Raising Awareness for Child Abuse

By Rachel Berger, MD, MPH, chief, Child Advocacy Center

Berger_RachelP_MD_9246webApril is National Child Abuse Prevention Month. I look forward to this month each year, both because it means that spring is finally here, and because I am often provided with opportunities to raise awareness about child abuse.

The past year has been an important one for vulnerable children in our community. On January 1, 2015, major changes to the child abuse laws in Pennsylvania went into effect. These laws were a direct result of the recommendations made by the Pennsylvania Task Force on Child Protection, a task force which was established, in large part, due to the Jerry Sandusky case and the inadequacies in the child protection system that this case brought to light. The new legislation has resulted in a wide range of changes to the Pennsylvania child abuse laws, including:

  • Updates to the definition of physical abuse
  • Expansion of the groups of adults who are considered mandated reporters
  • Establishment of a statewide database/central register of reports of abuse and neglect

A summary of these new laws can be found at http://keepkidssafe.pa.gov/index.htm.

While these new laws will take some time to adjust and to incorporate into daily practices for Child Protective Services, mandated reporters, and others, they are a significant step forward in our goal of protecting Pennsylvania’s children from child abuse and neglect.

There has also been progress nationally. Last year, at this time, the Commission to Eliminate Child Abuse and Neglect Fatalities had met for the first time. According to a report from the United States Government Accountability Office, at least 1,500 children and perhaps as many as 3,000 children, die every year as a result of abuse or neglect. By comparison, the American Cancer Society reports that about 1,250 children younger than 15 years old are expected to die from cancer in 2015. Unlike treatment for cancer, which has greatly improved childhood survival over the past 20 years, there has been little, if any decrease over the 20 years, in the number of children dying from child abuse and neglect. In the past year, the Commission has met in Texas, Florida, Michigan, Colorado, Vermont, Pennsylvania, Arizona, and Oregon and has heard testimony from physicians, lawyers, child protective services workers, parents, and others. The ultimate goal of the Commission will be to develop policy recommendations for 2016.

Locally, the physicians, social workers, and nurses at the Child Advocacy Center at Children’s Hospital of Pittsburgh of UPMC have, unfortunately, had a busy year.

  • Our team of forensic specialists interviewed over 600 children who may be victims of sexual or physical abuse.
  • Our Child Protection team evaluated just under 500 children who were admitted to Children’s with concerns for abuse or neglect, including broken bones, brain injuries, toxic ingestions, and abdominal injuries.
  • Our physicians, nurse practitioners, and nurses evaluated close to 1,500 children in the ARCH (Advocacy Resources for Children) outpatient clinic, which is focused on providing primary care to children in foster care in the community, providing follow-up for children who have recently been admitted to the hospital for child abuse or neglect, and performing physical exams on children in the county who are entering or leaving foster care or moving between foster homes.

In addition, we have been preparing for the end of the month, when we will host the 10th annual Pittsburgh Conference on Child Maltreatment. More than 15 counties in Pennsylvania participate in this conference with participants including lawyers, child welfare workers, medical professionals, therapists, and those involved in the provision of services to children in the child welfare system. This year, we have received funding from the Pennsylvania Commission on Crime and Delinquency to provide scholarships to cover the registration costs for several members of our multidisciplinary team. This funding has also allowed us to improve our peer review process, purchase digital cameras to improve our photo documentation of injuries, and provide interpretation services and transportation for the families we serve.

When I talk with friends, family, and neighbors about what I do, they often ask how they can help support children in our community who are at the highest risk of abuse and neglect or who are already victims. There are many ways you can make a difference in the lives of children in our community, such as:

  • Volunteer at one of the many nonprofits in our county that serve these children and their families.
  • Encourage your state legislators to ensure that the Commonwealth provides sufficient funding to organizations that serve children who are victims of abuse or neglect.
  • Donate to one of the many organizations that provide services for at-risk children and families.

Perhaps most important are the things you can do every day in your community:

  • Volunteer to help a neighbor who is overwhelmed by the stresses of parenting.
  • Be available when a friend or colleague needs someone to listen and you can provide a few words of encouragement.
  • Give support to a stranger in the grocery store who seems to be having a difficult parenting day.

