Jackson’s Journey: Battling Biliary Atresia

By Tamara Circle, mother of Jackson 

11On July 1, 2014, my husband and I welcomed into the world our second son, Jackson Fynn Circle. It was one of the happiest days of our lives. Little did we know that in just a few short weeks later, the happiest day of our life would turn into one of the saddest days of our lives. Like most newborns, Jackson was jaundiced, not enough to require any time under phototherapy lights or the use of a biliblanket, just typical newborn jaundice. In the following weeks however, the jaundice got worse, not better. At almost 4 weeks old, lab work showed that Jackson’s bilirubin was higher than it was at birth and that his liver enzymes were elevated.

Upon arrival to the Emergency Department at Children’s Hospital of Pittsburgh of UPMC, Jackson was quickly assessed and admitted for further observation and testing. After 5 days of endless tests and lab work, Jackson was released with no clear finding or explanation for why he was jaundiced or why his liver was inflamed. The following week, we returned to Children’s for Jackson to be seen in the clinic for further evaluation by liver specialist, Veena Venkat, MD. We learned that further lab work and testing would be needed, most importantly a test called a HIDA scan. The HIDA scan would tell us if bile was flowing from Jackson’s liver to his small intestine as it should. Within 24 hours, if the radioactive tracer that was injected did not end up in Jackson’s bowel, we knew that Jackson could be facing very serious health problems.

A week later, on Aug. 13, we arrived back at Children’s for Jackson to have the HIDA scan. After 4 hours, no tracer was seen. We waited another 2 hours and again after 6 hours; still no tracer. Scared and fearing the worst, we were sent home and were informed to return in the morning to see if the tracer showed up after 24 hours as some times, in rare cases, the tracer moves slower than normal and will take the full 24 hours to show up. After a night of tossing and turning, and no sleep, we returned to Children’s the morning of Aug. 14, to learn that after 24 hours, the tracer had still not shown up in Jackson’s bowel. We were faced head on with our worst fears, that Jackson would need an operation (intraoperative cholangiogram and liver biopsy) to confirm that he did in fact have liver disease and even worse, a rare kind called biliary atresia, in which there is no cure.

In the next several days, we learned all about biliary atresia and the hurdles that Jackson was about to face for the rest of his life. With each conversation and with every article we read, we became more and more scared. Biliary atresia is a rare condition affecting approximately 1 in 10,000 to 20,000 births. Biliary atresia is a disease of the liver’s bile ducts. Shortly after birth, the bile ducts become inflamed and blocked, resulting in bile remaining in the liver. With bile remaining in the liver, liver cells began to destroy rapidly and cause cirrhosis, or scarring of the liver. Cirrhosis ultimately results in liver failure and then warrants a liver transplant. In order to prevent further liver damage, Jackson underwent surgery on Aug. 26, at 8 weeks old to have a procedure done called a Kasai by Stefan Scholz, MD, PhD, FACS, FAAP, director, Minimally Invasive Surgery at Children’s. The Kasai procedure is a procedure in which the liver is connected directly to the small intestine to drain bile. Although the Kasai procedure is most often not a cure for biliary atresia, it can give babies a chance to grow and live life, but mainly delays the need for liver transplant.

After 16 very long days in the hospital, Jackson was finally on the mend from his12 surgery and we were released home. Today, Jackson is 90 days post-Kasai and we are extremely happy to announce that he is doing great! His Kasai is working the way we prayed it would and his bilirubin is back to normal. There is no guarantee that the Kasai will continue to work for the rest of his life and at some point he made need a transplant, but for today, he is happy and thriving and we are so truly blessed with his progress. Jackson’s journey with biliary atresia has been the most difficult time of our life. Our journey along this path has been paved by some very extraordinary and remarkable people and without them we would be lost.

To our wonderful team of doctors, the compassion you have for your patients is truly amazing and there are no words to describe the gratitude and appreciation we have for all of you. Without each of you, Jackson would not be where he is today. Thank you for all you have done and will continue to do. To some of the most caring nurses we have ever met: Lauren, Jen, Liz, and Maddie, thank you for fighting for us, crying with us, but most importantly loving Jackson like he was your own. You have touched our hearts and forever left a mark. Not only have we been blessed with an amazing hospital, doctors and nurses, but also with the most loving and supporting family and friends who have been with us each and every step of the way. We are humbled at your endless generosity and thank God for all of you.

