace members to Kaleb Schwade, a young infant and victim of Shaken Baby Syndrome, has left me once again with a strange mix of both sadness and excitement.

Sadness because since the late 80s when our child abuse prevention organization, Massachusetts Citizens for Children, first began educating parents and professionals about the problem, too many other SBS victims' names have crossed my desk .... Patrick, 6 months old, Boston; Natalie, 5 months, Brockton; Josh, 3 months, Dracut; Theresa, 2 months, Worcester; Harry, 4 months, Framingham; Jack, 1 month, Holyoke; Adam, 2 months, Leominster; Melissa, 3 months, Lynn; Frank, 6 months, Brighton; Heather, 3 months, Rockport; Michael, 2 months, Holden; Patricia, 1 month, Springfield. . . Behind each name is the story of a child's broken trust and a parent or caregiver's broken promise to care for and protect. Each name tells a story of frustration escalating to anger and then to violence. Each name is a reminder of shattered lives and devastated families that can never be the same again. And these are just a few names .....There are so many more whose names never reach the newspaper or television...or MySpace.


Excitement might seem like an out-of-place emotion in response to Kaleb's tragic situation. Yet, as a child abuse prevention advocate and activist, hopeful excitement is precisely what is stirring in me. I am energized because the plight of Kaleb and his family is touching thousands of hearts and when people are moved by such a senseless tragedy, they can be guided through their emotions of sadness and anger to a place where action and prevention are possible. That place is where I live every day and where I have been living since the mid- 1970s when I first immersed myself in the issue of child abuse as a young professional working in a depressed region outside of New Haven. I learned first hand then that when people are moved by an injustice and are then equipped with facts and promising solutions, they can be mobilized to create real change.


These feelings from learning about Kaleb, his mom's journal, and the response of MySpace members, took me back in time to one early morning in February of 1997 when I was driving to work and heard the first radio reports about 8-month old Matty Eappen who had also been shaken and was struggling for life at Boston Children's Hospital surrounded by his devastated family. I couldn't drive fast enough and when I got to my office immediately contacted various media outlets to tell them we had information about SBS that they must inform the public about. I was excited about the chance to turn a shocking and distressing situation into an opportunity for hope and a second chance at life for other infants like Matty.


Only a few months earlier, we had launched our SBS Prevention Campaign in Massachusetts with radio spots and a new comprehensive brochure that we were eager to share. (Over 1 million have been distributed to date.) We had been disappointed earlier to find so few good materials. Most were focused on SBS and its damage and exhorted the reader simply not to do it. I remember one with the message: "Shake a rug, shake a rattle, but never shake a baby." We wanted to do more. We wanted to tell parent and caregivers what to do instead and so we incorporated information in our materials about infant crying - a key trigger for shaking. We shared specific techniques on how to soothe crying and fussy babies, what do to if attempts at calming didn't work, and how to get support for themselves to cope with the stresses of caring for a young baby.


And so we provided information to the media, wrote op ed pieces for the newspaper, went on radio talk shows, and even appeared on the Geraldo Show. We knew from a previous study that half of those surveyed said they did not know that shaking a baby could be dangerous. We hoped that the international attention generated by Matty's story and the subsequent trial of nanny Louise Woodward would certainly educate millions about the dangers of shaking. People did became more aware of SBS but beyond knowing now that they should never do it, these media opportunities did little to educate people about the real facts of infant crying, effective ways to soothe fussy babies, and what they should do to take care of themselves when the stresses of caring for an infant became too stressful.


After the Matty Eappen story faded from the headlines, our organization went on to spearhead an In-Hospital SBS Prevention Program for parents of newborns in Central Massachusetts. Using the approach of Dr. Mark Dias, a pediatric neurologist in Western New York State who had instituted a program to alert parents of newborns about the dangers of SBS, we and our colleagues in Worcester County worked to improve the training for nurses and the information parents would receive. The good work of this dedicated group was recognized by other state leaders and we succeeded in passing the most far-reaching legislation in the county on SBS prevention, one that requires hospitals to educate all parents of newborns about SBS and its prevention.

If Kaleb could convey a message to each one of us, he would ask us to honor him by first educating ourselves about why these terrible tragedies happen and then by spreading information about prevention to parents and caregivers everywhere. Many of those praying for Kaleb are familiar with the Prayer of St. Francis - "Lord, make me an instrument ....." I'd like to propose that after we have shed tears of compassion for Kaleb or expressed our anger about the person responsible, each of us commits to being an instrument of Shaken Baby Prevention. If each of Kaleb's many thousands of MySpace friends do this, we can prevent other infants from dying or surviving with life-long, permanent disabilities. Together, we can become an effective voice for our littlest children who have none.

Kaleb After a Nap


There is much to learn about SBS - why it's under-reported, under-detected and too often misdiagnosed; why infants are so vulnerable to shaking; signs to look for in infants who might have been shaken; factors that cause some adults to resort to shaking; who are most often involved in shaking incidents; and most importantly, how we can prevent SBS. I will be posting information about this and other children's issues in this blog in the months ahead. But to get started, I thought that each of you might want to access our newest brochure on SBS which you can find a link to on this website.

sbs brochure cover

Thanks to each one of you for expressing your concern for Kaleb and for all your future efforts to save other babies from this devastating yet preventable form of child abuse. Jetta

Download Brochure PDF


Jetta Bernier is the Executive Director of Massachusetts Citizens for Children (MCC), the nation's oldest, statewide child advocacy organization. She directs MCC's Shaken Baby Syndrome Prevention Center and has been a child abuse prevention advocate for over 30 years.

sbs prevention center logo

Shaken Baby Syndrome
Shaken Baby Syndrome (SBS) is a form of physical abuse and a leading cause of death and disability in infants. It is caused when someone taking care of a child loses control of his or her anger and shakes the baby. Most cases occur when a caretaker, frustrated by a child's persistent crying, shakes her to make the crying stop--not realizing what the shaking could do.

Tragedy

On May 9th, 2007 Kaleb was picked up by his Grandmother and Aunt. He was lethargic and experiencing obvious breathing abnormalities. Kaleb was at the doctors the day before and was given a "clean bill of health". When Kristy arrived at her mother's home to pick Kaleb up, she described him as "having no life in his body". She tried repeatedly to wake him, but with no avail. While in the vehicle, Kristy lifted Kaleb's little eyelids. She noticed that his pupils were different sizes. She knew immediately that this was the sign of a head injury- Kaleb needed IMMEDIATE care. They stopped at the nearest firestation. The ambulance took him to the nearest hospital. He was then life-flighted, and was admitted to the PICU. He was diagnosed with Shaken Baby Syndrome. They also discovered that he had been SMOTHERED...

The outpouring of emotion and feeling for baby Kaleb is phenomenal. It is goes to the core of our humanity, the protection and preservation of those/that which is most vulnerable, our BABIES.