A colleague once told me that the best piece of parenting advice she ever got was to take a photo of her child whenever she found herself reaching the end of her patience. The time it takes to stop and take a photo is enough time to bring an adult’s stress level down. And from looking at a photo of a screaming, out of control toddler, is enough to make any adult smile. I have followed this advice a few times myself and I can tell you that it works. And perhaps, it makes it less likely that the parent on that day will lose his or her patience with a young child. This is how we can all help support children in our community every day.

Earlier this month, Pittsburgh City Councilwomen, Theresa Kail-Smith and DarleneIMG_0505 Harris, presented a proclamation commending the Child Advocacy Center. In addition to recognizing the tremendous work the center does, the proclamation recognized the staff for their dedication serving children and families in our communities. It also declared April 2015 to be Child Abuse Prevention Month in the City of Pittsburgh.

To learn more about the Child Advocacy Center at Children’s Hospital of Pittsburgh of UPMC, please visit www.chp.edu/cac and consider attending the 10th Annual Child Maltreatment Conference, which will be held April 23-24, 2015.

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Our Journey with Biliary Atresia

By Amber Fosler, mother to Elias Fosler

Discharge day 2 weeks post txWhen my husband and I welcomed our first child, Elias, 5 weeks early, we were terrified. He was a strong 6 pounds and despite developing jaundice, he was healthy. We took him home a few days later and tried to navigate being first time parents. We went every couple days to have his lab work monitored in our hometown of Columbus, Ohio. As he approached a month old though, the jaundice was getting worse, not better. When he was 5 weeks old, he was diagnosed with the rare liver disease, biliary atresia. When Elias was 7.5 weeks old, he underwent surgery to have a procedure done called a Kasai to create a passageway for the bile. The surgery went well and we tried to settle into life with a newborn. We knew the statistics were against us, with a very high percentage of biliary atresia patients needing liver transplants before they reach kindergarten. We tried to stay focused on living each day at a time.

On December 31, 2013, Elias came down with a fever. That one fever kicked off a scary, traumatizing three months. We spent more days in the hospital than at home. We knew we needed the best. At the end of January, Elias was flown from Columbus to Pittsburgh. He was evaluated by doctors at Children’s Hospital of Pittsburgh of UPMC and was added to the national liver transplant list. That began the longest wait of our lives. Elias was stable enough to return home to Columbus after his evaluation, but we still were in and out of the hospital.

By mid-February, Elias was in acute liver failure which was causing other life threatening complications.  He was a sickly shade of yellow. His skin sagged over his bones as he lost more and more weight yet his abdomen grew more and more distended. We were running out of time. His priority on the transplant list was elevated, but due to his small size, just 12 pounds at the time and rare blood type, we continued to wait while his health deteriorated. There simply were not enough registered donors that matched his needs.

Quietly in the background though, a gift was in the works. My husband’s cousin droveFirst heli ride to CHP for eval from Ft. Wayne, Indiana to Pittsburgh to be evaluated to be a living donor. He was a match! Surgery was scheduled for a few days later. We planned to drive to Pittsburgh, but Elias has never been one to follow a plan. We ended up back at the hospital in Columbus in the intensive care unit. They worked quickly to get the helicopter ready so we could take yet another trip to Pittsburgh. A few days later, on February 26, 2014, when Elias was 7 months old, our hero, Zac, donated a portion of his liver to our sweet Elias. The lead transplant surgeon was Kyle Soltys, M.D., with help from the transplant team of George Mazariegos, M.D., Rakesh Sindhi, M.D., and Geoffrey Bond, M.D., all within the Hillman Center for Pediatric Transplantation at Children’s.

Within 24 hours, Elias’s skin was pink and pale, as it should be! The whites of his eyes were actually white, a shade we had never seen on him before. Zac gave our son the gift of life and gave our family hope. None of that would have been possible without the skilled surgeons, doctors, nurses and everyone else at Children’s Hospital of Pittsburgh of UPMC that made this transplant a reality.

We spent two weeks in the hospital after the transplant and were then discharged to stay at the Ronald McDonald House until his transplant team felt he was stable enough to return to Columbus. We spent a total of 47 days in Pittsburgh for transplant and recovery. During that time, the staff at Children’s Hospital didn’t just take amazing care of Elias, they took care of our entire family.

