2014 International Walk to School Day

IMG_3942 - CopySafe Kids Allegheny County, of which Children’s Hospital of Pittsburgh of UPMC is the lead agency, joined local school children, and FedEx volunteers on Oct. 8  to raise awareness about child pedestrian safety on International Walk to School Day.

Kids from Avalon Elementary School and Bellevue Elementary School in the Pittsburgh area participated in this year’s activities as part of the Safe Kids Walk This Way program. This is the 15th year of the program and the partnership with FedEx. The kids began at North Boroughs YMCA before the walk to school. Volunteers taught the kids how to be safe pedestrians as they walked to and from school.

Volunteers walked to school with students to identify unsafe intersections, streets needing sidewalks, and dangerous areas where pedestrians have either been hit or nearly injured by a motor vehicle.

After the walk, a community meeting was provided for the parents/caregivers at each school. Law enforcement and safety professions spoke on pedestrian safety. A discussion followed where safety concerns were addressed and an action plan was suggested to make walking to school safe for children and the community.

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Safe Kids Allegheny County works to prevent unintentional childhood injury, the leading cause of death and disability to children ages 1 to 14. Safe Kids Allegheny County is a member of Safe Kids Worldwide, a global network of organizations dedicated to preventing unintentional injury. Safe Kids Allegheny County was founded in 2005 and is lead by Jordan Hinds, Community Program Specialist at Children’s Hospital.

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October is National Down Syndrome Awareness Month

By Kishore Vellody, Medical Director, Down Syndrome Center of Western Pennsylvania, Children’s Hospital of Pittsburgh of UPMC

Vellody_Kishore_MD_Diagnostic_RIn 1984, President Ronald Reagan signed a resolution declaring October as National Down Syndrome Awareness month.  Thirty years later, we continue to celebrate the lives of people with Down syndrome every October and bring awareness to what people with Down syndrome can do when given the right support and resources.   We also remember and bring awareness to the tremendous impact that people with Down syndrome have on their families and friends.

There are an estimated 350,000 people with Down syndrome living in the United States today.  However, most people are not aware of some very interesting facts about Down syndrome.  Most medical textbooks and websites tend to focus on the potential medical complications that people with Down syndrome may face.  However, I think a blog on Down Syndrome Awareness month is a great place to talk about a few of the many positive aspects of Down syndrome that are not frequently discussed.  Let me share some examples of what I mean:

  • We have found that people with Down syndrome do not seem to get solid organ tumors. We just don’t seem to see people with Down syndrome get diagnosed with lung or colon cancer, for example, yet these are among the most common cancers in the general population.
  • People with Down syndrome don’t seem to get atherosclerotic disease in their hearts. These are the cholesterol related plaques that build up in so many other people’s hearts and cause heart attacks.
  • There is a very low incidence of high blood pressure (or hypertension) in people with Down syndrome.
  • The response to the treatment of certain conditions, including certain types of leukemia, are actually better in children with Down syndrome than in the general population.
  • Children with Down syndrome recover from certain types of pediatric heart surgeries better than other children.

These are only just a few of the medical benefits that occur in Down syndrome.   There are many more.  As people with Down syndrome are now living longer and healthier lives than ever before, I’m sure there will be even more things that will be discovered.  Since it is known that people with Down syndrome differ from us by only one extra 21st chromosome, scientists are eagerly investigating where these health benefits lie on that chromosome so that we could potentially improve the health of so many other people.

While the medical advantages of Down syndrome are interesting, anybody who has ever11 interacted with someone with Down syndrome knows that there is so much more to be learned from them!  After spending time with someone with Down syndrome, you rarely walk away the same person!  Many people with Down syndrome just seem to have a way of making others feel special and important.  My brother, Das, has Down syndrome, and we have always been as close as two brothers can be.  No matter how I’m feeling, a quick call or visit with him will turn around even my hardest days.  He can effortlessly cheer up other people and help them to look at the bright side of things.

With each passing Down Syndrome Awareness month, I find myself becoming much more aware of the impact that my brother has had on my life.  He was born in 1975 at a time where people with Down syndrome were not given much of a chance.   There was no month to celebrate Down syndrome awareness.  There were minimal educational or employment opportunities for people with Down syndrome.  Medical healthcare guidelines didn’t even exist yet for Down syndrome.

However, my parents were determined to raise my brother in a loving home, and their decision changed my life forever.  Das is the most loving, forgiving, and compassionate person I have ever known.  I owe him so much more than he could ever comprehend.  My career choice as a physician stems from every time I saw him selflessly help others while we grew up.  My decision to become a pediatrician and, eventually, to direct the Down Syndrome Center of Western Pennsylvania, comes from a desire to give back indirectly to my brother who has given me so much.  So, Das, this October, I’m going to remember each day how much you mean to me.  I love you, bro!