13Along Jackson’s journey we have shed many tears, lost several hours of sleep, and asked the question “Why?” probably a million times. A very wise and dear friend reminded me that good things don’t just happen to good people and bad things don’t just happen to bad people. At some point in time in all of our lives, good and bad things will happen to us whether we believe they should or not. With this, I realized that I could keep feeling sorry for myself, or I could wipe my tears away and do something. Up until Jackson’s diagnosis, we had never once heard or read about biliary atresia. This is something we are determined to change. Not only do we plan to give biliary atresia a voice, but we plan to help fund research to find a cure and to help other families battling this disease.

Today (Dec. 1) is National Biliary Atresia Awareness Day. We ask that you share our story with as many people as possible to help us bring awareness to this devastating disease. Not only does biliary atresia need a voice, it needs a cure. Green is the awareness color associated with biliary atresia, so today, please wear your green and think not only of Jackson, but every precious baby fighting the biliary atresia battle.

Editor’s note: If you would like to find out more about biliary Aaresia or help spread awareness, please visit the families page at www.gofundme.com/gfj584 or email ttochell@yahoo.com.

Posted in Uncategorized | 1 Comment

Children’s Survivorship Team Wins $25,000 Award at Pitt Innovation Challenge

By Noelle Conover, Project Coordinator, SurvivorConnect, Children’s Hospital of Pittsburgh of UPMC

The Survivorship Clinic Team within the Division of Pediatric Hematology/Oncology at Children’s Hospital of Pittsburgh of UPMC recently competed in the latest Pitt Innovation Challenge (PinCh).

PInCh is a competition designed to generate innovative solutions to challenging health problems in a fresh, exciting way. Each challenge poses a new health-related question. Teams of competitors submitted brief video proposals to bid for funding to move their idea forward.

The Children’s Hospital project, Caring for Cancer Survivors at the Virtual Bedside, was selected to receive a $25,000 award. The team included Jean M. Tersak, MD; Aimee Costello, DNP; Noelle Conover, MS; and Bethany Nugent, RN, all with the Division of Pediatric Hematology/Oncology; and Kate Dempsey, program coordinator of Telemedicine at Children’s. The team proposed connecting survivors of pediatric cancer, their primary care physicians (PCPs), and the Survivorship Team at Children’s together using technology, called Vidyo, provided through the Telemedicine Center at Children’s.

The team proposed a synchronized telemedicine transition visit, consisting of reviewing the patient history by the PCP as well as any concerns expressed by the patient. The PCP will then review the physical examination and any concerns. The Survivorship team will then review this information with the survivor and PCP in the context of the prior treatment received and known risk of late effects. An individualized plan of care and recommended testing will be shared with patient and PCP.

The team plans to pilot the project with 20 PCPs in order to solidify standard operating procedure and to develop templates by which to expand this operation. Pre- and post-questionnaires will be developed for both the PCP and the survivor to permit documentation of benefit of the closed loop communication among the survivor, PCP, and the Survivorship Team.

Questionnaires will evaluate information such as fund of knowledge, satisfaction with the transition process, and effectiveness of the electronic tool. Ultimately, because this model incorporates improvement in communication and ease of use, it has significant potential to become a national model of transition for survivors of childhood cancer.

There were 60 applicants for this competition. Three winners won awards at the $100,000 level and four won at the $25,000 level.  The Survivorship Team is delighted to be chosen for this prestigious award.

For more information about the Survivorship Team, go to www.chp.edu/survivorship.

Posted in Cancer, Uncategorized | Leave a comment

Parental Concerns About Cyberbullying? What you should know and what you can do

By Ana Radovic, MD, MSc, Associate Fellowship Director, and Rebecca Dick, MS, Clinical Research Coordinator, both with Division of Adolescent and Young Adult Medicine

106678483-150In October 2013, Elizabeth Miller, MD, PhD, chief of the Division of Adolescent and Young Adult Medicine here at Children’s Hospital, wrote a great blog entry about preventing bullying for National Bullying Prevention Month. She offered some helpful tips for children who experience bullying as well as advice about teaching all children and youth to speak up and say something about bullying behaviors when they observe them.