Enjoying the sunroom on 7B post transplantIn the hours after the transplant, Elias was trying to fight through all the sedation. He was trying to roll over and pull out his breathing tube and drains. It was gut-wrenching to watch. But one very kind nurse in the Pediatric Intensive Care Unit sat down with me and my husband and carefully explained everything that was happening and reassured us that Elias was ok. I will never forget how kind he was.  And we want to give thanks to all of the nurses on the transplant unit. It was so comforting to know that the team of nurses understood liver disease and transplants. They are so skilled and experienced, yet incredibly compassionate. They treated Elias like he was their own. They celebrated the smallest of milestones, the first post-surgery bowel movement, to the biggest, which was normal liver function!

The Child Life Department was also a huge help during our time at Children’s. The team on the transplant unit was amazing. They understood our son’s age and limitations and brought him toys and bubbles that engaged and distracted him. They brought him mobiles for his crib, toys to play with, even a walker so he could sit up and check out the happenings at the nurses’ station and the sun room.

By far the most wonderful thing they did for Elias was enroll him in the Beads of Courage® program. Elias won’t remember the trauma of the first year and a half of his life, but through his beads, we will be able to share his story with him. But the beads aren’t just for him. They are for me and my husband and our families. All of us earned those beads too. We were with Elias for all of it. Child Life made it possible to turn a scary and terrible time in our lives into something beautiful! We have nearly 6 full necklaces of beads that are beautiful and empowering. We made it through all of that and will make it through whatever life has for us.

We returned to Children’s in October of last year for Elias’s abdominal wall closure surgery. It was a painful recovery for him and we had a new set of challenges caring for a toddler in the hospital instead of an infant, but once again, the hospital staff was amazing at helping us navigate those challenges. I think they were also happy to see Elias and how well he was doing post-transplant. They have been on this journey with us.

We spent around 30 days at Children’s last year and while I would love if Elias didn’t haveelias post to go through what he did, I am thankful we had the support of Children’s to make it a little easier. Elias is now a wild, happy, active 20 month old. You would never know that we came within days of losing him. The beautifully heartbreaking thing about it all is that he has no idea what he’s been through. He’s a fighter, yet he doesn’t know any different. And for that, I am thankful as we navigate a post-transplant, immunosuppressed world.

We are so thankful for Children’s Hospital of Pittsburgh of UPMC and the amazing people who have been a part of our journey. Thank you!  Without you, we wouldn’t have a sweet, thriving toddler to chase after!

Patient outcomes and experiences shared in this blog by families are not intended as typical or representative cases. Every family’s story is unique.

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Random Acts of Kindness – Down Syndrome Awareness

IMG_4306Emily Pratt, a patient at Children’s Hospital of Pittsburgh of UPMC, was required to do a senior project for her high school graduation and wanted to support Down Syndrome Awareness, so she decided to create handmade bracelets and sell them to family and friends.

The proceeds, which totaled around $1,200, were used to purchase 120 children’s books on topics such as colors, numbers, and the alphabet. These particular books each featured children with Down syndrome on every page.

Emily and her family came to Children’s Hospital  last week to present the books toIMG_4303 Kishore Vellody, MD, medical director of the Down Syndrome Center of Western Pennsylvania. With World Down Syndrome Day celebrated on March 21, it was a great tie in! The theme for World Down Syndrome Day was “random acts of kindness”, and Emily’s support definitely exemplified that.

Emily’s project will surely help families who visit here who have a baby with Down syndrome enjoy reading to their child. Each new parent packet at the Down Syndrome Center at Children’s will have a book, donated by Emily Pratt.

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Broken Crayons Still Color

By Katie O’Connor, MA, CCLS, Art Therapist, Children’s Hospital of Pittsburgh of UPMC

FullSizeRender1Some people are so badly broken that you cannot ever fix them. A professor announced this very pragmatically during my first counseling class of graduate school. I left feeling challenged, somewhat discouraged, and perplexed. Over the years, I developed a deeper understanding of that statement and now have the perfect response: “Broken crayons still color.”

Allowing children to safely explore and express their hospitalization through creative experiences are some of the moments I love most. Things like watching an anxious child tear paper into tiny shreds or smash Play-Doh® into the floor; seeing a smile spread across a child’s face as he creates purple by mixing red and blue for the first time; or hearing another giggle as mom squeals, “Eww, that’s so messy.”  These moments are indescribable.