For more information about the Down Syndrome Center of Western Pennsylvania, please visit http://www.chp.edu/CHP/downsyndrome. You can also download our audio podcasts on iTunes. Visit http://www.chp.edu/CHP/down+syndrome+podcasts to learn more.

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Talking to your Teen about Intimate Partner Violence

By Elizabeth Miller, MD, PhD, Chief, Adolescent and Young Adult Medicine, Children’s Hospital of Pittsburgh of UPMC and Associate Professor in Pediatrics, University of Pittsburgh School of Medicine

MILLER_ELIZABETHAs video footage and news reports of football players assaulting their female partners and children has prompted a national conversation about intimate partner violence (IPV), the role of sports, and what we can do turn the tide on violence against women. Broad community-level responses are needed that engage youth, parents, schools, faith-based organizations, and youth-serving agencies to shift social norms that regard violence against women and girls as acceptable and expected, to recognize what constitutes abusive behavior, and to raise up healthy and positive examples of intimate relationships. Parents are in an ideal position to help prevent such violence by talking to their children about respect and healthy relationships.

First, let’s talk to our sons about their role in stopping violence against women. For far too long, IPV has been regarded as a women’s issue. Violence prevention research is increasingly showing that attitudes that condone violence against women contribute to sexual and domestic violence.  Efforts to change those attitudes are underway.

On Sept. 11, over 200 men gathered in Pittsburgh to discuss how men can be involved in stopping violence against women. Led by violence prevention advocate Tony Porter, the presentations focused on rethinking masculinity, changing norms that condone violence against women, and ensuring that men are actively speaking out against such violence.  Many of our area schools and community agencies are now engaged in “Coaching Boys into Men (CBIM),” a program developed by Futures Without Violence, available at www.coachescorner.org, that guides coaches to talk to their male adolescent athletes about stopping violence against women and girls.

The program has weekly scripts and discussion points for coaches to share with their athletes about expectations for respectful behaviors toward women and girls. My research team led a study funded by the Centers for Disease Control and Prevention (CDC), which found that the program increases high school male athletes’ likelihood of intervening when they witness disrespectful and harmful behaviors among their peers. One year later, athletes who took part in the program reported lower rates of abuse perpetration than the athletes who did not. In feedback from high school coaches and athletes, most recommended starting this program in the middle school years, when socialization around interactions with girls is just beginning. The CDC recently funded us to conduct a study of CBIM with 6th- to 8th-grade male athletes with the goal of reducing sexual harassment, bullying, and dating abuse.

Second, we need to talk to our children about respectful behaviors and what to expect from their peers. One of the most important strategies to reduce bullying and sexual violence is to increase the likelihood that individuals speak up and stand up against disrespectful and harmful behaviors they see among their peers. Yet as we know from tragic events such as unfolded in Steubenville, Ohio, where youth stood by and watched as an adolescent girl was being assaulted sexually, we need to focus on increasing youth skills in interrupting and stopping harmful behaviors.  The more youth who speak up, the easier it becomes for youth to stand up together to create healthier and safer environments for themselves. We also need to speak with our adolescent children about what they deserve in relationships and that affirmative consent is crucial for any intimate relationship. Simply put, not only “No Means No,” but also that not saying no does not imply consent. This is the approach that we are taking on college campuses across the nation to reduce the risk for sexual assault on campus as well.

In summary, parents are critical support for their children as they transition to adulthood and the complexities of interpersonal relationships. The more we talk to them about respect, consent, and their responsibility in helping to keep their peers safe, the more we empower them to envision a world in which video footage of brutal violence against women and children is a thing of the past.

Please check out www.startstrong.futureswithoutviolence.org for some tips on talking to your children about healthy and respectful relationships. For teens, a great resource, with a 24/7 chat feature, is www.loveisrespect.org.

For more information and to make an appointment at one of the adolescent medicine locations, please visit www.chp.edu/adolescent.

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Banner Care For Our Bonus Baby

By Dawn Campbell, mother of Qavah

IMG_7413Our third child was about to graduate from college and we were talking about retirement, travel, and our empty nest, when we found out that God had other plans for us. We were given a bonus baby. That’s the baby that comes along in life long after mom and dad think the family is complete. We traded our dreams of ease for a different kind of life. In what we consider to be a miracle, we heard about a little girl with a rare blood disease who needed a family and a permanent home. She had been living in the United States foster care system in a rural area of the country. Born with bone marrow failure, she was dependent on monthly blood transfusions to keep her alive. A social worker on her case explained to us that her healthcare was a full time job and the prognosis was grim. In short, we met our little girl, Qavah, just after her fourth birthday, added her to our family, and fell head over heels in love with her. We rolled up our sleeves and went to work exploring options for our new daughter. We literally searched the internet day and night looking for medical intervention and treatment for our girl.