Many parents are concerned about what is called cyberbullying, which is communicating false, embarrassing, or hostile information online. Some differences between bullying and cyberbullying are that cyberbullying:

  • can occur at any time
  • has a larger audience and can lead to more embarrassment
  • is harder to delete

Unfortunately, cyberbullying is very common. Up to 70 percent of students report seeing frequent bullying online. Bullying is especially common for teens who identify as lesbian, gay, bisexual, transgender, queer, or questioning. About nine out of 10 have experienced harassment at school or on social media.

About half of young people report they have said something mean or hurtful to another
person online. And the harmful use of Internet-based and mobile technology is not limited to peer-to-peer interactions. A growing body of research is showing how adolescents in dating relationships are using mobile technology, such as texting, and online communication, such as Facebook, to monitor or control the activities or whereabouts of their partner or to be emotionally or verbally abusive to that person. Just as with cyberbullying, this cyber dating abuse can have detrimental consequences to the health of adolescents. It is important to note that behaviors that may not be harmful when they occur in person may be harmful when the communication is difficult to delete or when it can be repeatedly viewed by the recipient at any time or spread to non-recipients easily.

As adults, it is important to role model positive online behavior for young people. Teens often see examples of adults posting embarrassing or hostile information when they scroll through their Facebook newsfeed, still the most commonly used social media site. One simple step adults can take to counteract cyberbullying in teens is to begin speaking up when they themselves witness cyberbullying.

Adolescents are able to understand what the best decision is when they have time to think about it. When it comes down to impressing friends, though, they tend to make impulsive decisions. This impulsivity is harder to control online where sharing occurs quickly with many peers with the swipe of a thumb. The effects of this impulsivity can be devastating for the bullied child.

This video from the New York City Community Healthcare Network Teen PACT public service announcement series tells the common story of “The Accidental Bully.”

Without social media, the girl in the video may have shared her joke about a boy with only a few close friends. Instead, social media gave the joke a wider audience, a life of its own, and resulted in the boy and his family’s drastic decision to transfer to a new school.

Social media is not all bad and it is not going away. It allows adolescents to achieve some of their developmental milestones. These include:

  • accepting body image through positive comments about pictures
  • developing social capital
  • having a sense of belonging by being included in peer activities
  • being creative by sharing photos or artwork
  • developing new skills like independence and initiative for example by signing up for volunteer work on dosomething.org

The best way to address the ills of cyberbullying and social media is to continue having open conversations with your youth. Some suggestions of discussion topics include:

  • what sites they are visiting
  • who they communicate with
  • consequences of posting questionable content, photos
  • privacy settings

Talk to your youth about how they portray themselves on the Internet. Teach them that harassing statements are not appropriate at any time — whether they are made to them or by them. Also, you can teach and exemplify positive bystander behavior. This includes things like if your child witnesses cyberbullying, to post positive comments on their friends’ wall instead of the negative comments the bully is posting.

Open communication is very important to a child’s relationship with his or her parent. When a bullying situation occurs, your child will know he or she can come to you for your advice and guidance.

For more information, please visit:

  • DoSomething.org, an organization for social change for young people and sign up for their free texts about stopping bullying
  • StopBullying.gov, the federal government’s headquarters on bullying information where you can find useful tips on preventing and responding to bullying
  • LoveisRespect.org, a resource for fostering healthy dating attitudes and relationships from the National Domestic Violence Hotline and Break the Cycle.

For more information about the Division of Adolescent and Young Adult Medicine, call 412-692-6677 or visit www.chp.edu/adolescent.

Posted in Uncategorized | Leave a comment

2014 International Walk to School Day

This gallery contains 2 photos.

Safe 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 … Continue reading

Gallery | Leave a comment

October is National Down Syndrome Awareness Month

This gallery contains 1 photo.

By Kishore Vellody, Medical Director, Down Syndrome Center of Western Pennsylvania, Children’s Hospital of Pittsburgh of UPMC In 1984, President Ronald Reagan signed a resolution declaring October as National Down Syndrome Awareness month.  Thirty years later, we continue to celebrate … Continue reading

Gallery | 1 Comment

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 As video footage and news reports of football players assaulting their female … Continue reading

Gallery | Leave a comment

Banner Care For Our Bonus Baby

This gallery contains 4 photos.

By Dawn Campbell, mother of Qavah Our 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 … Continue reading

Gallery | 4 Comments