Almost three years ago, as an art therapy extern here at Children’s Hospital of Pittsburghphoto3 of UPMC, I dreamt of starting an art therapy program for our patients and families. I feel incredibly grateful and privileged to be part of such an amazing team and for the opportunity to grow our art therapy program.

After starting as the first art therapist in November 2014, I have consulted with over 90 families.  Art therapy sessions are offered to our patients and families in the form of individual, sibling, family, and group sessions. Open studio art sessions are also scheduled in the Eat’n Park Atrium and are open for all patients and families to attend.

I’m looking forward to assisting patients to process their artwork and support them while working toward a healthier self.

For more information, please contact the Child Life Department at 412-692-5022.

 

 

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The Sensory Room Offers Kids Therapeutic Fun

The Child Life Department at Children’s Hospital of Pittsburgh of UPMC has developed a room that incorporates many interactive elements that give kids the chance to use all of their senses in a room that is both fun and therapeutic.

Child_Life_Month_3The Sensory Room at Children’s Hospital is a therapeutic space designed to help control pain without the use of medication, and to relax or stimulate appropriate inpatients.

“The space is designed to promote sensory relaxation and stimulation, as well as offering opportunities for self-discovery and meaningful therapeutic opportunities,” said Ashley Barrasso, child life specialist.

Located on the 6th floor of the hospital, across from Austin’s Playroom, the room includes items such as:

  • Lighted bubble column
  • Fiberoptic cables bundles together that change colors
  • Touch wall panels with heat sensitive technology
  • A bubble mirror that magnifies images
  • A lighted marble panel
  • Lumiglow panel that allows kids to draw or write with a light pen
  • A tunnel with fiberoptics
  • Different tactile activity pads
  • Disco ball and music system

Child life specialist Colleen O’Connor enjoys bringing patients into the sensory room.Child_Life_Month_1
“Kyra and I enjoy coming by during the week and interacting with all of the different areas of the room,” said Colleen O’Connor, child life specialist. “Watching her eyes light up when experiencing the sensory items is a great feeling. It allows her to relax and use her each of her senses in an exciting way.”

Also, a big thanks to the Sprout Fund for their generous support of the room!

To learn more about the sensory room, contact Child Life at 412-692-5022 or visit www.chp.edu/childlife.

 

 

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Supporting Families in the Emergency Department – Child Life

By Alanna Kanawalsky and Stephanie Colaberardino, Certified Child Life Specialists, Emergency Department, Children’s Hospital of Pittsburgh of UPMC

ambThe Emergency Department (ED) at Children’s Hospital of Pittsburgh of UPMC has child life coverage seven days a week split between two certified child life specialists (CCLS). They are professionally trained individuals in the field of child development, psychology, and family systems. They are both have master’s degrees and have completed an extensive internship and certification process. Child life specialists promote coping through play and developmentally appropriate education and preparation for the health care experience.

As a child life specialist in the ED, the day starts at noon and finishes at midnight for Stephanie Colaberardino and Alanna Kanawalsky. Being a child life specialist in the ED is challenging, and they often wear many hats. The busy and ever-changing day may consist of providing play opportunities, to supporting a patient through a difficult procedure. They can be seen playing with medical equipment and dolls to help a child understand their care or assessing a child’s ability to cope. They may be found supporting a family in distress after a trauma or helping a new mother find comfort while taking care of her infant in the hospital. While Stephanie and Alanna share the same responsibilities and duties, their stories and experiences in their role are unique. Together, they are proud to be a part of the ED team at Children’s Hospital.

Meet Stephanie

IMG_6381Stephanie has been a CCLS for 13 years, spending most of these years in the ED. She enjoys setting a positive tone for patients and families as they begin their hospital journey. The ED is often a child’s first real hospital experience. They do not speak the medical language and everything about it is new and potentially scary. Stephanie uses developmentally appropriate language to help ease these fears and anxieties and identifies ways for even the youngest of patients to be involved with their health care experience. To further enhance trust, Stephanie utilizes play as a primary tool for normalization.  When a child is more comfortable in their environment and has an appropriate understanding of what is happening, he or she is more likely to develop trust in the health care team and may be more compliant with tests and procedures.

As a child life specialist, Stephanie understands the importance of helping a child develop coping skills in this new environment. The hospital can provoke stress in a child and they may not have developed the coping skills to “relax” on command. Stephanie works to meet the individual needs of the child by exploring coping skills that aid in the cooperation for tests and procedures. For example, instead of asking a young child to take deep breaths for an IV placement, Stephanie may offer bubbles for the child to blow.