We began by taking Qavah to the National Institutes of Health (NIH) and, after extensive testing, including genetic testing, we recognized that we were dealing with a rare disease, bone marrow failure, an inadequate immune system, irritable bowel syndrome, and several other issues. The diagnosis we received at the NIH and the advice they gave us, led us to consider the option of a bone marrow transplant. At that same time, we were also told that given Qavah’s heritage, (Jamaican and Creole), finding a donor match would be like “finding a needle in a haystack.” Undaunted by that news, we continued to follow every lead by researching medical centers in the hopes that we would find a medical team to address the problems our daughter struggled with daily.

Our normal life melted away and was replaced by endless diarrhea, skin boils, blood transfusions, and multiple hospital stays. After four years of intense care, one night we sat down in front of our computer, desperate for help. Qavah was growing weaker and her system was overloaded with iron from years of red cell transfusions. We typed into Google, “BMT for immune diseases and bone marrow failure”. On that night, a name popped up – Dr. Paul Szabolcs. As we read his biography, we felt an immediate connection, and we decided to call his office the following day. His practice at the time was at Duke University, just three hours from our home. Our first conversation was encouraging, but it ended with Dr. Szabolcs stating that he was leaving Duke to take a position at Children’s Hospital of Pittsburgh of UPMC. He encouraged us to watch an online promotional video about the new hospital, and encouraged us to meet him there. We watched the video and we were impressed by the facility, the staff, and the nearby Ronald McDonald House. Within a month, we made our decision to visit Pittsburgh.

On our first visit, we discovered that there was groundbreaking BMT research happeningIMG_7338
right in the heart of Pittsburgh. It was explained to us that with a mixture of different chemotherapy drugs to wipe out a faulty immune system (thereby lowering the risk of rejection), the doctors would be able to use a bone marrow donor that was not a perfect match but a near match. In the end, it wasn’t necessary to find that “needle in the haystack”, which was a good thing, because every donor base was checked and there were no perfect matches available.

We also discovered that bone marrow transplants are not only for those suffering with blood cancers, but they also offer hope to those with rare diseases like Diamond-Blackfan Anemia (our daughter’s diagnosis). Rare diseases can be debilitating and, in our daughter’s case, bone marrow failure and chronic anemia kept her from growing and keeping up with other children.

Qavah was admitted to the BMT unit on Mother’s Day of 2012. Her transplant took place in June of 2012. Her donor cells came from cord blood and was the lifesaving ticket to freedom that we had hoped and prayed for. We remained in Pittsburgh for several months, working through the complications of transplantation one at a time. Nine months later, we took home a brand new baby! Although our “new baby” was nine years old by then, she was experiencing a normal life for the first time. No longer plagued by fatiguing anemia, and the need for transfusions, Qavah has grown strong; she has learned to swim, dive, ride a bike, and live like a normal kid.

IMG_7332During our forty years of married life, we have renovated a few homes and built businesses to use the skills and talents God gave us.  Although we’ve enjoyed many successes in life, we would say that being given a “bonus baby,” and watching miracles unfold, has been one of the most rewarding experiences we have known in this life thus far. It wasn’t easy to give up the comforts of our home in Virginia, nor was it easy living apart from the rest of our family. However, we found that Children’s Hospital of Pittsburgh was just right for our family. With the Ronald McDonald House keeping us warm and fed, and by forming friendships with the other families on 9B, the BMT team, nurses, and Child Life specialists, our “family” has dramatically increased in number.  Our time in Pittsburgh and the memories are near and dear to our hearts as we watch our daughter thrive and grow before our very eyes. Qavah did not become healthy on her own. She had a strong medical team behind her, cheering her on, and there were many answered prayers.

Now, post-transplant, we only visit Children’s Hospital of Pittsburgh once a year for follow up appointments. On those check-up days, there is a sense of joy in the atmosphere as we greet those who worked so hard to bring Qavah through a very difficult time. You might say it is like a family reunion. We’re thankful beyond words for the life affirming values we observed at Children’s. Life is precious, and we gratefully acknowledge that our bonus baby was the recipient of excellent care.

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What a Difference 24 Months Can Make

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By Micah Walton, father of Hannah Walton About two years ago, all seemed well as we were registering our 18-year-old daughter, Hannah, for college in Ohio where we live. She had not been feeling well, but we didn’t think it … Continue reading

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Pertussis Vaccines for Expecting Mothers: Protecting the Health of Newborn Babies

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By Dr. Sharon Cowden, CCP–Pittsburgh Pediatrics; Dr. Mark Diamond, CCP–South Hills Pediatric Associates; and Dr. Mike Green, Infectious Diseases, Children’s Hospital Pregnant women should get the pertussis vaccine (commonly known as whooping cough vaccine) during the third trimester of pregnancy, … Continue reading

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Bus Safety Tips as New School Year Gets Under Way

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By Chris Vitale, Injury Prevention Manager, Children’s Hospital of Pittsburgh of UPMC As summer vacation has ended, we want to make sure families and drivers are cautious about kids riding the bus to and from school. School buses are one … Continue reading

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