Children’s Hospital treats adolescents and young adults in addition to small children. It is important to remember that adolescents may also have fears, anxieties, and misconceptions related to the hospital. Stephanie understands that adolescents, though physically more developed, are still growing cognitively and emotionally. Adolescents tend to do best in this environment when their questions are answered, their feelings are validated, and they feel involved in their care.

While patients are generally Stephanie’s primary focus, it is important to consider the entire family unit present in the room. Child life specialists in the ED value Children’s patient-and family-centered care philosophy by understanding that this can be a stressful place the whole family. Stephanie identifies the immediate and basic needs that she can quickly meet and serves as a support and liaison between the family and medical team. Stephanie truly loves her job as a child life specialist. Though a patient’s visit may be short, Stephanie hopes that child life services can set a long-lasting positive impression that carries on through into adulthood.

Meet Alanna

Alanna has been a child life specialist for six years. She has provided child life services in other areas of the hospital as well, but has settled into her new home in the ED recently. She understands the importance of developing a quick rapport with patients and families to provide support during a stressful time.

Alanna received a consult to support a young trauma patient who presented to the ED after a dog bite to the face. She was asked to provide distraction and support during laceration repair.

Alanna entered the trauma bay and found the patient along with the mother and father atIMG_6379 bedside. The patient had several lacerations to the face with the most severe being under her left eye and chin. Alanna got down at her eye level and easily engaged the patient in conversation. Without prompting, the child recanted the experience that brought her to the ED. Children process and cope with a trauma by retelling their story. Alanna was able to validate the patient’s fears and provide support. She commented on the patient’s bravery and ability to defend herself against the dog. She also provided her with a blanket and stuffed animal for comfort after such a traumatic event. Alanna prepared the child for laceration repair using developmentally appropriate language, describing the sequence of events and allowing her to manipulate real medical items to become more familiar with what to expect. Patients are often more compliant with procedures if they are prepared because it can take away the fear of the unknown. During a preparation session, a coping plan is often established. The child is presented with choices to create a plan that can provide them with a sense of some control in a situation where they have very little.

In this particular situation, Alanna was going to use her iPad to distract the patient during suture placement. The iPad is one of many tools Stephanie and Alanna use in the ED to distract and support patients during procedures. The patient was easily distracted by the iPad as well as encouraging words from Alanna.

Both Stephanie and Alanna often hear from parents “I wish I knew about your job when I was younger, it seems like so much fun.” They simply smile and agree. Alanna says she loves what she does and not many people can say the same. Both agree they love that they can make a difference in the lives of children and families during some of their most challenging times.

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Injury is not an Accident

By Chris Vitale, Injury Prevention Manager, Children’s Hospital of Pittsburgh of UPMC

VITALE_C_RN_CAMEO_CHP_20100803The Injury Free Coalition for Kids team at Children’s Hospital of Pittsburgh of UPMC commends and stands with Nationwide Insurance Company and its commercial during the Super Bowl to raise awareness and start a conversation about the number one cause of death and disability to our nation’s children: injury.

We respect their choice to put this message out in the largest venue possible because it is that important. The facts are clear:

  • Injuries kill more children in the U.S. every year than all other causes combined.
  • Injuries are not accidents.
  • Injury is a disease that is curable with prevention: We know it works, we’ve seen it happen by making play spaces safer, by changing the environment, and by adding protection, etc.
  • Kids should be able to explore, play, and take risks as they grow without the threat of trauma.

As more people become aware of the severity of this issue, together we will decrease the numbers of children killed or hurt. Share the message, ask questions, and get help. It’s hard to listen to a commercial message about a child dying, but it’s much harder to hear it in reality. We can all make a difference.

The Injury Free Coalition for Kids is among the country’s most effective injury prevention programs. Injury Free is comprised of hospital-based, community-oriented injury prevention sites whose efforts are anchored in research, education, and advocacy. Each site is housed in the trauma center of its participating institution. They are all independent, physician-led programs driven by the Coalition’s mission: preventing injury to children. While research determines where the injuries take place and which ones most prevalent and severe, most of the injuries addressed occur in urban environments, and Coalition members work to empower the diverse populations who live there.

For more information on Injury Prevention, please visit www.chp.edu/CHP/besafe.

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